About Me
- Name: Ryan Morgan
- Location: Atlanta, Georgia, United States
Ryan passed away just 2 weeks before his eleventh birthday, July 10th 2009 and 2 days after his beautiful mother, Missy, July 8th 2009 . Ryan was diagnosed in 2004 with Stage IV Neuroblastoma. Missy was diagnosed in 2007 with Stage II, Triple Negative Breast Cancer. Both Ryan and Missy fought long and hard against this horrible disease. Surgeries, high doses of chemotherapy, high doses of radiation, many, many transfusions and many, many days and nights in the hospital. Both Missy and Ryan suffered metastatic relapses. Ryan three and Missy two. This blog documents our family's travel down a path of not only pain and sorrow, but the joy and happiness we tried to infuse into our lives despite the terrible odds of their survival. Heidi, Will and I will go on though the rest of our lives, thinking about both of them everyday, knowing that the two of them are loving heaven together and keeping a watchful eye on us...until we all meet again.
Thursday, November 26, 2009
Thanksgiving ??
I am not thankful that cancer has taken the lives of Missy and Ryan. I am not thankful that billions of dollars later, her breast cancer was not curable. I am not thankful for the minuscule amount of money that is available to research far better children's cancer treatments. I am not thankful my house is spotless all the time. I am not thankful my life is so simple. I am not thankful that I can hardly see this darn keyboard right now!!...
I am thankful for Heidi an Will. I am thankful for the unbelievable support I have from Missy's and my family. I am thankful for all of our friends that continue to support us and keep our lives light hearted and full of smiles. I am thankful for Missy's insistence that her family moves forward, and treasure the great memories we all made together while she worked tirelessly to built the strong foundation that is serving us so well today and will through all the years to come. I am thankful I have someone very close to me. Someone I can talk to every day, not only about Missy and Ryan, but how our day went and what the future holds. That has been an unexpected blessing.
So...thankful ?...yes... and no.
Now as we say at the Lighthouse.....LLLLLLLETS EAT !!!!!!!
Happy Thanksgiving to all, Les, Heidi and Will
I am thankful for Heidi an Will. I am thankful for the unbelievable support I have from Missy's and my family. I am thankful for all of our friends that continue to support us and keep our lives light hearted and full of smiles. I am thankful for Missy's insistence that her family moves forward, and treasure the great memories we all made together while she worked tirelessly to built the strong foundation that is serving us so well today and will through all the years to come. I am thankful I have someone very close to me. Someone I can talk to every day, not only about Missy and Ryan, but how our day went and what the future holds. That has been an unexpected blessing.
So...thankful ?...yes... and no.
Now as we say at the Lighthouse.....LLLLLLLETS EAT !!!!!!!
Happy Thanksgiving to all, Les, Heidi and Will
Friday, November 20, 2009
Smarty pants...and dresses !!!!
Heidi and a few of her friends were inducted into the National Honor Society last night. I am thankful for Heidi continuing to stay focused, cheerful, helpful and strong. These years are trying in any girls life, even without all the added emotional stress she carries. I am so very proud of her...( you to Will :)Les
Monday, November 09, 2009
Productive/fun weekend
It was a gorgeous weekend in Atlanta. We managed to get all of our fall yard work wrapped up. Tons of leaves removed, grass cut, pool closed for the winter, garage and dog kennel neat and tidy and three soccer games. Heidi had taken the ACT test two Saturdays ago and took the SAT test this Saturday. 5 hours Ugh ! She was pretty confident she had done well on both.
Kristen called with extra tickets for Sunday nights 
Thrashers/Blues game so the kids and I met Jean and Steve's family, Kristen and Mike's family to watch Atlanta kick St. Louis's butt !!!! Thank you Kristen :) We all had so much fun !
Thrashers/Blues game so the kids and I met Jean and Steve's family, Kristen and Mike's family to watch Atlanta kick St. Louis's butt !!!! Thank you Kristen :) We all had so much fun !I have been trying to figure out what to do that will be fun for the dinner that was lucky to be the high bidder on with "super pitcher" Tom Glavine and his family. I have a couple ideas in the works that will hopefully turn the whole thing into a big party, that would be awesome :) Keep your fingers crossed !
Les, Heidi and Will
Friday, November 06, 2009
Home Coming, Halloween & Happy Memories
As time presses on, so are we. The kids and I stay extremely busy. They have been such a blessing to me it's hard to describe. The love we had for Missy and Ryan has never left our minds, nor will it ever. The transition into our new lives has been one of great memories, relived day after day mostly while sitting at the dinner table or watching our favorite shows. We know and can feel them watching over us. Cheering us on. Moving us forward. It is a good, warm, loving feeling. It makes me smile. I pray I can continue to lift up Heidi and Will and never let them down. That is of the up most importance to me.
Heidi looked as beautiful as ever for Home Coming. Her only wish was for more student input for song selection!!!! Things don't change because I can remember the exact same feeling at our dances, Ha !!
We stopped by our usual Halloween haunt, Missy's brother Walt's house. They get hundreds of little trick or treaters each year. Walt and Sarah put on a great party, very fun. Heidi had her own later with scary movies.
We have just two more weekends of soccer then it's finally over. You always look forward to both the start of the season and THE END !! This also means the beginning of Basketball season for Will. Ugh...
We are really excited to be going back to Vancouver Island for Christmas. Love skiing, roasting oysters on an open fire, cracking a Miller or two with old, but dear friends. Can't wait !!
I have managed to get out a couple times, with plans for a couple more. Lots of fun stuff to do !! We have also booked a cruise over the kids spring break. It's a long time away but still something to look forward to.
Thank you to all our friends for keeping us in your thoughts, its a comforting feeling. Les, Heidi and Will
Monday, October 05, 2009
Parked it
We opted for Universal Studios and Adventure Island today instead of another water park. (check out Will's expression while looking at the two to his right)
With express passes we were able to get in every ride at both parks, at least once by 6pm.
We all had a great time flying from coaster to coaster and a great lunch at Jimmy Buffet's Margaritaville.
We will head home first thing in the morning. My cousin Kim is in town so I hope to catch dinner with him in Atlanta tomorrow night. I know Rick has been doing a good job with Balto but I'm sure Balto is ready for Will to get home and clean out his pen!!
The kids had such a good time. Everything went so smoothly. I am thankful we could get this trip in and give them a well deserved, fun break :)Les, Heidi and Will
Saturday, October 03, 2009
Still summer in Florida !
Our first day in Orlando was pretty laid back. Kim and Tim Hudson (Go Braves!) were kind enough to let the kids and and I use their house here in Celebration Fl. It is the perfect time of year here, 90 and sunny :)
The kids and I headed out to Boggy Creek for a high speed ride on an air boat. Ever since watching Gentle Ben on TV over 30 years ago, I've always wanted to do that. They are very fun boats...loud, but fun!! We saw plenty of gators. Young ones. Capt. Jeff grabbed one and let Will hold it.
Then we proceeded to get our obligatory Polaroid with this 3 year old with his poor little mouth taped shut. I asked...but they wouldn't remove it. We spent the rest of the day messing around at the pool.
We are going to Wet n Wild water park today and Disney's Blizzard Beach tomorrow. I'm guessing lots of stairs. I need it after all this restaurant food !!Les, Heidi and Will...living life
Saturday, September 26, 2009
Quiet Heroes Photo Shoot
Lynn Crow Photography donates countless hours of her professional services to benefit CURE and also the families dealing with childhood cancer. Her link above, are pictures from the Quiet Heroes Luncheon.
Awesome job Lynn !! Thank you so much.
Les, Heidi and Will
Awesome job Lynn !! Thank you so much.
Les, Heidi and Will
Saturday, September 19, 2009
Shhhhh......Quiet Heroes
What a tremendous day at the Hyatt Plaza downtown Atlanta where Cure Childhood Cancer held their 5th annual, tribute to Quiet Heroes. This luncheon was Missy's favorite event of the year. Mom's of children with cancer are honored while the fund raiser pulls in a few hundred thousand dollars. Thank you again for all of you that have donated to this charity on behalf of Missy and Ryan. This year was dedicated to the two of them. Kristin, thank you for all of your kind words. Jill, you were awesome as the Hostess. I know Missy was smiling! Soooo many of Missy's friends came up to me to offer condolences and check on Heidi, Will and myself.
I must say that it was definitely my lucky day. I had a full table of all of our friends. I also was lucky enough to have one of my raffle tickets drawn and won a new 54"plasma TV . I was also the lucky bidder for my family to join Tom and Chris Glavine's family for dinner. I am really looking forward to that. We are not sure where we will do dinner but I'm holding out for just grilling burgers in the backyard !!!!
Lynn Crow photography took a million pictures so I'm hoping to grab a couple and put them up here soon!!
Missy had a chair at the mothers table and some of her longtime friends wrote and signed a guest book for her. It was a very special gesture. Thank you so much for including Missy ! Thank you so much Kristin and Ginger for inviting me to help attempt to fill her void. I really appreciate the opportunity to participate. Now if we can just get the Foxworthy PSA's on the networks, that will really help the CURE push !!!!!!!
Still counting our blessings... Les, Heidi and Will
I must say that it was definitely my lucky day. I had a full table of all of our friends. I also was lucky enough to have one of my raffle tickets drawn and won a new 54"plasma TV . I was also the lucky bidder for my family to join Tom and Chris Glavine's family for dinner. I am really looking forward to that. We are not sure where we will do dinner but I'm holding out for just grilling burgers in the backyard !!!!
Lynn Crow photography took a million pictures so I'm hoping to grab a couple and put them up here soon!!
Missy had a chair at the mothers table and some of her longtime friends wrote and signed a guest book for her. It was a very special gesture. Thank you so much for including Missy ! Thank you so much Kristin and Ginger for inviting me to help attempt to fill her void. I really appreciate the opportunity to participate. Now if we can just get the Foxworthy PSA's on the networks, that will really help the CURE push !!!!!!!
Still counting our blessings... Les, Heidi and Will
Tuesday, September 15, 2009
Sept. is Childhood Cancer Awareness Month
Monday, September 14, 2009
New office pic
Missy.......... Forever In Our Hearts .......... Ryan
May 9 1963 - July 8 2009.......... July 26 1998 - July 10 2009
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This picture really captures the true face of childhood cancer. Missy, wanting to drink up as much of Ryan as she can, while she can... Ryan expressionless, going through the motions, just as he was told to during every procedure we'd ever asked him to endure. He was always so brave. I hated having to tell him "hang on, just a couple more minutes, you can do it, you're doing so well...." it was torture. He would look at me through his tears, his eyes saying, "why are you doing this to me" yet he would never utter a word. It makes me so sad I just can't bear it...
Les
Wednesday, September 09, 2009
Last call .....
We have two seats available at our table for the Quiet Heroes Luncheon, 11 am Saturday the 19th. Great Food, Great People and a Great Cause. This year is special for me, not because it's my first time, but because this Quiet Heroes Luncheon is being dedicated to Missy. There are unbelievable items to be bid on and raffled off. Perfect for early Christmas gifts !!! Seats are $125 each. It's going to be fun :) Check the link above for all the information.
Les
Les
Tuesday, September 01, 2009
Day 2 on 11Alive News
The second installment from 11Alive News features Elle Rivers and son Jake also more on Quiet Heroes. Tomorrow, the segment will focus more on the Cure Childhood Cancer organization.
Very nice job this morning Elle !!!
This is one of our pics from our PF Chang's lunch yesterday. What a great time with Lisa, Lynn, me, Kristen and Ginger. Fantastic gifts :) My turn next !
Wade and I caught up over a couple of beers at Taco Mac. I got home at 5 and Heidi and Will had cake cards and gifts waiting for me. They are the best !!!! Rick, Barre and I took the kids and their friends to dinner in Athens and slammed a Raffertini or two !! Thanks for driving Rick ;) Very nice Birthday, thank you all for the notes, emails, calls and most importantly prays for our family.
Les, Heidi and Will
Very nice job this morning Elle !!!
This is one of our pics from our PF Chang's lunch yesterday. What a great time with Lisa, Lynn, me, Kristen and Ginger. Fantastic gifts :) My turn next !
Wade and I caught up over a couple of beers at Taco Mac. I got home at 5 and Heidi and Will had cake cards and gifts waiting for me. They are the best !!!! Rick, Barre and I took the kids and their friends to dinner in Athens and slammed a Raffertini or two !! Thanks for driving Rick ;) Very nice Birthday, thank you all for the notes, emails, calls and most importantly prays for our family.
Les, Heidi and Will
Monday, August 31, 2009
September Is Childhood Cancer Awareness Month
11 Alive News and Jill Becker kicked off "Childhood Cancer Awareness Month" this morning with the Becker's telling their story of their son Matt, and his battle with cancer at age three. Matt was a treasured friend of Ryan's. Matt has chosen to give back to other children that are stricken with this horrible disease by volunteering with Camp Sunshine. The two quickly became good buddies at camp. Matt was nice enough to remember Ryan this morning while talking about his experiences during his fight and how it has effected his life. His mom Jill, was a friend to Missy. She graciously lends her name and time to keep waging war on childhood cancer even after being away from the front lines for 18 years. There are many caring people in this tight knit community that work tirelessly to keep children's cancer awareness alive and raise the research money that is desperately needed.
Thank you to Jill and her wonderful son Matt for all they do :)
Les
Thank you to Jill and her wonderful son Matt for all they do :)
Les
Sunday, August 30, 2009
Busy Wknd !
Lots of play time and just enough left for lawn and laundry. We've had a pretty good weekend. :-)
I'm still scheduled for lunch in Atlanta on Monday, then out for dinner in Athens later on that evening. Looking forward to it all tomorrow.
Les
Thursday, August 27, 2009
WSB750 Care-a-thon
WSB's annual Aflac Cancer Center Care-a-thon is under way. Ryan has participated in this, among others, fundraiser over the years. His friend Kenneth and mom Anastasia have remembered Ryan on the WSB site. Thank you Anastasia for that :) Click on Kenneth M at the bottom of the WSB link to read Kenneth's heartbreaking story. We wish them great days, no pain and many smiles. Cancer is a terrible horrible thing...
Les
Les
Wednesday, August 26, 2009
Quiet Heroes
Jill Becker and 11Alive News will airing a tribute to Quiet Heroes starting Monday morning at 6:45am. Jill's son Matt was a good friend and a camp counsellor of Ryan's. Matt was one of the reasons Ryan looked forward to summer camp so much. If you can't tune in, I'm sure it will be on their web site at 11alive.com
The luncheon is happening Sept. 19th. This is one of the largest fundraisers for Cure of the year. From everything Missy used to tell me about going in the past, it's a good time with lots of cool and unique items to bid on. Bring your check book and I'll see you there !
The luncheon is happening Sept. 19th. This is one of the largest fundraisers for Cure of the year. From everything Missy used to tell me about going in the past, it's a good time with lots of cool and unique items to bid on. Bring your check book and I'll see you there !
I'm looking forward to a "birthday lunch" this Monday with some good friends . I'm thinkin it's going to be fun ! :)
Les, Heidi and WillMonday, August 24, 2009
Day by day
We have been settling into the new routine. Staying busy doing all the things that need to get done and deep into the new soccer season. We got Will's Pass Port application filled out and turned in today. We are going to Vancouver Island for Christmas and a little skiing. Smith and Julie are going to come with us. Very excited about the trip ! I'm going to Vegas over the long weekend to hang out with Jimmy and his family. No partying though !! (ha!) We are also planning a few days in Orlando to hit the Water Parks. We had to ditch them the last time we were there so this will be a make up trip.
Heidi and Will have been sooo helpful to me. Above, Heidi is whipping up a batch of her famous brownies ! She is such a smart, intuitive and resourceful young lady. I'm very lucky to have both of them. Very lucky to have great memories of Ryan and Missy to get me through the slow times and evenings. I have to say marriage is far better than being single, I highly recommend it....you singles will thank me for that little piece of great advice ! ;-)
Well, I'm falling asleep here !!!
Good night to all of our family and friends. Les, Heidi and Will
Monday, August 17, 2009
I used to hate those magnets on the fridge !!
Monday, August 10, 2009
Big Hearts, that's what our friends have
After a long season of daily swim practices and weekend meets, most parents and swimmers are ready to hang up the suits and move on !!
Our team on the other hand organized one more swim meet. A meet solely to raise money and awareness for Missy's two favorite organizations, CURE and The Lighthouse.
At our swim team wrap up party last night they announced that our 3 hour meet raised $2100.00 for these two charities, Yeah !!!
It was a lot of additional work and effort on many peoples part and I want to say how appreciative I am. Thank you so much to the Board, the coaches, all the volunteers, the donors and especially the swimmers that participated in the "SuperMorgan Swim Splash 09" I plan to match that awesome donation in Ryan's and Missy's names.
I also need to thank all the people that have send their donations directly to CURE and The Lighthouse. Missy's best friend Karen has been helping me send out Thank you cards. We have done our best to locate accurate address's and get them sent out but we have had a few come back. If you have not received a personal thank you by now, please accept this note in it's place. You have all made a wonderful gesture on mine and Missy's behalf.
I have been invited to attend the Quiet Heroes luncheon/fundraiser September 19th for Missy. I think it's really for the mom's but Kristen assured me there would be other guys there!
Sarah Corrigan, a writer, editor, publicist who has worked with Ryan's friend Jena, is looking into the possibility of publishing Ryan's story. I am very excited that a professional believes his story may have the right content to share with a much larger audience. Smith and Julie are good friends with Oprah so I may get them to get it into her "book club" should this work out! That would likely double sales!
With the first week of school over, we are getting in a routine. I am so thankful for the strong sense of self worth and independence Missy has instilled in Heidi and Will. I am so proud of them. Their strength is absolutely unbelievable. I thank God everyday for them! I do want you all to know, we are doing "fine". We have many many more smiles than tears. We miss them terribly but find peace knowing that they are together, directing us from the heavens above.
If I could just feel their touch one more time...
Les, Heidi and Will
Our team on the other hand organized one more swim meet. A meet solely to raise money and awareness for Missy's two favorite organizations, CURE and The Lighthouse.
At our swim team wrap up party last night they announced that our 3 hour meet raised $2100.00 for these two charities, Yeah !!!
It was a lot of additional work and effort on many peoples part and I want to say how appreciative I am. Thank you so much to the Board, the coaches, all the volunteers, the donors and especially the swimmers that participated in the "SuperMorgan Swim Splash 09" I plan to match that awesome donation in Ryan's and Missy's names.
I also need to thank all the people that have send their donations directly to CURE and The Lighthouse. Missy's best friend Karen has been helping me send out Thank you cards. We have done our best to locate accurate address's and get them sent out but we have had a few come back. If you have not received a personal thank you by now, please accept this note in it's place. You have all made a wonderful gesture on mine and Missy's behalf.
I have been invited to attend the Quiet Heroes luncheon/fundraiser September 19th for Missy. I think it's really for the mom's but Kristen assured me there would be other guys there!
Sarah Corrigan, a writer, editor, publicist who has worked with Ryan's friend Jena, is looking into the possibility of publishing Ryan's story. I am very excited that a professional believes his story may have the right content to share with a much larger audience. Smith and Julie are good friends with Oprah so I may get them to get it into her "book club" should this work out! That would likely double sales!
With the first week of school over, we are getting in a routine. I am so thankful for the strong sense of self worth and independence Missy has instilled in Heidi and Will. I am so proud of them. Their strength is absolutely unbelievable. I thank God everyday for them! I do want you all to know, we are doing "fine". We have many many more smiles than tears. We miss them terribly but find peace knowing that they are together, directing us from the heavens above.
If I could just feel their touch one more time...
Les, Heidi and Will
Saturday, August 01, 2009
Not invincable
Last night, my buddy Rick and I took Heidi and Will and a few of their friends, on a prearranged Braves baseball extravaganza. A massive 14 passenger SUV Limo picked us up at the house for a crazy ride to the Varsity where we all stuffed ourselves with burgers, dogs, fries and onion rings. Back into the Limo and dropped off at the Braves entrance where we were met Jessica Carlyle, she handed out Braves gear for everyone! After the game, she took us onto the field for a great view of an extensive fireworks show. We loaded back up and hit McDonald's in the Limo for fun :) What a great night. Thank you Kristin Connor and the whole gang at Cure, Kim Hudson, Jessica Carlyle and the Braves. Fantastic.
Our awesome swim team held and charity event this morning for The Lighthouse and Cure Childhood Cancer, Missy's two favorite organizations. Close to 100 swimmers participated. All had custom T-shirts " SuperMorgan Charity Splash 2009". It was very successful. Thank you to all the sponsors, The Barracuda Booster Club, First Baptist Church of Bethlehem, Church at Winder, Handbags by Diana, Maynard & Bartlett Realty, Ricky Robinson Heating & Air, Debra Robinson, Bently's Photography, Dr. Sharon Taylor and the Winder YMCA. What a large event to make happen so quickly !
I want to thank my newest friend Tim Cash. He facilitated The Mall of Georgia Honda buying back Missy's car today. I really didn't need the hassle of trying to sell it. It was too easy!
Karen came over to help me with Missy's office and the years of paper, documents, files, pictures, cards and on and on that she had accumulated. It was a huge job, but we got 95% of it done.
After having such a productive day, I have never felt such incredible sadness since losing them. I thought I was doing so well , then to get so overwhelmed to the point I could not hardly breath. It was far to much done in too short a time...then suddenly alone, to sit and reflect. It makes me so mad and so very sad. Heidi came in and sat down beside me and my fortitude returned. I get so much strength from Heidi and Will. I just need to keep them close.
Missy and Ryan had the best friends and family in the world, and that love has made it's way, full force to us. For that, I am thankful. We do love you all. Les, Heidi and Will
Sunday, July 26, 2009
Happy Birthday Ryan
I could sure use a Birthday hug. I miss you terribly.
Dad
Monday, July 20, 2009
Autopilot
Adrenalin runs through our veins making it bearable to continue on, even when you feel everything should be falling apart. I'm smart enough to know that this won't last long and I'm bracing myself for both the highs and horrible lows of grieving.
I have so many people to thank for making the last 2 weeks smoother that anyone could have imagined.
Julie and Smith, I truly hate that you have any experience in the planning and execution of a funeral. It absolutely tears me apart, but you have helped us out on so many levels. The service was perfect, there's nothing else to say...Thank you both, I know it was extremely difficult for you to go through again and I have asked more from you than I should have.
To my mom, you mean the world to me. I thank God to have you in my life. You knew exactly what was needed during the last month and a half, amazing. Thank you to the Bailey's for everything they have done for us and for graciously standing along side me during all the planning.
I have many wonderful people to thank, among them are, Wade and Donna, Mureil, Kristen, Jay, Steve, Jimmy, Johnny, Danny, Scott and Kristy, Karen, Bud-Ken-Michael-Jon, for picking up all my office workload, The First Baptist Church of Bethlehem, Smith Funeral Home, my family for flying in and staying with us, making sure everything was always done for us.
I feel as if I am operating in and out of a fog, forgetting things I have just said or done. I hope and pray that I can fill the understanding, compassion, wisdom and parenting skills that our family has lost. I honestly thought that losing Ryan would be the toughest part of this ordeal, it's not, I miss Missy unbelievably. My heart is in pieces. I don't know if I can raise these two beautiful children the way we could have together. I hope I won't let them or her down. I'm just scared. Les
The after party, PARTY !
Ryan always said " I like to be formal...but I also like to party "
We love you Ryan Reid !!!!!!!
Tuesday, July 14, 2009
Tribute Video Updated
Monday, July 13, 2009
Tune in.....
11Alive News will tonight, at 6:00 pm, air a special tribute to Missy and Ryan.
Many thanks to Missy's friends Jill Becker and Kristin Connor for making this happen!
Many thanks to Missy's friends Jill Becker and Kristin Connor for making this happen!
Sunday, July 12, 2009
Channel 11 story
Friday, July 10, 2009
Memorial Update
Please note the Service venue change
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Please join us in celebrating Missy's and Ryan's life
Visitation will be at
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Smith Funeral Home
Friday, July 17th 2-4pm, 6-9pm
Saturday, July 18th 10am-12pm
755 Atlanta Hwy SE
Winder, GA 30680-4474
(770) 867-4553
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Service will be held
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Bethlehem First Baptist Church
Saturday, July 18th 2pm
548 Christmas Avenue(Hwy 11 North)
Bethlehem, GA 30620
770-867-3577
Missy is holding one of her babies...
Early this afternoon, Heidi, Will and myself let our little Ryan go to be with Missy. He was so peaceful. I can feel Missy's arms 
wrapped around this shattered family, trying hard to make us be at peace.
Les, Heidi and Will
wrapped around this shattered family, trying hard to make us be at peace.Les, Heidi and Will
Wednesday, July 08, 2009
Broken Hearted
I'm so sorry to have to say to all our dear friends that Missy lost her battle with cancer this evening. I truly wish I could personally call each one of her awesome supporters.
Les
Les
The age old question...WHY ?
As Missy's and Ryan's friends call and write, come and go throughout the day, the hours seem to last forever and at the same time, go by in the blink of an eye. This is a process that every one of us will have to endure during our lifetime. There is no easy way. For us older types, the pain is now, and very sharp. For our children, the duration of that pain is many times longer. They are also afraid of what the future holds. My job is to make that pain filled time as short as I can. So we are planning a celebration of two wonderful lives. Both having sooo many friends near and far. We do not have a date planned but this is a notice to anyone that would love to share a special moment or say how Missy or Ryan has effected their life. Just shoot an email if you feel up to speaking. I realize that some people are gifted with the ability to stand firm and speak from the heart, while others, like me, are freezers... But we'll take you all, we have time :)
It will be a day that will live in our children's memory forever. It is up to us to help make it uplifting for them and proud.
In lieu of flowers, we will be taking donations for Missy's and Ryan's dear charities, CURE and The Lighthouse.
In God We Trust, Les, Missy, Heidi, Will and SuperRyan
It will be a day that will live in our children's memory forever. It is up to us to help make it uplifting for them and proud.
In lieu of flowers, we will be taking donations for Missy's and Ryan's dear charities, CURE and The Lighthouse.
In God We Trust, Les, Missy, Heidi, Will and SuperRyan
Monday, July 06, 2009
Long weekend...
Since we got back home last Friday, Ryan has been doing relatively well with his IV pain medicines. He had a couple dose adjustments over the weekend. He is getting fluids during the night but still refuses to eat anything even though he and I had ventured out to the grocery store and bought a bunch of all his favorite snacks. His esophageal pain is better but he still winces and crys when he swallows because of chest and tummy pain.
Missy has gotten so much worse since Friday. She can no longer stand and is confused the majority of the time. Occasionally she is cognitive and that brings a much needed smile to me. Thank goodness my mom is still here. She has extended her return home by a couple more weeks. With both of them this ill, you can't leave either alone hardly for a minute.
Their new Doctor is coming out today with their nurse. We need to revise the plan and have a nurse here all during the day. With prayers, Les, Missy, Heidi, Will and SuperRyan
Missy has gotten so much worse since Friday. She can no longer stand and is confused the majority of the time. Occasionally she is cognitive and that brings a much needed smile to me. Thank goodness my mom is still here. She has extended her return home by a couple more weeks. With both of them this ill, you can't leave either alone hardly for a minute.
Their new Doctor is coming out today with their nurse. We need to revise the plan and have a nurse here all during the day. With prayers, Les, Missy, Heidi, Will and SuperRyan
Thursday, July 02, 2009
Five years.....
Today is the last day we will be inpatient at Scottish Rite. We have been fortunate to have been given a great team that has cared for Ryan since first coming here in '04. The change in his health is very evident. Prior to these last 2 weeks, he would beg to get out of the hospital. He attempted on many occasions, bribing the Doctors. He talked his way out of ICU to go home just 12 hours after an 8 hour surgery! Now...he just wants to stay :'(
How do we even fathom what is transpiring? How did we possibly end up with both Ryan and Missy beginning home bound pain treatment the very same day...
How did we get so lucky to have such an unbelievable group of friends and family who have stepped up and gone out of their way to bring so much joy into Ryan's life. For that, we are truly grateful. We are not sure what the future holds but we do know this, we plan on continueing to appreciated every moment, we plan on trying to keep, at the very least, smiles in our house. We also plan to keep praying for miracles...Les, Missy, Heidi, Will and SuperRyan
Monday, June 29, 2009
Trying times
Ryan is finally doing a little better this evening. He is back on IV pain, fungal, viral, oesophagio, reflux, seizure, blood and platelets. It looks as though we will continue all of our meds through IV as we will meet with "home health" tomorrow here at Scottish to get it set up. We should be up and running at home no later than Thursday. I have been trying to get Missy on board with the same service for a while. She will discuss it with her Dr. first thing in the morning. This service with allow not only comfort care but treatment care as well! Oral pain medicine quite simply does not work for either of them. The difference between oral and IV is night and day. It is so good to see him feeling better to night, but I know Missy's at home...feeling terrible. We are praying she can get some rest. Les, Missy, Heidi, Will and SuperRyan
PS; Heidi leaves for Ireland, Scotland, Whales, and England tomorrow morning. I hope she has an unforgettable trip.
PS; Heidi leaves for Ireland, Scotland, Whales, and England tomorrow morning. I hope she has an unforgettable trip.
Sunday, June 28, 2009
Athens to Atlanta
Both Missy and Ryan are in the hospital. Their counts are very low and pain is very high. We are hoping both will be out and home tonight.
Thursday, June 25, 2009
A warm good bye to Vermont.....
This is a frustrated little boy in a grown up world. It is very hard for him to socialize with kids his own age anymore. The majority of his friends are teens and older. This, or any other disease, steals the innocents that is supposed to live in all children long after only 10 years. It breaks my heart to see it, but this is the reality. This gesture is not aimed at any of the wonderful Doctors and nurses that went out of their way to make us as comfortable as possible while in Vermont. Dr. Sholler analysed Ryan's labs daily, making adjustments to his treatment on the fly. She sat with Ryan and really got to know his bad side and he showed her a little of his good. Everyone was so patient with Ryan. This has been the last 5 years of his life. Fighting, winning, losing, sacrificing, enduring. He is maxed...and this is where he is, and it makes me so sad. Ryan has been such a good boy through it all and I desperately hoped that a day would come, where we could sit down, take a deep breath and utter two simple words...we won. He is getting sick several times a day. The thought of attempting to choke down many many pills makes him sick also. We are thankful for very little pain, as that was our goal with the Vermont study. This has been very successful.
I wish I could say the same for Missy. She is both very very sick and in a great deal of pain. It all just makes your head spin. It is simply unbelievable that this is all not fixable...We are praying for wisdom, compassion, guidance and great strength. Les, Missy, Heidi, Will and SuperRyan
Monday, June 22, 2009
One more day
An uneventful day here. Ryan is doing sooo good with all his meds ! He trys so hard to please me, in which I'm not a big fan of. Heidi and Will...you keep it up though ! His tummy finally went down enough for him to think he could fit a chili-dog in it from Al's French Fry's (a Wade recommendation...you really do need to get into the restaurant biz, Wade...) this place is a Varsity clone. 
He did get half a dog down, then asked our nurse for some nausea medicine. I am positive none of his antics are endorsed by Dr. Sholler !
We are getting blood tonight, chemo tomorrow and platelets again tomorrow night. Then, fly home to check on mommy :) We are really looking forward to getting on a plane. Not that Ryan hasn't taken a shine to a great staff here, we sure have, but we don't want to overstay our welcome ! One more day...Les, Missy, Heidi, Will and SuperRyan
He did get half a dog down, then asked our nurse for some nausea medicine. I am positive none of his antics are endorsed by Dr. Sholler ! We are getting blood tonight, chemo tomorrow and platelets again tomorrow night. Then, fly home to check on mommy :) We are really looking forward to getting on a plane. Not that Ryan hasn't taken a shine to a great staff here, we sure have, but we don't want to overstay our welcome ! One more day...Les, Missy, Heidi, Will and SuperRyan
Sunday, June 21, 2009
Puttered out
As crappy as Ryan's feeling, when a Dr. unhooks him from the pole and says he can get out for a while....that has a different meaning to him than that of the Dr. 
He immediately made plans to go to Pizza Putt, kinda like Chuck E Cheese but with mini golf ! I wouldn't let him eat (not that he wanted to) but we did have enough time to get in 12 holes :) It was very strenuous on him but he was quite pleased with himself for doing it. He has been asleep ever since we returned. Day three of chemo done and just one more to go. His tummy is still distended but not as tight. He is still doing Morphine and we have started Miralax. We are also running 2 antibiotics just to be on the safe side. Maybe Chili-dogs tomorrow...I'm hoping :-) Les, Missy, Heidi, Will and SuperRyan
He immediately made plans to go to Pizza Putt, kinda like Chuck E Cheese but with mini golf ! I wouldn't let him eat (not that he wanted to) but we did have enough time to get in 12 holes :) It was very strenuous on him but he was quite pleased with himself for doing it. He has been asleep ever since we returned. Day three of chemo done and just one more to go. His tummy is still distended but not as tight. He is still doing Morphine and we have started Miralax. We are also running 2 antibiotics just to be on the safe side. Maybe Chili-dogs tomorrow...I'm hoping :-) Les, Missy, Heidi, Will and SuperRyanSaturday, June 20, 2009
Half way through
Wade called us today to give us the low-down on a Varsity style chili-dog place here in Burlington. The plan was to go there today but he is not feeling well enough to eat. His picture looks like he's packed away a dozen!
But he really just can't expel the IV fluids as fast as they are going in. It is very painful for him and has been taking Morphine several times a day. We are hoping he is doing better by tomorrow, then stuff him full of chili-dogs!
He has been having vision problems over the last 3 weeks and I had kinda forgotten about it until Dr. Sholler asked today. He claimed he had none. Later today I asked again if he was still seeing double at about a 15' distance and he said yes. He just doesn't want any additional treatment so he says he was going to deny it. He also said he wished he could be hooked up to anesthesia permanently so he couldn't feel pain or worry, then quickly added I'd be hooked up to and we could still talk and do fun stuff...I told him he just described Heaven...Les, Missy, Heidi, Will and SuperRyan
But he really just can't expel the IV fluids as fast as they are going in. It is very painful for him and has been taking Morphine several times a day. We are hoping he is doing better by tomorrow, then stuff him full of chili-dogs!He has been having vision problems over the last 3 weeks and I had kinda forgotten about it until Dr. Sholler asked today. He claimed he had none. Later today I asked again if he was still seeing double at about a 15' distance and he said yes. He just doesn't want any additional treatment so he says he was going to deny it. He also said he wished he could be hooked up to anesthesia permanently so he couldn't feel pain or worry, then quickly added I'd be hooked up to and we could still talk and do fun stuff...I told him he just described Heaven...Les, Missy, Heidi, Will and SuperRyan
Friday, June 19, 2009
Chemo started
Ryan's has one chemo under his belt. We only told him this morning he was going back on chemo and you can imagine he wasn't too happy. He asked if he would lose his hair again. He is tired of going though that. I said we'll keep our fingers crossed that it comes back straight and blond, just the way he likes it !The biggest issue is that his tummy an ribs are so distended it looks weird. He is having pain with all this pressure. He has taken 2 doses of Lasix, a medicine that strips the body of fluid but we have no apparent reduction in his swelling. We went for a walk around to floor to try to help but it hurt him worse. Not to sure what the night holds but pray this fluid will find its way to the right places. He is taking Morphine still for his "normal" pain. He did eat just 3 spoons of soup and 1 bite of cake today. He said if they sold chili-dogs here in VT, he'd eat a whole one ! ya right. Missy is not doing well at home but continues to be cheerful and encouraging to Ryan and I on the phone. I can't remember if we mentioned my mom flew down from Canada to visit so she has been hanging out and helping around the house while we're up here. Hope she's been working on her tan in the near 100 degree weather there! Just 4 days to go! Les, Missy, Heidi, Will and SuperRyan
Thursday, June 18, 2009
Progress and Progressing
Not a good day for scan reports for Ryan or Missy. Ryan has shown progress in his bone and marrow but he has progressed in his liver, left eye and his resection location in his head. Chemo will start tomorrow and we are desperately praying that it gets to work immediately and takes control of it. His spirits are down and is still not eating. He is starting IV nutrition tonight. We will be in the hospital until Monday night and still on schedule to fly home on Wednesday morning. Good thing cause this fold out chair is going to kill me ! ( not that I'm whining :)
Missy got a telephone preliminary report that apparently shows progression also. She is meeting with her Dr. on Monday to get the full run down. I hate that we have to be so far apart when bad news is the only news of the day. Nausea, pain and mental anguish is taking a toll on the strength that she has left. I just can't imagine...
Seeking miracles, Les, Missy, Heidi, Will and SuperRyan
Missy got a telephone preliminary report that apparently shows progression also. She is meeting with her Dr. on Monday to get the full run down. I hate that we have to be so far apart when bad news is the only news of the day. Nausea, pain and mental anguish is taking a toll on the strength that she has left. I just can't imagine...
Seeking miracles, Les, Missy, Heidi, Will and SuperRyan
Wednesday, June 17, 2009
Perfect Sailing Weather !
Ryan has done a wonderful job today with his team here in Vermont. I think we are breaking him ! Well Dr. Sholler is. He got his blood work done, which didn't look too bad, overall check up, and his nuke med injection. First thing tomorrow he drinks contrast for his combined CT and MIBG scan then on to his bone and marrow aspirates.
Our day ended with a 30' sailboat cruise on Lake Champlain. The wind was good and the weather was warm. Good thing to cause I left Atlanta without a jacket. My friend Smith said I might be able to find one at Burlington?? We had a great time with our new friend Captain Gideon ! Ryan did most of the sailing. There were a lot of sailboats out tonight enjoying the perfect conditions. Hopefully thing will go as smooth tomorrow as they did today. Les, Missy, Heidi, Will and SuperRyan
Day one back in VT.
Who's excited to be back in Vermont ! not this guy...
We got in around 11 and settled into our new digs. We will be here until Friday when we check into Allen Fletcher through Monday. We our on our way to get his check up and an MIBG injection (damn, forgot his SSKI) We are hoping to tour the lake this afternoon on a sail boat. Ryan, " dad, can you even drive a sail boat" dad, "of course I can, how hard can it be" This should be fun if we can get the time to get it done !
We're feelin the love, Les Missy, Heidi, Will and SuperRyan
We got in around 11 and settled into our new digs. We will be here until Friday when we check into Allen Fletcher through Monday. We our on our way to get his check up and an MIBG injection (damn, forgot his SSKI) We are hoping to tour the lake this afternoon on a sail boat. Ryan, " dad, can you even drive a sail boat" dad, "of course I can, how hard can it be" This should be fun if we can get the time to get it done !
We're feelin the love, Les Missy, Heidi, Will and SuperRyan
Monday, June 15, 2009
Hangin with the Channel 2 Crew
Smith and Dennis hooked Ryan up with Mark Arum for an awesome tour of the WSB Channel 2 Studios. They were playing with the weather "blue screen", sitting in the anchors chair, visiting 95.5 the Beat, 97.9 the River and B-98.5. We can't forget Bortz ! Up next was a tour of Atlanta in their helicopter. They buzzed buildings, chased the Chattahoochee, a fly by Stone Mountain and hovered over Scottish Rite Hospital. He had a blast !!
The guy's pulled this together to help ease Ryan's stress of heading back to Vermont tomorrow night. We will get in late on Tuesday then meet with Dr. Sholler Wednesday. MIBG Scan, Bone and Marrow aspirates Thursday. Check into the hospital Friday through Monday for chemo, clinic on Tuesday. We will fly home at 7am on Wednesday. It will be a 3 months before we have to head back. We are pretty worried about the chemo side effects as he is feeling sooo bad already and not eating. On top of that, his counts are still extremely low. Wish us lots of luck. Prayers for Ryan and good direction for his doctors. Les, Missy, Heidi, Will and SuperRyan
Monday, June 08, 2009
Foxworthy, not joking around...
One of Ryan's many friends, Jeff Foxworthy steps up for all children who are battling childhood cancer. Just click on his link and scroll down through the various videos.
We are also incredibly saddened by the relapse of another good friend. Patrick's family is interviewed in the link above also. We are wishing Patrick a speedy recovery and back into remission as quickly as possible.
Thank you to Kristin Connor and her staff at CURE, who keep leading the way and funding the research that is keeping hope alive for the children fighting this brutal disease.
Sincerely, Les, Missy, Heidi, Will and SuperRyan
PS: Wade, thanks for bringing your butt over yesterday with the family (Boston Butt that is) Wow, you need to partner in a restaurant !! That was the best BBQ and Sauce South of the Mason-Dixon !!
We are also incredibly saddened by the relapse of another good friend. Patrick's family is interviewed in the link above also. We are wishing Patrick a speedy recovery and back into remission as quickly as possible.
Thank you to Kristin Connor and her staff at CURE, who keep leading the way and funding the research that is keeping hope alive for the children fighting this brutal disease.
Sincerely, Les, Missy, Heidi, Will and SuperRyan
PS: Wade, thanks for bringing your butt over yesterday with the family (Boston Butt that is) Wow, you need to partner in a restaurant !! That was the best BBQ and Sauce South of the Mason-Dixon !!
Saturday, June 06, 2009
Never ending battle is exhausting
Pillow...$20.00Cell Phone...$100.00
Kitty...$5000.00
Happy to be going home...Priceless
Good news, bad news
The CT scan shows the likely culprit of the fever and the stabbing pain, so we are checking out shortly. No real treatment or reason to hang out here. They trust us even though his counts and ANC are in the dumps. Not to sure the path we will be following now. We are emailing the report to Vermont this afternoon. Dr's George and Sholler will discuss next week and let us know any option. So the treatment for now is antibiotics and Morphine.
Missy has since checked into Athens Regional. Blood extremely low and likely platelets also. 3 units ordered. She is still very nauseous and in pain. She is in good hands though with her mom.
Les, Missy, Heidi, Will and SuperRyan
Missy has since checked into Athens Regional. Blood extremely low and likely platelets also. 3 units ordered. She is still very nauseous and in pain. She is in good hands though with her mom.
Les, Missy, Heidi, Will and SuperRyan
"I am happiest when our family is together"
The walk down the hall to our room on the Aflac floor is so incredibly hard this time. We pass by Ryan's portrait with the statement he made to the photographer a couple years ago, "I am happiest when our family is together". We strive to make that happen as best we can but it could never be enough. Both Missy and Ryan are so sick and in so much discomfort, no pain. Never ending pain. If you get beat daily, soon it's just an expected occurrence and you push on and that is what they do. Along with that is the mental anguish that weighs more heavily on Missy than anyone of us could imagine. My time divided (unequally I must add) between our family is not fair to Missy. I truly wish I could concentrate solely on her getting better. Heidi and Will have both been shining stars. So helpful, so strong, so independent. We are so lucky to have them to strengthen our family.
Ryan's CT Scan was right on time last night, midnight on the dot. We made it out of ER and to one of these beautiful Aflac rooms by 2am. Ryan is on antibiotics, fluids and Morphine. No official results from the scan yet but first impressions were something going on with his liver. We should have the full report today. If his blood work comes back negative and he doesn't have another fever, we will be working hard to get out of here. If that happens we can resurrect the plans we had for this weekend with our old, near and dear friend Wade and his family coming out to the house. That would be great ! Distraction is good medicine. Keep your fingers crossed ! Les, Missy, Heidi, Will and SuperRyan
Ryan's CT Scan was right on time last night, midnight on the dot. We made it out of ER and to one of these beautiful Aflac rooms by 2am. Ryan is on antibiotics, fluids and Morphine. No official results from the scan yet but first impressions were something going on with his liver. We should have the full report today. If his blood work comes back negative and he doesn't have another fever, we will be working hard to get out of here. If that happens we can resurrect the plans we had for this weekend with our old, near and dear friend Wade and his family coming out to the house. That would be great ! Distraction is good medicine. Keep your fingers crossed ! Les, Missy, Heidi, Will and SuperRyan
Friday, June 05, 2009
Can't stay away
Ryan and I are back in the ER again. His tummy pain has not subsided since beginning a week ago. I got home from work and discovered a 102.5 fever, up to 102.9 once we checked in. We have a lot of contrast to drink before his midnight CT Scan. Missy and Ryan were in the clinic on Wednesday also for the same tummy pain and ended up getting blood and platelets. We are praying for an answer to his discomfort and hopefully a quick fix. For now, Les, Missy, Heidi, Will and SuperRyan
Monday, June 01, 2009
Quick trip to the ER
Ryan has been feeling lots of pain lately but the last couple days he has experienced severe pain in his tummy and chest. He and his dad had a half day trip to the ER at SR. He was dehydrated and got some serious fluids. The ER doc said he was having pain from no food and all the pain meds. I'm glad they came home and he is resting on the couch. He has also been a little confused about things today. Les called Dr. Sholler and she made changes to his meds and said it was to be expected as well as his chest pains. The Nifurtimox can cause his joints to be painful and that is probably the pain he's been in. She was thrilled that his tumor markers in his urine had dropped by 100 points. That was nice to hear. We're gonna work harder on eating and drinking. Please pray for that and for no pain. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, May 30, 2009
Prayers for less pain please.
I am so glad to see Saturday come. Ryan and I are home until he feels like going to watch the kids swim-if he does. He is back asleep, but that is probably due to the new appetite stimulant we've just started. I took him to the clinic on Thursday and he weighed 41 pounds. He got blood and platelets. Yesterday was field day at his school and it was very hard to watch all his friends running around playing and know he wasn't able. School doesn't get out until this Friday. It has gone on way too long. Ryan started complaining of pain in his chest yesterday when he swallows. If this continues through the weekend, we'll be contacting Dr. Sholler on Monday. Please pray for his pain to improve. We're going to try and distract him today with the museum movie. He has been talking about going to see that, but he wants all of us to go. And so we will! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, May 26, 2009
19 years !!
Today marks our 19th Wedding Anniversary. We will likely do something simple as Missy is feeling pretty bad. Ryan has also taken a turn. He have been off of pain medication since Vermont but he started having leg pain again on Sunday and it has steadily gotten worse. He had to start taking Morphine yesterday. He did say that no matter how bad it gets, he will not do Fentynal !
We had a good long weekend.
Jimmy and Frankie flew back Vegas Saturday morning after a week long visit. We got a lot of yard work done. We were invited to Smith's 
families lake house for an awesome day on the lake, a 
great fish fry with some great friends !! We are scheduled to go back to Vermont on the 16th, for 10 days (oh no) we are going to take Will along to help keep Ryan from going crazy. Ryan still insists that he is not goings and hopes that Will and I have a good time. This week we are praying for a major reduction in both of their pain, please help us out with that. Lot's of love, Les, Missy, Heidi, Will and SuperRyan
We had a good long weekend.
Jimmy and Frankie flew back Vegas Saturday morning after a week long visit. We got a lot of yard work done. We were invited to Smith's 
families lake house for an awesome day on the lake, a 
great fish fry with some great friends !! We are scheduled to go back to Vermont on the 16th, for 10 days (oh no) we are going to take Will along to help keep Ryan from going crazy. Ryan still insists that he is not goings and hopes that Will and I have a good time. This week we are praying for a major reduction in both of their pain, please help us out with that. Lot's of love, Les, Missy, Heidi, Will and SuperRyan Saturday, May 23, 2009
Loving life at home.
Ryan and Les made it home yesterday around 5ish. He was able to get his blood and platelets and take care of the planned office visit from the comfort of the Aflac floor. He got a couple of stitches to close up his forehead. He said this morning he got the best night's sleep last night in his own bed. Thanks to Smith and Julie for coming down to the hospital and then coming out to the house and making our dinner. We're looking forward to another visit at the lake tomorrow. We had Ryan's favorite- a bonfire, last night. Thanks to the Vickery's, the Stapleton's, and Karen and Jackson for coming out to hang around the old campfire. It was like old times, almost. Thanks to so many for your prayers for the guys, too. Ryan is feeling so much better! Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, May 22, 2009
CT clear
Ryan was quite a mess by the time we made it down to Scottish. There was blood all through his hair and face. His shirt was soaked. All of that from a tiny cut taking two stitches to close. The best news was that the CT scan was clear for any bleeding on his brain. We will be getting platelets first then a couple units of blood as he was down in the 4's for hemoglobin.
We are certainly hoping that this will not become a standard reaction to this treatment. We are hoping to be out tomorrow. Les, Missy, Heidi, Will and SuperRyan
We are certainly hoping that this will not become a standard reaction to this treatment. We are hoping to be out tomorrow. Les, Missy, Heidi, Will and SuperRyan
Thursday, May 21, 2009
Headed to Scottish Rite
Ryan had a pretty listless day. I'm sure his hemoglobin is low, but he has an appt. tomorrow at the clinic. I'm surprised his mouth hasn't been bleeding. That is our usual sign that he needs platelets. Anyway, I'm updating tonight to ask for prayers for Ryan and Les. For safe travels to SR, they've been gone about 20 minutes, for Ryan's head to stop bleeding, and for him to sleep quietly all night, and hey, throw one in for Les' nerves. He wouldn't let me go with him. We both knew I needed to stay here with Heidi and Will. They were traumatized seeing him have a seizure, and then there was a lot of blood. I know this update doesn't make any sense. It's all over the place. Ryan didn't sleep hardly at all last night, and Les went and laid down with him in his bed. Les had been back in the living room about 15 mins when we heard a loud noise. Will was the first one to him and he was in the floor, blood on his head, having a seizure. We all went him and talked him through it and got cold, wet cloths for his head. We couldn't get it to stop after about 15 minutes so Les put him in the car and took him down. I hope that explains our prayer request tonight. This is one side effect of the Nifurtimox. I'll update when I get more information. Thank ya'll so much your love and prayers for Ryan and Les. We love ya'll. Les, Missy, Heidi, Will, and Ryan PS I've been wanting to update to thank my friend Carla, and her neighbor and friend who owns Franklin Gun Shop. She came by earlier this week with a cap, a t-shirt, and a few air-soft/b-b guns. Thank ya'll so very much!!!
Friday, May 15, 2009
One out of the Hospital, one in....
Missy spent last night in the hospital after having some blood work done and realizing her hemo was extremely low. They are finishing up her 3 units of blood and she should be checking out later this afternoon. She needs an energy boost as I will be in Columbus Ga with Will at the state soccer tournament Saturday and Sunday. Tonight we are headed to our county's Relay For Life event. Ryan is not selling Lemonade this year but he will be spending some cold hard cash with Heidi and Will ! They always have a good time with all their friends at Relay.
We had Ryan's weekly check-up at Scottish this morning. He is doing very well. Stephanie hooked him up with a "to-go" care package of a 5/8" x 22 port needle, Ryan's "special" port dressing, and hot packs, so when I convince him he has to go back to Vermont, we'll be ready! Thanks Steph! He was sure happy to see Dr. George also. Here's praying for an uneventful weekend (except for our team winning state!) Les, Missy, Heidi, Will and SuperRyan
We had Ryan's weekly check-up at Scottish this morning. He is doing very well. Stephanie hooked him up with a "to-go" care package of a 5/8" x 22 port needle, Ryan's "special" port dressing, and hot packs, so when I convince him he has to go back to Vermont, we'll be ready! Thanks Steph! He was sure happy to see Dr. George also. Here's praying for an uneventful weekend (except for our team winning state!) Les, Missy, Heidi, Will and SuperRyan
Wednesday, May 13, 2009
Detox is a terrible, terrible process
Ryan has been off of the Fentanyl and Morphine since Saturday. On Monday he started feeling slight effects of being off of the 24/7 pain killers. But yesterday the side effects really set in. Every 45min to an hour, he falls into an absolute pit of darkness for about 15min. He seems to for get who is and exactly where he's at. He becomes extremely emotional, sobbing and wanting us all to hold him at the same time. His balance disappears. He did not go to sleep at all Monday night but he did sleep a straight 5 hours last night. We are praying desperately that this torment that is tearing at his mind will begin to subside as soon as possible. It is heart breaking to watch. He gets so scared. He knows when it's just about to start and then falls over the edge and into a completely different state on mind.
But on the positive side...I just can't believe how quickly we were able to eliminate the pain medicine after starting the Nifurtimox. He has had no sign of the pain that was virtually disabling just last week ! It is just amazing. We will keep him on this program and slowly convince him he has to return to Vermont in a few weeks. Once he is feeling better, that shouldn't be too difficult. Please keep Ryan and Missy in your thoughts and prayers. Sincerely, Les, Missy, Heidi, Will and SuperRyan
But on the positive side...I just can't believe how quickly we were able to eliminate the pain medicine after starting the Nifurtimox. He has had no sign of the pain that was virtually disabling just last week ! It is just amazing. We will keep him on this program and slowly convince him he has to return to Vermont in a few weeks. Once he is feeling better, that shouldn't be too difficult. Please keep Ryan and Missy in your thoughts and prayers. Sincerely, Les, Missy, Heidi, Will and SuperRyan
Monday, May 11, 2009
All smiles this afternoon
We had a slight scare with the platelets this morning. Even after a full compliment of premeds, about half way through the bag, Ryan sat up and said he tasted something in his throat, then something in his chest. The nurses came in and gave him another dose of Benadryl and steroid. His lip end eyelid started to blister and they gave him a shot in the arm of Epinephrine. That got him back to normal. He is so laid back when all the action is happening. I think its good calm nurses and PA's ! Another blood test then a bag of blood and a pep talk to Ryan from Dr. Sholler about coming back in 6 weeks (which Ryan wasn't buying) and we were out of the hospital by 4:15 ! He was all smiles at 4:16 ! On the suggestion of our nurse, we headed to Pizza Putt to celebrate. It's a place where you eat crappy pizza and dump tons of money into video games - HE LOVED IT :-D
We just got back and have to get ready to leave here no later than 5:45am. We get into Atlanta at 9:30. Will and Heidi are also coming down to pick us up at the airport. That makes us even happier. Next update will be from the ATL. Thanks again for cheering us on up here in VT.
Les, Missy, Heidi, Will and SuperRyan
Sunday, May 10, 2009
Happy Mothers Day !
Ryan called Missy first thing this morning to wish her a Happy Mothers Day. He really misses her. Just 2 more days !
We were getting ready to head out for breakfast when Ryan caught a glimpse of all his pills lined up as usual and burst into tears. He told me his life is crappy, it's all hospitals and pills. He has been fighting this for half his life. He feels shaky inside, anxious. So we rocked and talked for a while, tears still streaming down his cheeks. Then I realized that his 3 day Fentanyl is out and he is in withdrawals ! It has happened once before. We decided not to put a new one on and try to stay busy to hopefully keep his mind off of it. I already see a noticeable dip in his leg pain ! If we can stay off the Fentanyl, the next step is to eliminate the Morphine. That would be awesome. Narcotics quite simply change a persons character. I think the Nifurtimox is somewhat similar (neurologically) but at the moment it just feels to me, and Ryan, we're piling on the meds.
We just want to see him happy and healthy once again. With God's good grace along with caring Doctors with new medicine, we might just get there. That will be a great day.
So hears to mothers (and fathers) who are fortunate enough to have been given the responsibility to look after the most precious gift we have been given. Happy Mothers Day. Les, Missy, Heidi, Will and SuperRyan
We were getting ready to head out for breakfast when Ryan caught a glimpse of all his pills lined up as usual and burst into tears. He told me his life is crappy, it's all hospitals and pills. He has been fighting this for half his life. He feels shaky inside, anxious. So we rocked and talked for a while, tears still streaming down his cheeks. Then I realized that his 3 day Fentanyl is out and he is in withdrawals ! It has happened once before. We decided not to put a new one on and try to stay busy to hopefully keep his mind off of it. I already see a noticeable dip in his leg pain ! If we can stay off the Fentanyl, the next step is to eliminate the Morphine. That would be awesome. Narcotics quite simply change a persons character. I think the Nifurtimox is somewhat similar (neurologically) but at the moment it just feels to me, and Ryan, we're piling on the meds.
We just want to see him happy and healthy once again. With God's good grace along with caring Doctors with new medicine, we might just get there. That will be a great day.
So hears to mothers (and fathers) who are fortunate enough to have been given the responsibility to look after the most precious gift we have been given. Happy Mothers Day. Les, Missy, Heidi, Will and SuperRyan
Saturday, May 09, 2009
Saturday, in Vermont, I think it was the 4th of July...
A little something for Rick. A stormy Saturday has us laying low and keeping updated on Will's soccer tournament. They are 1 and 1. Ryan and I went to see the new Star Trek movie this afternoon. He really got a kick out of seeing a bunch of Trekkie's all dressed up there !
I do need to clarify on the scans I referred to yesterday. I was shown scans from an unknown patient. Their original upon entering the study and then a scan from 3 months later. There was a huge change in the amount of bone and marrow disease. Those scans were not Ryan's. Wish they were!!! Maybe we can be that fortunate.
We are headed out for dinner shortly. We have sure been missing our birthday girl and Heidi and Will. We did send them the birthday song via recording and got a good description of the inside of the ice cream cake we left for the kids to surprise her along with her present. Happy birthday Missy, I know this has certainly not be one of your best (well, since you met me at least...) but we will make up 1000 fold next year, promise! Well back to keeping Ryan busy and his mind off of being here. We are headed out for dinner. Thanks for all your well wishes to all of us. Les, Missy, Heidi, Will and SuperRyan
I do need to clarify on the scans I referred to yesterday. I was shown scans from an unknown patient. Their original upon entering the study and then a scan from 3 months later. There was a huge change in the amount of bone and marrow disease. Those scans were not Ryan's. Wish they were!!! Maybe we can be that fortunate.
We are headed out for dinner shortly. We have sure been missing our birthday girl and Heidi and Will. We did send them the birthday song via recording and got a good description of the inside of the ice cream cake we left for the kids to surprise her along with her present. Happy birthday Missy, I know this has certainly not be one of your best (well, since you met me at least...) but we will make up 1000 fold next year, promise! Well back to keeping Ryan busy and his mind off of being here. We are headed out for dinner. Thanks for all your well wishes to all of us. Les, Missy, Heidi, Will and SuperRyan
Friday, May 08, 2009
Da' Burr-ger
At home, Ryan can't stand a new piece of furniture or a new picture or any change for that matter! So dealing with a new hospital and new nurses, physicians assistance, doctors, researchers, child life specialist and a myriad of other new things, puts him in a very defensive/angry mood. I hate that these new doctors can't see the awesome Ryan we all know. I'm afraid they won't either. It didn't happen in NY. After we leave the Hospital though, he is all Ryan. We can't wait to be catching the 7am flight out of here and headed home on Tuesday. I'm trying to get Ryan to eat but all his pain medicine is subduing it. We are hoping that once this Nifurtimox builds up in his system, the pain medicine will be reduced, then eliminated. I did get to see some before and after scans that show just how effective this new treatment is. We are very excited !! Will keep you posted and thanks for all your prayers, Les Missy, Heidi, Will and SuperRyan
Thursday, May 07, 2009
1st update from Vermont
Ryan should be waking up from his bone marrow aspirates now. They are done for the day. He got platelets this morning and had an MIBG - CT combination scan around noon. Today should be their hardest day. Tomorrow he should start the Nirfurtimox. I think it's a pill 3x a day. They have to take a cab from the Ronald McDonald house and have to wait a while for it to pick them up. It's kind of a pain. Ryan loved hailing cabs in NY. Please pray tonight for Ryan to eat and drink more and for him to have an easier time T-Teeing. The narcotics will definitely slow you down. That has been something of a challenge today. And please pray for Les' strength. I know this is very wearing on him. I talked to him just a bit ago and he hadn't eaten anything all day. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, May 04, 2009
Quote of the day !!!
One of Missy's friends shot us an email this morning. This is a good sign !
"I was a bit skeptical in January b/c Jack had a lot of disease at that point, but the Nifurtimox in conjunction w/ chemo has almost cleared him completely and he is pain free and off all pain meds!"
We are praying that we have similar results with Ryan, please join us.
Les, Missy, Heidi, Will and SuperRyan
"I was a bit skeptical in January b/c Jack had a lot of disease at that point, but the Nifurtimox in conjunction w/ chemo has almost cleared him completely and he is pain free and off all pain meds!"
We are praying that we have similar results with Ryan, please join us.
Les, Missy, Heidi, Will and SuperRyan
Saturday, May 02, 2009
Headed to Vermont !
We will know on Monday if we can begin a phase 2 trial in Vermont on Wednesday that utilizes Nifurtimox with a couple of chemo agents that Ryan has had in the past. Nifurtimox has been shown to lessen the side effects of chemo while at the same time enhance its effectiveness. The reason Ryan is eligible is that he has extensive neuroblastoma in his marrow and skeletal. (eligibility requirement #5). This Wednesday, he will do a MIBG/CT scan and bone marrow aspirates to verify. The study has us in Vermont Wednesdays though Sundays every 3-5 weeks for 5 treatments. Their will be no adverse side effects to this treatment so at worst, this will greatly lessen his pain, at best, it's possible to clear him once again. I have explained that these trips are to help replace the pain killers he is on, 24/7. Morphine, Fentanyl and Trilisate. All individually are for moderate to severe pain. He is on all three at the same time. I hate it.
Ryan had his garage sale today. He has been working on it for a month. You can see him washing Will's bike to get it ready for sale. He was raising money to get more airsoft weaponry for himself and Will. I offered to buy it all many times but he absolutely refuses. He wanted to make the money himself. He had many friends come by and pay prices that are not normally seen at your typical garage sale, if you know what I mean!! I will post a couple pics later. Thanks to Pat and Steve for your generous help! Ms. Wheeler, Gloria, Ryan's good buddy Matt and his family, Rick and Barre, Pat, Jill, Carla for making him very happy for all the effort he has put into it, all by himself. The other picture is of Will, and his entourage last night at the eighth grade dance. Seriously, he will really with Morgan. They had a great time. Thank you all again, and pray for great results in Vermont. Les, Missy, Heidi, Will and SuperRyan
Ryan had his garage sale today. He has been working on it for a month. You can see him washing Will's bike to get it ready for sale. He was raising money to get more airsoft weaponry for himself and Will. I offered to buy it all many times but he absolutely refuses. He wanted to make the money himself. He had many friends come by and pay prices that are not normally seen at your typical garage sale, if you know what I mean!! I will post a couple pics later. Thanks to Pat and Steve for your generous help! Ms. Wheeler, Gloria, Ryan's good buddy Matt and his family, Rick and Barre, Pat, Jill, Carla for making him very happy for all the effort he has put into it, all by himself. The other picture is of Will, and his entourage last night at the eighth grade dance. Seriously, he will really with Morgan. They had a great time. Thank you all again, and pray for great results in Vermont. Les, Missy, Heidi, Will and SuperRyan
YARD SALE TODAY! YA'LL COME!
Thursday, April 30, 2009
The right medicine
The right medicine is what we have found. We have substituted his nasty, make me mean, Keppra, with Trileptal, another anti seizure drug. This morning he is much more agreeable ! even though at this very moment we are still at the hospital. We moved him on to 50ml Fentanyl patch for 24hr medication and he gets Toradol every 6 hours on top. In short, he is feeling much improved this morning !!! He got out of bed at 7 and started packing. The first time he has walked since we checked in. Yesterday, you couldn't even touch his legs. He has ordered breakfast and is patiently waiting. It is sooo good to see him feeling better.
Missy has gone to Emory with her friend Karen for Chemo so we likely won't see her until this afternoon. She spoke with Heidi and Will last night but we won't be discussing this with Ryan. He is too stressed and his mood needs to get back to his normal, lighthearted and carefree, funny self. Thank you for all the thoughts and prayers that been lifting us up. Les, Missy, Heidi, Will and SuperRyan
Missy has gone to Emory with her friend Karen for Chemo so we likely won't see her until this afternoon. She spoke with Heidi and Will last night but we won't be discussing this with Ryan. He is too stressed and his mood needs to get back to his normal, lighthearted and carefree, funny self. Thank you for all the thoughts and prayers that been lifting us up. Les, Missy, Heidi, Will and SuperRyan
Wednesday, April 29, 2009
Ryan is our hero
Doctor George told us the news this morning that Ryan is out of treatment options. The bone scan shows the disease has progressed throughout his body and that his poor counts cannot recover from any type of chemotherapy required to simply battle it. He is in severe pain as the time wears off on his medicine. We are spending the night here again to get blood and platelets. The extra time will also help with the transition from iv pain killers to oral. Please pray that we have the ability to make Ryan as comfortable as possible. That he can have fun with his friends and family and we have half his strength and fortitude to walk bravely beside him. Les, Missy, Heidi, Will and SuperRyan
101.8 - Oh no
Did we just buy ourselves another day ???
Tuesday, April 28, 2009
Ryan is "fit to be tied"
Nothing is going his way today. First the Neurological team has slapped him back on Keppra and B1 for seizure prevention. He adamantly denies ever having one and is positive there isn't one in his future. He has let everyone here know, he is here for "PAIN, NOT SEIZURES !!" We made it through his Nuclear Bone Scan. He did sooo well staying perfectly still even though we can't eliminate all the pain. I have been doing my best to convince him he WILL be doing the MRI at 5. This has been difficult to say the least. Now Dr. George comes in, one hour before the MRI and tells us we are not going home ! He has assured us that we will be first on the checkout list in the morning. Can you imagine the state of his PO'd-ness after that! (that damn Keppra doesn't help either).
No results back yet from the bone scan but I could see it was not good. Dr. George is hoping to have both scan results first thing in the morning. Please send Ryan the strength to just get him through tonight and him finally getting home should carry him on tomorrow. Oh how I wish I had some good news, just once. Ryan has so many friends that care so much about him out there, for that, we are very thankful. Sincerely, Les Missy, Heidi, Will and SuperRyan
No results back yet from the bone scan but I could see it was not good. Dr. George is hoping to have both scan results first thing in the morning. Please send Ryan the strength to just get him through tonight and him finally getting home should carry him on tomorrow. Oh how I wish I had some good news, just once. Ryan has so many friends that care so much about him out there, for that, we are very thankful. Sincerely, Les Missy, Heidi, Will and SuperRyan
Monday, April 27, 2009
What a stressfull day
Thank you Erin for providing our friends and families a "real time" update first thing this morning. Things were moving so fast down here at Scottish Rite.
The crazy thing is, I would have normally waited to take Ryan to the clinic until after 8am. This saves Ryan all the hassles that the emergency team put him through. Today though, something just made me say, "we'd better go now" 3am. What luck to be in Emergency when his seizure happened.
Nothing seemed to be out of the standard routine. We were in a dark room and it appeared Ryan began to stretch and turn to look at me. His eyes were open so wide and I made a quick quip. After a couple seconds of processing and I realized the hollow look in his stare. I hit the call button and opened the door yelling code blue. A four person staff was in the room, working in under 10 seconds. It is scary to be there and almost as scary reliving it right now. The seizure and morphine combined to put him out for a few hours of much needed rest. Missy made her way down to the hospital before 9am. All the tests seem to show stable signs. He will start back on the anti seizure medicine, Keppra. He is in incredible pain in all his major muscle groups, a pain that morphine hardly eases. He has it every 4 hours. Kristen Connor popped in to see if there was anything she could do , and Smith and Julie stopped by to help cheer him up. They ended up driving Missy and her car home tonight, as Missy is hardly doing much better than Ryan. We are hoping to be out tomorrow and back at home, safe and sound. Thank you all for your kind words, thoughts and prayers. Sincerely, Les, Missy, Hedi, Will and SuperRyan.
Erin's post
Hi everyone,
Missy called me this morning and asked me to update the blog. Ryan spent yesterday on the couch with severe leg and arm pain and could not keep anything down. He started to run a fever in the middle of the night, and Les took him to Scottish Rite at 3 AM. Missy told me that she talked to them earlier and they were both in tears. Ryan had a seizure at some point after arriving at Scottish Rite. His pain is so high that they have basically knocked him out with strong morphine. They will be staying in-patient at Scottish Rite until the pain can be controlled and a plan formulated. Missy is driving there right now. She asked me to post this information and to ask for your prayers. They are obviously very worried.
Erin
Missy called me this morning and asked me to update the blog. Ryan spent yesterday on the couch with severe leg and arm pain and could not keep anything down. He started to run a fever in the middle of the night, and Les took him to Scottish Rite at 3 AM. Missy told me that she talked to them earlier and they were both in tears. Ryan had a seizure at some point after arriving at Scottish Rite. His pain is so high that they have basically knocked him out with strong morphine. They will be staying in-patient at Scottish Rite until the pain can be controlled and a plan formulated. Missy is driving there right now. She asked me to post this information and to ask for your prayers. They are obviously very worried.
Erin
Friday, April 24, 2009
whodunit??
Somebody left me some flowers in all my pots while we were gone. What an awesome surprise to come home to!! Please let me know who you are cause it'll drive me nuts not knowing who to thank!! They are just beautiful, and they're out by the pool, too. Thank you so much. We came home a day early. I had to call my doc Wed. afternoon as I was in so much pain and couldn't get any relief. She thought it sounded like a kidney infection and wanted to go to the ER so I could get an antibiotic. My hgb was only 6.4 so they kept me overnight and gave me three units of blood. I am so glad that drive home is now behind us. Les took Ryan to the clinic this morning to see what his counts are. His gums have bled a little bit so he may be needing some more platelets. I changed my appt back to today so maybe I can get my chemo. Karen and I are gonna drive down and check it out. Thanks for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, April 22, 2009
A week without a hospital, not quite...
Missy has had a lot of pain in the left kidney area the last couple days. She called her Dr at Emory and they suggested a quick trip to Emergency, haha.
2 hours in the waiting room, 1 hour in the emergency room, then the Dr finally came in. They shot her down to RT for a CT scan and a couple of x-rays. Her initial blood work came back very low, translation, spend the night. She will be getting 3 units. We are still awaiting the rest of the results. I just made it back to the Hotel. The kids hardly new we were gone. They are so independent. They ordered room service and are watching Idol ! Great kids (most of the time :) I will more as I get it. Les, Missy, Heidi, Will and SuperRyan (who is doing fantastic)
2 hours in the waiting room, 1 hour in the emergency room, then the Dr finally came in. They shot her down to RT for a CT scan and a couple of x-rays. Her initial blood work came back very low, translation, spend the night. She will be getting 3 units. We are still awaiting the rest of the results. I just made it back to the Hotel. The kids hardly new we were gone. They are so independent. They ordered room service and are watching Idol ! Great kids (most of the time :) I will more as I get it. Les, Missy, Heidi, Will and SuperRyan (who is doing fantastic)
Tuesday, April 21, 2009
more pics of day 2
This has been how I've felt a few times today and yesterday!! and NO, Les wasn't on the log ride with two hot girls by himself. Will was in front! :)
Our only bummer is that we didn't win a gigantic "Balto" at one of those rip-off midway games!
Universal pics
Pictures from today. We had a great time at Universal's Islands of Adventures. We got totally soaked on one ride. Oh my Goodness!! Was I really happy for just a bit that I didn't have hair? Les took the kids to get some dinner and I am resting. My mom made an appt for me today for accupuncture on Saturday. I never thought I'd try it , but I'm getting pretty excited about the thought of pain relief. I'll let you know. I'm gonna add a couple more pics. It's so slow if you do more than three. Love, MissyMonday, April 20, 2009
more pics
PICS FROM UNIVERSAL
It's a shame the kids don't really know too much about Jaws, or Beetlejuice, or ET. I think their favorite rides were the Simpsons and the Mummy.Intrrrrrrooooduuuuccccing BALTO!
This is Balto!! We've known him since the day he was born and have been able to play with him and watch him grow. He's really only about 5 weeks old, but his mom is pretty much done with him and his siblings. He was a gift from Rick and Barre'. We're missing him already.
His mom is a Siberian Husky (maybe 35 lbs) and his dad was a neighbor German Sherpherd. All I know is Sandy's daddy was a German Shepherd and we got her Easter weekend, too, and she turned out to be the best dog ever! So I'm taking that as a good sign.
Wednesday, April 15, 2009
Looking for good things.
Ryan filled up his quarter book yesterday. He was pretty happy about that. Can you tell? I think he loved being FINISHED ! The other picture is of my tulips Les bought me. Aren't they beautiful? I love bright yellow tulips. They've done their fare share of perking things up around here! I'm hoping tomorrow is a better day. I've been sick every day and haven't been able to keep anything down. I've been trying different pain meds and nausea meds, but haven't had much luck yet. Maybe tomorrow?? Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, April 11, 2009
Surprise, Shock, and Dismay!
It's been a crazy past couple of days. The SURPRISE is that Ryan is at the beach with the Lighthouse. As we headed down Thursday morning, we got a call from Smith that he was gonna go down for 3 days, so we offered our baby up for some fun!! My mom met us at Gwinnett with him. He still wasn't feeling that great, but he was pretty excited. He's coming home tomorrow. The SHOCK is that Les' high school friend who has been in Tanzania doing some missionary work has suffered a major stroke. How can that be?? We are still working on the details as you can imagine. I know they are trying to raise money to get him back to Canada, and I hope to post some of that info we maybe we can help. The absolute DISMAY is in the passing of Erin Buenger. I haven't thought of much else in the past couple of days. Please visit her website and offer some encouraging words to her family. She was such a full-of-life kind of girl that just had a way of touching your heart.
Today promises to be a busy day with soccer and cleaning up around here. I'm hoping some flowers are involved! Please keep praying for us and for our friends. Love ya'll! Les, Missy, Heidi, Will, and SuperRyanMonday, April 06, 2009
BLAH!!!
Ryan and I have both just felt like dirt for several days. The pain patch seems to be working on his leg pain. I've emailed for a pain med for me. I can't take anything with tylenol or motrin. Even some of my prescription meds have tylenol, so I've been avoiding those, too. I think the nausea is the worst part, though. Just nothing brings any enjoyment, and that has been tough. Please pray we feel better soon. Love, Missy
Monday, March 30, 2009
Could It Please Get Better?
I didn't get to update again yesterday with pics of Ryan's hours and hours of work getting ready for his yard sale. He has bagged up all his old toys he's tired of, priced them, and made a sign with his dad and grand-daddy's help. I guess that will be the plan for this weekend. We're starting chemo today a long way from where we should be in the blood count race. We had them checked today and
WBC 1.6
HGB 8.9
PLT(platelets) 11,000
ANC 700
Platelets are below transfusion level at the get go. We've never ever started this low, but we don't really have a choice. I'm hoping to just take him in to the clinic and get blood and platelets. Please pray that he gets through it without any trouble. Nothing else makes sense. Love, Les, Missy, Heidi, Will, and SuperRyan
WBC 1.6
HGB 8.9
PLT(platelets) 11,000
ANC 700
Platelets are below transfusion level at the get go. We've never ever started this low, but we don't really have a choice. I'm hoping to just take him in to the clinic and get blood and platelets. Please pray that he gets through it without any trouble. Nothing else makes sense. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 29, 2009
Our Dashing Gent!!
The three of us had a good night together. He's even already looking to next year. I am so surprised, but not disappointed. I'm gonna update again today with Ryan's news. I'm thinking it's a garage sale. You won't believe what he's been up to!
Wednesday, March 25, 2009
Our new round one is done.
Our schedule got a little off yesterday when they bumped up my appt at Emory, but my dad came through for us as he always does and took Ryan to see Dr. George. Sounded like the usual upbeat day from just the email we got back from Dr. G. We have been a little concerned with some bumps on Ryan's head just over where he had the Gamma Knife. We had emailed him with our questions, and we all think it is the titanium screws possibly working their way out. We're going to watch it for now, but Ryan was ordering himself a CT scan for this morning (that just happened to fall at the exact time his home-bound teacher would be here, Sorry Mrs. Jill!). His counts are still pretty low so we're going to recheck them on Monday, and probably move ahead as scheduled regardless. Can't give the *&%$#ing NB time to gather strength. Ryan apparently had a conversation about not getting accessed for his chemo, so we're looking into taking it by mouth. I'm gonna put a question out on the list-serv just to see if anybody has any experience with that. Otherwise things around here are rolling on. Will did go to soccer practice on Monday and had a good little work out, but was pretty sore today. I'm worried his heart just isn't it right now. We'll just have to see. Again, day by day! His spring formal for Perfectly Polished is this weekend, and I am just trying to wrap my head around all that that will entail. It will be a little bit easier, just picking up his tux (tails, this year! Won't he look sharp!) and not worrying with Heidi's dress, shoes, hair, makeup, etc. etc.etc.! The kids are out of school on Friday for a workday. Who knows if Heidi will get her driver's license or not this weekend. We've moved her appt. back the last couple of Fridays cause she can't get all the paperwork together and get the class finished. She's had lots of homework, and she doesn't get home till almost 6 everyday after soccer. They had a game Monday night way above Gainesville, but lost. I felt bad for them. They beat Buford Saturday afternoon which was a nice win for them. Anyway, thanks for your thoughts and prayers. Please pray for Ryan's counts to rise. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 22, 2009
A Soccer and Swim Kind of Weekend.
Ryan is doing great. He doesn't slow down too much. He went back to work with Les on Tuesday and they had his counts done at Coach Gary's clinic. He was happy to see Paige. She is so great with him. His hgb was over 9 and wbc over 2, but his platelets were only 15k. He has an appt at the clinic on Tuesday for a recheck. He played golf on Thursday with our friend, Rick. He had a great time and he hasn't stopped talking about it yet. Thanks, Rick!! We took Will to his rec game yesterday. He was able to warm up with the team and he played for just a few minutes, which is a HUGE improvement. We're hoping he'll be able to go back to practice this week with some modifications. Heidi had a game late yesterday afternoon in Gainesville, and her team beat Buford, which was unexpected, at least to me! Ryan's home bound teacher is coming back tomorrow. We have a swim team party today which should be fun for the kids. He still has another week off chemo. Hopefully, it is working. Thanks for your prayers.
Love, Les, Missy, Heidi, Will, and SuperRyan
Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 15, 2009
The boys are slowly getting better.
Here are couple of shots Dawn sent me from Friday night's St. Baldrick events. Thank you, Derek. He was able to meet his goal and even went over a little bit. I think Dawn said he went over $2700! It's the passion and efforts of people like Derek, and those of you who sent in money, that will help us find a cure. Ryan is feeling better. He had a script for Zofran in the computer at Publix. Will is feeling better, too. He went to school one day last week, but his feet were so swollen when he got home, we had to make him stay home the rest of the week. Hopefully, he'll be back tomorrow. He hasn't thrown up in several days. Les and Ryan went out early yesterday and picked him up some golf clubs. Unfortunately, the rain is going to keep them from hitting some balls today. We have to get counts checked locally either tomorrow or Tuesday. Thanks for your prayers for us. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, March 13, 2009
Can you say "George Costanza"
Ryan came back to the office with me again today. He has spent most of the morning sleeping. I think he likes being able to open his eyes and make sure I'm close by. He slept very sound last night even after sleeping so much yesterday. He is still throwing up, a couple times today so far. Not sure if we'll make it to buy him some golf equipment, maybe tomorrow. I'm waiting on a new windshield to be installed in my truck then we will head home, check on Will and wait for Missy.
She had a good time last night with her friend Diane. She called her Dr. this morning and got the usual "we're not sure" results. They will be scheduling a MRI as soon as they can. What can you do ?? We will all just be happy to have her home. Les, Missy, Heidi, Will and SuperRyan
She had a good time last night with her friend Diane. She called her Dr. this morning and got the usual "we're not sure" results. They will be scheduling a MRI as soon as they can. What can you do ?? We will all just be happy to have her home. Les, Missy, Heidi, Will and SuperRyan
Thursday, March 12, 2009
Praying for good scan results
Fighting cancer is so very hard. Ryan popped out of bed this morning and followed me out the door to the car. He had planned to come to work with me but he has been feeling so nauseous lately I didn't think he'd be up to it. And he wasn't. He was either sleeping or throwing up at the office and continued at home, even after meds. He wants to go back tomorrow, we'll see. He says he wants to start playing golf ! If he comes back, he wants to hit the sporting goods store to pick up the necessary clubs, bag and golf shirt :) He cracks me up.
Will spent the day at the farm and came home looking much better. I believe he may be finally on the road to recovery and could very well be back to school full time next week. His two soccer teams may have to wait a little longer.
Missy had a CT scan yesterday and the results will be in in the morning. I'm hoping she will wait to call the Dr. until she gets home. I just have such an uneasy feeling about it. It's making my stomach queasy. I am praying hard tonight for clear, clean results. It has to be agonizing for her. She is attending a conference today and tomorrow on the other side of Atlanta so we expect her home by 5 tomorrow. I hope she's having fun with her friends that went with her.
So I will ask all of you to join me in pleading our case to the good lord above to bring us the results Missy and our family needs. I thank you for that. Les, Missy, Heidi, Will and SuperRyan
Will spent the day at the farm and came home looking much better. I believe he may be finally on the road to recovery and could very well be back to school full time next week. His two soccer teams may have to wait a little longer.
Missy had a CT scan yesterday and the results will be in in the morning. I'm hoping she will wait to call the Dr. until she gets home. I just have such an uneasy feeling about it. It's making my stomach queasy. I am praying hard tonight for clear, clean results. It has to be agonizing for her. She is attending a conference today and tomorrow on the other side of Atlanta so we expect her home by 5 tomorrow. I hope she's having fun with her friends that went with her.
So I will ask all of you to join me in pleading our case to the good lord above to bring us the results Missy and our family needs. I thank you for that. Les, Missy, Heidi, Will and SuperRyan
Sunday, March 08, 2009
Busy Boys!
This was the scene at our house this morning. Les and Rick assembled Ryan's new fort. He didn't feel much like playing in it. Maybe later this week. We've done three days of chemo and have 2 to go. He was nauseated today and his gums were bleeding. He slept a good bit, too. I think that was from the phenergan. Will took a big turn today, thank Goodness! He went over to my mom and dad's today and ate some noodles. When he came home, he wanted a club sandwich. He ate almost the whole thing and never got sick. He actually hasn't gotten sick at all today or yesterday. We're gonna keep him home from school tomorrow just to give him another day of rest. Well, I'm off to bed. Thanks for checking in on us. Please keep Ryan in your prayers that he handles the chemo well and that it is doing its job. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, March 06, 2009
Ready for the weekend !
Ryan woke up in a good mood this morning. We changed it up and gave him his new chemo at night. We needed to start treatment asap. I waited till he was asleep to start but as soon as I touched his line, his eyes popped open. He is sooo agreeable and does what we need him to do without a single objection. It's truly amazing.
Will is not any better. Even with strong anti nausea medicine, he is still getting sick several times a day. I am giving it until Monday then taking him to Scottish Rite if there is no significant improvement. It is all a little overwhelming at times. Just trying to keep it all going as normal as possible and keep praying hard for our 3 fighters ! Les, Missy, Heidi, Will and SuperRyan
Will is not any better. Even with strong anti nausea medicine, he is still getting sick several times a day. I am giving it until Monday then taking him to Scottish Rite if there is no significant improvement. It is all a little overwhelming at times. Just trying to keep it all going as normal as possible and keep praying hard for our 3 fighters ! Les, Missy, Heidi, Will and SuperRyan
Thursday, March 05, 2009
Ryan's better; Will, not so much
Temodar down, and irinotecan running. I'm trying to stay awake another 40 minutes to flush his line. He's very worried he's going to be sick. He was much better today. Great, in fact! The pain patch is working great. There hasn't been much change in Will. He woke up getting sick this morning. I gave him one of his Zofrans and he took a nap, but woke up still being sick. I'm not sure why it didn't work so well today. We're just working on keeping him hydrated. We're really hoping Will is gonna turn a corner here in a day or two. Tomorrow is day 8. Thanks for checking in on us and thanks for your prayers for us. Love, Les, Missy, Heidi,Will, and SuperRyan
Wednesday, March 04, 2009
Day 2, ABT over!
Poor Ryan started throwing up last night-from the anesthesia, I'm sure- and woke up throwing up this morning. He couldn't keep water down and got sick just thinking about taking nausea meds. I called Egleston and we went down for IV zofran and red blood. Hopefully, the nausea won't return, but now we've got zofran that melts on your tongue, if we need it. The bad news today is that Ryan bone marrow aspirates came back positive and ABT-751 won't take care of that. Les talked to Dr. George and the plan is to start Irinotecan and Temodar at home tomorrow. He responded well to these drugs before so we're hopeful they will knock it back down. They will do 2 rounds and then re-scan. Please, please pray this works. Ryan was so upset today when I told him we had to leave his port accessed. He doesn't understand why and we're going to have to tell him that his cancer is back again. We were really hoping that with ABT-751 being all oral, we could get by with just telling him this was his new pain medicine. That's not gonna work now. He did get a pain patch yesterday which is working good. He actually asked Dr. Katzenstein if it was something he had seen on TV and was just trying out on him. Where does he get that?? We were so glad that Dawn was there today. She came and visited him a couple times and I know that made him feel better. Will went with us so we could do some of his school work. The zofran we got for him worked good and he actually ate some lunch and dinner! He's still having a hard time getting around and has pain in his arms, hands, legs, and feet. Hopefully, we are another day closer to the end of HSP! Thanks so much for your prayers for all of us. Hugs to all of you! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, March 03, 2009
Day one ABT study
Long day at Egleston. We arrived early for labs, meeting with Dr's, echo-cardio and CT Scans. The plan was to get this out of the way and start chemo on Thursday. The first day of ABT-751 will take all day. The problem was, the blood came back low. Lower than expected. The study requires only 25K platelets to begin and Ryan came in today at only 18K. Normal range is 175K - 400K. After Ryan's CT, we went back over to the clinic to draw a little more blood and keep our fingers crossed that he made 7K more during our stay there ! We are still scheduled for all day Thursday but we may be getting blood and platelets instead of Chemo. If that is the case, Chemo will be pushed back to next week. Not what we wanted.
Missy took Will back to the Dr. this afternoon because he has been getting sick everyday. It is just part of the process of working though it. I think he looks a little better. Thank you for sending all of the notes and prayers to our family. Les, Missy, Heidi, Will and SuperRyan
Missy took Will back to the Dr. this afternoon because he has been getting sick everyday. It is just part of the process of working though it. I think he looks a little better. Thank you for sending all of the notes and prayers to our family. Les, Missy, Heidi, Will and SuperRyan
Monday, March 02, 2009
More Snow Pics
Snow fun!
I think we got the most snow (6-7 inches of real snow, not ice)I've ever seen here. The kids loved it. We lost power around 6:00 last night, but somewhere around 11:00 the overhead light came on and woke me up. It never got really cold in the house, just really dark.
We had a great visit at Egleston today. Dr. Katzenstein is always so nice and is just great with Ryan. He told us about several studies going on now and we all agreed that ABT-751 is the way we want to go. They will scan after every other round so I'm glad we'll be keeping a close eye on him. He is having bone marrows, an ECHO, and a CT tomorrow and will be able to start on Thursday. He's having significantly more pain today. I had promised him a stop at Toys R Us last week after his MIBG, but with the lateness of the hour we skipped it. I hated to leave Will as he started throwing up today, but Ryan really needed a distraction, and God willing, Will will be better soon. The distraction worked for about an hour. We picked up a play house that we really don't even know he can stand up in. He envisions hiding inside it and shooting Will with his paintball or airsoft gun through the window. That, I would love to see! I feel just so terrible for Will. He is having a hard time managing this illness. His stomach hurts, his arms hurt, his back hurts. He was supposed to go back to the dr. today, but their office was closed due to the snow. Hopefully, he'll see him tomorrow and he can provide some relief for his tummy. I hate feeling so helpless. Please pray that Will's discomfort will subside quickly and he will be back to his old self again very soon, and please pray that Ryan will be able to get the ABT-751, that it will destroy his disease, and that his marrows will hold up. Thank ya'll so very much for your prayers, love, and support. Wer'e so glad ya'll are on this journey with us. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 01, 2009
Come On Snow!
OK, don't laugh, but I just have to say that we are not usually the sick crowd. I can't get over how your life can change so quickly. I just don't want to get used to it and I don't want my kids to look back someday and think we were always sick. Will seems to be feeling better. We gave him some of our prescription nausea meds last night and that seemed to help his stomach pains. We're just trying to keep nausea and pain meds in him. He actually thinks he's been empathetic to Ryan all these years. Maybe this will help him see otherwise! The swelling in his right ankle has diminished greatly, but his arms are hurting now. No pain in his joints, just the muscles. The rash is a good deal lighter and hasn't spread anymore. It's hard to keep him with his feet up.
The kids are watching for snow. I hope we get some for them to play in, but I don't need anymore clothes to wash!
Les and I are trying to make some decisions about Ryan going to school, but I think we may have to wait till after our meeting tomorrow at Egleston. We'll have to see what sort of side effects he'll have from chemo, if he can even get it. Our friend, Katie aka Pinkey came and stayed with Ryan on Friday. He had a great time, as he always does with her! Thank you so much, Katie! We love you!
Next Friday is St. Baldricks. We are looking forward to it. If you'd like to donate to Derek scroll down a few updates and there is a link directly to his page. He is a little over halfway to his goal. We are so thankful to him and many others who are shaving their heads for childhood cancer.
That's it for today. Have an awesome Sunday and please pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
The kids are watching for snow. I hope we get some for them to play in, but I don't need anymore clothes to wash!
Les and I are trying to make some decisions about Ryan going to school, but I think we may have to wait till after our meeting tomorrow at Egleston. We'll have to see what sort of side effects he'll have from chemo, if he can even get it. Our friend, Katie aka Pinkey came and stayed with Ryan on Friday. He had a great time, as he always does with her! Thank you so much, Katie! We love you!
Next Friday is St. Baldricks. We are looking forward to it. If you'd like to donate to Derek scroll down a few updates and there is a link directly to his page. He is a little over halfway to his goal. We are so thankful to him and many others who are shaving their heads for childhood cancer.
That's it for today. Have an awesome Sunday and please pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, February 28, 2009
In the hospital ????
Never has this happen before ! Will's school called with Will experiencing leg pain and could hardly walk. Missy's mom went down to the school to pick him up and take him to the Dr. about 2:30. An X-ray shows a fracture in his foot but he also had a major rash on his legs. The Dr. sent them over to the hospital where Missy met up with them. Will and Missy spent the night after a quick diagnosis of HSP. Its an infection or virus stemming from a sore throat or cough, which he had. Kind of crazy to have to stay over but what can you do.
Ryan's and our friend Katie came over yesterday and hung out with Ryan most of the day. Ryan has not been going to school and an independent hair has him wanting to stay at home by himself ? We will be working out a home school schedule for him next week. On Monday, we have an appointment at Egleston to hopefully qualify for a stage II trail on ABT-751. This trial has shown significant results in reducing and stabilizing wide spread relapse. If Ryan's blood counts can hold up to this new chemo we will be in good shape.
So hopefully Will and Missy will be home shortly. Its going to rain all day so we will be likely staying in but tomorrow we are supposed to get 2-4" of SNOW!!! that's spells FUN!!! Play safe, Les, Missy, Heidi, Will and SuperRyan
Ryan's and our friend Katie came over yesterday and hung out with Ryan most of the day. Ryan has not been going to school and an independent hair has him wanting to stay at home by himself ? We will be working out a home school schedule for him next week. On Monday, we have an appointment at Egleston to hopefully qualify for a stage II trail on ABT-751. This trial has shown significant results in reducing and stabilizing wide spread relapse. If Ryan's blood counts can hold up to this new chemo we will be in good shape.
So hopefully Will and Missy will be home shortly. Its going to rain all day so we will be likely staying in but tomorrow we are supposed to get 2-4" of SNOW!!! that's spells FUN!!! Play safe, Les, Missy, Heidi, Will and SuperRyan
Thursday, February 26, 2009
Wanted: Powerful Chemo to Kill NB, but not our child
We played phone tag a bit today with the clinic. Les talked to Dr. G. just before meeting us at Asia Cafe for mine and Ryan's favorite sizzling rice soup. There was more uptake in Ryan's skeleton. I'm sure we'll be scheduling bone marrows next week. Our options at this point are ABT-751 which is a phase 2 study, or the Nifurtimox. I know lots of patients (and mommys and daddys) love Dr. Sholler in Vermont who does the Nifurtimox. We want something that will work fast to stop this beast, but we have to be very careful about his marrow functioning. His marrow is very tired and beat down and doesn't rebound well from hard chemo. We have no stem cells to rescue him. The good news was that there weren't any tumors. We are very disappointed, but certainly not surprised. We knew the pain was there for a reason. So please join us as we pray for our SuperRyan. There are so many things he should be doing besides this! We need prayers that treatment will move quickly and that he will once again respond positively and his marrows will stand up to what the chemo doles out. Love ya'll, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, February 25, 2009
Now we wait.
It has been the longest day I've had in a while. It's actually been two days cause I don't think I closed my eyes any longer than 5 minutes all night last night. Ryan slept with me while Les is out of town, and it was nice to be able to keep a close eye on him and reach over and rub his little arm or leg. We both went back to school this morning. He only had a half day, and I picked him up around 1:30 to take him to his scan. We got a call while we were on 85 saying one of their cameras were down and it would be 4:00 so we stopped and played in Target. It was 5 before they called us back and 7:30 before we left. We left a urine sample for HVA and VMA, too. We had to drive home in the dark and the rain which added just a little to the stress of our day. We stopped at Steak and Shake for a quick bite and we are SO glad to be home. I can't say much about the scan. It definitely wasn't completely dark. I'll just have to wait on the phone call. Thanks for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, February 24, 2009
Quick? At the hospital?
I still can't believe how quickly everything went today at the hospital. My dad drove us down and we had very little traffic. Even on the way home at 5:00 we managed to zip through pretty quickly. We even made it to pick Will up from soccer practice at the right time. The day at the hospital started off badly when Ryan wanted an IV instead of his port access. The nurse really wanted to do the port access as it's a sure thing so I made the executive decision to go with it. Hey, when you've got a nurse standing there ready to go sometimes you've just gotta go with it. We even skipped the Emla. He wasn't too happy, but I can tell you that we have put Emla on his port for almost 5 years and I never put anything on mine, and it DOESN'T hurt! He was pretty mad at me, but after a quick text to Morris and his arrival on the scene, all was fab-u-lous. Thank you, Morris!! He stayed the rest of the time and even walked us all the way to the elevator playing and laughing with Ryan the whole time. I think my Dad was pretty amazed at him. He has such a gift with all the kids and CHOA is darn lucky to have him. I, personally, don't even think he needs to have a job. He just needs to be there to play with the kids. Like I said, the nurse was right there to access him, and then Toni was right there ready for the injection. It was all in record time. And-he was all smiles when we left. I hope tomorrow goes as well-the results anyway! I don't care if the rest goes to heck in a handbasket, I'm just after a good dark scan. Please pray with us for just that. Thank ya'll so, so very much for your love, support, and many, many prayers. We feel the strength everyday that comes from ya'll. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, February 20, 2009
This morning's visit
Ryan got a bag of fluids and an IV antibiotic. They drew blood cultures, but I don't know with it being Friday, when we'll hear on that. He's still complaining of pain and we've got scripts for Lortab and another pain med similar to Motrin. He's got an MIBG injection on Tuesday and scan on Wednesday. Please start praying now that the scan is dark and nothing shows up. Thanks so much. We love ya'll. Les, Missy, Heidi, Will, and SuperRyan
Prayers, please.
We were up during the night with Ryan. He woke up complaining of pains in his leg, arm, and ribs both front and back. He had a low grade fever last night, but we never called the on-call doc. We did give him Tylenol. His ANC should be high enough to keep him out of the hospital, but you never know. Les is taking him down to the clinic today. Please pray that these pains and fever are due to something, anything other than cancer. Thanks, Les, Missy, Heidi, Will, and SuperRyan
Monday, February 16, 2009
Fun at the Circus
Here are just a few shots from the Circus on Saturday. The kids had a great time. Their cousin, Nick, came in Heidi's place. I can't believe I have missed her first three games! She's got a home game on Friday and I definitely plan on being there to watch her play. Les and I went to dinner and a movie for Valentine's. I don't think we've ever done that before, certainly not in a long time. I had to take a nap first so I could stay awake that late! We've enjoyed a nice day off today. I took the boys to see Pink Panther and we stopped at Chucky Cheese to play a few games. Dinner is just about ready, but I wanted to get these pictures on the blog real quick. I need to have accomplished something today! :) Have a great week. Thanks so much for your prayers for Ryan. He hasn't complained of his arm anymore. He has one more day of Accutane and then his sweet lips get a break. Thank Goodness! Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, February 12, 2009
Happy Valentine's Day!
Ryan's spunk is back. He is feeling much better and was back at school today. I guess we've had our heads in the sand. It hadn't occurred to us that today was the last day before Valentine's and the kids would have their parties. I don't even know if his class exchanged Valentine's. A few knocked on my door and brought me candy and cards. They are all so sweet. He had a nice surprise after school hanging on the mailbox. Jena's mom had delivered a package from Jena of candy and a cute STUFFED weiner dog. Thank you, Jena and Jenifer! We miss ya'll! The kids are out of school tomorrow and Monday. I have to work tomorrow so Les is taking the day off to take care of them. We're having the furnace and heat pump replaced tomorrow, too. The system is about 20 years old and is on it's last leg. I guess that's my Valentine's Day present (and my birthday, my anniversary, and probably Christmas!). Just kidding. Those of you who know Les, know he doesn't worry too much about money. It's just not something he stresses over. Well, I am glad it's Friday. We've got tickets to the Ringling Bros. Circus on Saturday. I'm bummed that Heidi wants to play her soccer game, but she is old enough to make that choice. The boys' cousin Nick is going to come with us. I'm really looking forward to it. Thanks for checking in on us. We're all doing so much better. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, February 10, 2009
Still just uch!
Ryan is still feeling pretty puny. There are so many bugs going around. He is still complaining of his upper arm hurting, too. If it doesn't show some turn around tomorrow, we'll probably go to the clinic on Thursday. Please pray it does.
Sunday, February 08, 2009
Ryan's night at the Rik'z
Ryan had a busy, fun weekend while we were at the Ritz. He spent Friday night at Rick and Barre's, and they took him to Will's basketball game on Saturday. Will had a great game and his team won. They shot their air-soft guns (I think Rick was the target!) for a while and then headed to the farm. Ryan's buddy Max came and spent the night with them. Poor Max was sick when I got to the farm early this afternoon to pick up the boys. I should have called to check on him, but I haven't really slowed down. Hopefully, it is something short-lived and hopefully, Ryan won't get it. He is complaining of pain in his arm, and I know he is worried about it. He got some Tylenol before bed. Please pray that it is better tomorrow and only due to over exertion this weekend. Thanks for checking in on Ryan. Please pray for him and all our little friends fighting. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, February 03, 2009
St. Baldrick's is Coming!
Ryan had a good check-up with Dr. George today. His counts are ok. His platelets are actually over 50k! He got his infusion of Zometa and a new script for Accutane. The two weeks he's off goes by so fast. He's been back to school for over a week. I haven't gotten used to it yet. I worry about him getting sick, but he just needed to go back. I'm glad we're there together! Heidi and Will are both busy with soccer. Will was surprised when Heidi came home from practice on Friday with a note from the boy's JV coach. Will gave him a call and he invited him to join the team. He's only practiced two days with the team, but so far he loves it.
We're joining forces with one of the best nurses you'll ever meet, well, actually her brother, Derek. He is shaving his head for St. Baldrick's in Ryan's honor! Dawn has the best family! Below is Derek's note. Feel free to copy and send to anyone who might offer their support. Thanks for checking in on us and for your love and support. Please pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
My name is Derek Carver and I am going to be participating in an event called St. Baldrick’s this year on March 13th at Fado’s Irish Pub in Buckhead..St. Baldrick’s is the world's largest volunteer-driven fundraising event for childhood cancer research! I have decided to join the army of volunteers and donate my head to be shaved to help raise money in the attempt to helping children and teens fighting cancer. A child is diagnosed every 3 ½ minutes, and each one is a very special life we can help save. In 2008 alone, over $15 million raised by St. Baldrick's volunteers has been committed to finding new cures and help fund childhood cancer research.
You may be asking yourself, “Why is Derek shaving his noggin?” Well, not only is it a tremendous cause, my sister, Dawn, has been a pediatric oncology nurse for Children's Healthcare of Atlanta since 1995. That’s about 14 years for you non-math majors. Ha Ha! She asked me last year to attend one of these events and I was overwhelmed with the people who volunteer to get their heads shaved. Some do it every year but this happens to be my first. My sister has been involved with numerous benefits and activities, like St. Baldrick's, to not only give care for these special children, but to raise funds for cancer research. Also, my mother, Betty, is a Breast Cancer Survivor. So I have been affected personally by Cancer and I am sure you have had a loved one or just know someone who has been affected in some way by this dreadful disease. So what I am asking is for you to open your hearts and your wallets to donate to help fight childhood Cancer. You can go to my webpage at: www.stbaldricks.org/participants/shavee_info.php?ParticipantKey=2009-60461
I will also be honoring one of Dawn’s many favorite patients, Ryan “Super Ryan” Morgan. Ryan is a very cool 10 year old who was diagnosed with Stage IV Neuroblastoma in 2004. He went through multiple rounds of chemotherapy, surgery, radiation and 2 stem cell transplants to treat his disease. He unfortunately relapsed in April of 2007. Since then he has continued to undergo more chemo, surgery and radiation to fight his tumor. You can read more about Ryan on the website that his parents Les and Missy have set up at: http://superryan.blogspot.com/
As we face these tough economic times, I appreciate your recognition that childhood cancer is even tougher. Thank you for joining me to help these kids who need our help now. Please feel free to forward this email to anyone that you know that may be interested in helping out this tremendous cause.
Sincerely,
Derek Carver
We're joining forces with one of the best nurses you'll ever meet, well, actually her brother, Derek. He is shaving his head for St. Baldrick's in Ryan's honor! Dawn has the best family! Below is Derek's note. Feel free to copy and send to anyone who might offer their support. Thanks for checking in on us and for your love and support. Please pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
My name is Derek Carver and I am going to be participating in an event called St. Baldrick’s this year on March 13th at Fado’s Irish Pub in Buckhead..St. Baldrick’s is the world's largest volunteer-driven fundraising event for childhood cancer research! I have decided to join the army of volunteers and donate my head to be shaved to help raise money in the attempt to helping children and teens fighting cancer. A child is diagnosed every 3 ½ minutes, and each one is a very special life we can help save. In 2008 alone, over $15 million raised by St. Baldrick's volunteers has been committed to finding new cures and help fund childhood cancer research.
You may be asking yourself, “Why is Derek shaving his noggin?” Well, not only is it a tremendous cause, my sister, Dawn, has been a pediatric oncology nurse for Children's Healthcare of Atlanta since 1995. That’s about 14 years for you non-math majors. Ha Ha! She asked me last year to attend one of these events and I was overwhelmed with the people who volunteer to get their heads shaved. Some do it every year but this happens to be my first. My sister has been involved with numerous benefits and activities, like St. Baldrick's, to not only give care for these special children, but to raise funds for cancer research. Also, my mother, Betty, is a Breast Cancer Survivor. So I have been affected personally by Cancer and I am sure you have had a loved one or just know someone who has been affected in some way by this dreadful disease. So what I am asking is for you to open your hearts and your wallets to donate to help fight childhood Cancer. You can go to my webpage at: www.stbaldricks.org/participants/shavee_info.php?ParticipantKey=2009-60461
I will also be honoring one of Dawn’s many favorite patients, Ryan “Super Ryan” Morgan. Ryan is a very cool 10 year old who was diagnosed with Stage IV Neuroblastoma in 2004. He went through multiple rounds of chemotherapy, surgery, radiation and 2 stem cell transplants to treat his disease. He unfortunately relapsed in April of 2007. Since then he has continued to undergo more chemo, surgery and radiation to fight his tumor. You can read more about Ryan on the website that his parents Les and Missy have set up at: http://superryan.blogspot.com/
As we face these tough economic times, I appreciate your recognition that childhood cancer is even tougher. Thank you for joining me to help these kids who need our help now. Please feel free to forward this email to anyone that you know that may be interested in helping out this tremendous cause.
Sincerely,
Derek Carver
Wednesday, January 28, 2009
Chemistry fun!
Here are a couple pics of Will and Ryan playing with dry ice. It packed our yummy dinner that arrived today from our friends, Carrie and Tom Pinotti. Thank ya'll so much! They boys are already asking when we can get some more! Will's team won their basketball game last night. I think the season is winding down pretty soon. I love basketball season cause game's are never canceled, the season doesn't drag on with make-up games, and all the games are indoors! Soccer has already started. Heidi has been going to conditioning since the first of December. Try-outs were finally last week. Heidi will be playing Varsity for her school, and Will made it to the last day of try-outs and they cut him at the end of the day. I'm proud of him for going and giving it his best. He was pretty disappointed, but he'll make it next year. He's already signed up for rec soccer, and that is where the fun is! Thanks for checking in on us and for your many prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, January 23, 2009
I can take a deep breath.
Les talked to Dr. Rapkin this afternoon and the word is his MRI's looked good. I felt they would be, but there is always that doubt. That terrible, terrible doubt! These results will be added to his treatment history and all of that will be sent to St. Judes to see about the 3f8 clinical trial there. We need to do something to try and protect the rest of his body. If only it worked like the intrathecal antibodies do. Ryan asked me this morning if I thought he would ever get his port out. He really wants his Ommaya port out, and I really don't know why he can't have it removed. You really can't see it with his hair having grown in, but we both know it's there. Tomorrow night he is spending the night at the Atlanta Zoo with Camp Sunshine. I'm glad it has warmed up a bit. He won't be sleeping outside, but they will be walking around outside looking at the animals. Heidi is off to a girlfriend's sleep over. It's her sweet 16. I can't believe our girl will be 16 next month. She's doing a great job driving. After sitting at the soccer field for an hour today waiting for her to finish, I am ready for her to start driving herself. Will has a basketball game tomorrow. His team is doing pretty good. I think they've only lost one game and that team was really tall! Well, thanks for checking in on us and thanks for your many prayers for Ryan. Please pray for a cure for all cancers soon. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, January 21, 2009
Today was pretty tough. We headed out at 6am, 18 degrees. This is the first time he has had to do both MRIs back to back. He watched "The Simpson's" during both MRIs which was a nice distraction. He tried really hard, as usual, but he needed a little break three quarters of the way though. His neck began hurting really bad. We also had his labs drawn. We should hear results tomorrow. These test results, along with others will be sent to Sloan to wrap up that trial and then their findings with Scottish Rite and Egleston reports, will go to St. Judes in Memphis to start down the next possible path of humanized antibodies to help protect the rest of his body. He spent the rest of the afternoon at my office, working. We brought a play station to keep him busy. That along with snacks and root beers! who would want to go home? Thanks for your many prayers for our tough guy. He is an unstoppable trooper who continually amazes us. Les, Missy, Heidi, Will and SuperRyan
Tuesday, January 20, 2009
MRI tomorrow.
Tomorrow are Ryan's brain and spine MRIs. Please say prayers that they continue to be clear. and, please pray that Ryan will have an easy time of it. We're gonna rent a movie to hopefully keep him focused on something other than the banging and clanging of the MRI. He had a good weekend. Les took the kids and Ryan's buddys Matt and Rick to the Gladiators game. They swung by Hooters to see the new magazine with Ryan's pics in it. They brought home several copies. Ryan was his usual celebrity self at Hooters. Some of the same girls that were at his party were there and came by to sign his book and say hey. He was pretty happy about that. Yesterday we all had dentist appts. We all got good check-ups except Ryan's gums seem inflamed. I'm sure that's the Accutane. He's only got tonight and tomorrow morning doses left! Thanks for your many prayers for Ryan and all of us. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, January 16, 2009
Brrr!
Brrr! We are freezing our hineys off. Not Ryan, though, cause he's half-Canadian! Ryan is doing good. I wish he were at school, though. He is so far behind. He has a teacher that comes out twice a week, but there is just so much to cover. Until his ANC comes up he's just gonna have to be behind. I don't need him or me sick. I say that as I'm thinking about going back to work! We met Dad yesterday after work for a movie. "Bedtime Stories" was my kind of movie! No guns, no half-naked girls, no bad language. A great family flick! I definitely recommend it. We're planning on taking in a Gladiators game this weekend to benefit CURE. Will and Ryan love that! Have an awesome weekend. Stay warm. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, January 13, 2009
A wing and a prayer
We've got a week of Accutane down. His sweet little face is peeling and his lips are dry and cracked. Another whole week to go! We got an email from our friend, Tonya. Pictures of Ryan's birthday party at Hooters is in the new magazine available at any Hooters. We'll be checking that out soon. Be sure and get your copy so Ryan can autograph it! It is sure to become a collectors edition !! Next week Ryan will have a couple of MRI's to close out the study in New York. We are hoping that these will also suffice if we get accepted in the St. Jude, Memphis antibody study. See ya at Hootsky's !
Les, Missy, Heidi, Will and SuperRyan
Les, Missy, Heidi, Will and SuperRyan
Thursday, January 08, 2009
Honey and Cinnamon When Mommy Feels Bad
That was on my list of "favorites" this morning by Ryan. He is so thoughtful- just like his Daddy. He is SO like Les sometimes I call him Les Jr. He loves that! Ryan's teacher is coming back today. We're just going to hang close to home. It has turned cold again. Have an awesome day! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, January 06, 2009
Perfect, that's him!
Dr. George thought Ryan looked "Perfect" today. I loved hearing that. He hadn't gained any weight to speak of, but I think he was a little taller. His platelet count has gone up to 48,000 so that was good news, but his hgb. was only 8.2 and his wbc was something like 1.5, Dr. G. thought he might be fighting something. Les and Heidi have both had colds so that is very likely. We've got to get counts rechecked in two weeks. He got his IV dose of zometa, and we picked up new scripts for the Accutane. I thought he had another week off, but after checking the calendar, he doesn't. The two weeks off the Accutane goes by so fast. My friend, Angie, dropped off some Arbonne lip protection for him, so we'll get to try it out before I thought. Thanks, Angie! Ryan's teacher comes in the morning and I have chemo at 1:30. thanks for checking in on us. Please keep praying for our sweet boy. and please pray for our friends Jackson, Joshua, and Patrick, and for their mommys and daddys. Please pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, January 01, 2009
Happy New Years !
If you click on the pictures, it will enlarge so you can see the beautiful pictures that Lynn Crow took. We are going to enjoy them forever! Thank you so much, Lynn and Isaac! The picture below is Ryan and his buddy, Rick. Rick is Morgan (Will's friend) and Ansley's (Heidi's friend) dad. We spent New Years eve at their house chaperoning Ansley's party. I fell asleep, but woke up before midnight. Fortunately, Heidi's friends don't need a lot of chaperoning. They're a great group of kids. Ryan went down to Matt's on Tuesday and spent the night. Matt's mom took them bowling and to play games at Stars and Strikes. Ryan had a great time and won 1000 tickets on one game! Thanks, Christy! He wanted to go play with his buddy, Max, today, but was just so tired. His tummy hurt a little and he felt nauseated, but nothing a little medicine couldn't fix. It was a good thing he stayed home, though. Maybe he can go play with Max another day. Thanks for checking in on us. Happy New Year! Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, December 25, 2008
Was Santa ever good to us!!
Oh My! Santa was so good to all of us! Ryan had such a hard time going to sleep last night. He was so excited. I finally had to lie down with him so he would drift off. I did, too! He was the first one up at our house, of course! He was so excited to see what Santa had brought him. He never even mentioned the miniature horse! He was so busy unwrapping and plugging batteries into things. Thank you to all the Christmas angels that worked so hard to make this a special day for us. We are enjoying our day together. We knotted a special blanket together last night. I've got pictures to post, but can't due to tech. probs. I'll try again later. Merry Christmas, everyone! Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, December 24, 2008
Merry Christmas to all !
It's Christmas eve and all a calm at the Morgan house. Why? because so many people filled Missy's shoes and put together a fantastically easy, joyous, bountiful, memorable, heartfelt, love filled Christmas. For that, I thank you all from the bottom of my heart as there was no way we could have come close to pulling it all together this year. I know Missy says she's feeling good a lot but those are simple snippets of her day. The majority of her day she works harder than she should do try and care for our family the way she is used to doing.Lynn Crow shot the photo above and about 300 more. Hamilton Mill Publix brought the kids a present each and us a gift card. The decorating team that Kristin help put together really lifted us into and kept us in the Christmas mood, that was so important to us. We have had many, many visitors bringing us gifts and good tidings. We are very fortunate to have hundreds of people that care enough to go out of their way to bring joy into our lives. Most of you have been brought into our lives by the angel hallows that surround Missy and Ryan. They are good and caring. Both relish in bringing a smile to the faces of everyone they meet. They are why we have a small army helping our family through the toughest of times.
So Thank you again, one and all, and especially to my Missy and Ryan. With Hope and Belief, Merry Christmas. Les, Missy, Heidi, Will and SuperRyan.
Sunday, December 21, 2008
A Wonderful Holiday Gathering!
Here are a couple of pics from our wonderful visit today with the Howards. I hope you can see Lauren's little baby bump. Isn't she cute? She is so excited about becoming a mommy, and so is the rest of her family. They are such an awesome family how they love each other and support each other. I hope some of Steve and Pat's magical parenting skills rub off on us!
He's counting down the days...
I was surprised last week to see that Ryan already has 60 ornaments on his Lunch for Life Christmas tree. Thanks, Cheryl and Nanny and Granddaddy! I knew it was that time of year again, but I hadn't put anything on his website because so many people have reached out to help us personally these past few months and I'm not about to ask you to do more. You can learn more about Lunch for Life at the link above or to the left, but it raises funds specifically for Neuroblastoma.
Ryan is doing ok. He is so dried out from the Accutane. 2 more days. He finished radiation on Friday. Thank you, Karyn, and all the wonderful women who took care of him. They arranged for Georgia State Patrol officer, Curtis Bradshaw, to meet Ryan and give him a special gift-a football signed by Mark Richt just for Ryan. He loved it and he loved sitting in the patrol car and turning on all the lights! Thank ya'll so very much!
We are looking forward to a visit from our friends, the Howards, tomorrow. It will definitely be a fun time. Thank you for your prayers for Ryan and for me. Please keep praying for a cure for this terrible disease and a cure for all cancers. Pray for all the children fighting, for Jackson and for Joshua, and so many others. Hold your family and friends close and be thankful for everyday. Love, Les, Missy, Heidi, Will, and SuperRyan
Ryan is doing ok. He is so dried out from the Accutane. 2 more days. He finished radiation on Friday. Thank you, Karyn, and all the wonderful women who took care of him. They arranged for Georgia State Patrol officer, Curtis Bradshaw, to meet Ryan and give him a special gift-a football signed by Mark Richt just for Ryan. He loved it and he loved sitting in the patrol car and turning on all the lights! Thank ya'll so very much!
We are looking forward to a visit from our friends, the Howards, tomorrow. It will definitely be a fun time. Thank you for your prayers for Ryan and for me. Please keep praying for a cure for this terrible disease and a cure for all cancers. Pray for all the children fighting, for Jackson and for Joshua, and so many others. Hold your family and friends close and be thankful for everyday. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, December 17, 2008
What a great team at Athens Regional!
This is a great group of women who have really made Ryan's 2 weeks of radiation fun and something to look forward to. Thank ya'll so much for making him feel so comfortable and at ease. The other picture is him digging into his stocking they made for him
which is full of toys and candy. He has 2 more days to go, and hasn't slowed down a bit. His lips are pretty dried out from the Accutane. I tried to get a picture of Heidi's Powder-Puff football game tonight, but I was just too far away. It misted rain on and off the whole game, and I was very glad for the game to be finished, even if her team didn't win! Thanks for checking in on Ryan and all of us. Love, Les, Missy, Heidi, Will, and SuperRyanSaturday, December 13, 2008
Here's those pics!
Here's a great picture of the front of the house with the decorations. Doesn't it look like it has a warm, beautiful glow? We added the colored lights across the front. They are a Ryan must-have. We just love pulling up to the front and seeing the lights. The other picture is of the kids' Christmas tree. It has all their hand-made ornaments from over the years and one or two that we buy that signifies something from our year. This year we found the perfect ornament to add to the tree- a yellow taxi cab. It will remind us of our trips to NY (though I'd just like to forget some of it). Ryan is feeling good. His buddy, Matt, spent the night with him last night. It was great to see them playing like usual. He is half-way done with radiation. It seems to be going fabulously. We did a little bit of shopping today. He and Will went home with their buddy, Jackson. We are having some family pictures made tomorrow. Thanks Kristin, for setting this up for us. Thanks for your many prayers for us. Please keep praying for Ryan's cancer to completely go away with this treatment. We love ya'll! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, December 09, 2008
Feeling good!
Here's Ryan and Dad just relaxing and watching a movie. Just like it should be! We have loved hanging close to home and we have really, really enjoyed our company. Les' cousin Kim and his wife Katherine arrived Saturday night and left this morning. We had a great visit with them, but next time Nick has to come with them! The second picture is Ryan with his finished Star Wars leggo spaceship. He and I had fun putting it together. It was a gift from the girls at radiation. They made him a stocking and he gets to take something out each day. He was so excited about that. Thank ya'll so much. My mom took him for radiation today so I could take a nap. I'm not sure I could have gotten him there without falling asleep at the wheel. We had a 9:00 appt at the Aflac clinic for labs, zometa, and to pick up a new prescription for Accutane. He starts that tomorrow for 2 weeks. The zometa is not a chemo, but a drug to strengthen his bones. His Hgb and wbc were both still good, but platelets were 13k. Please pray for his marrow to make more platelets. It's hard to keep him from being rough. We broke all the rules and ate pizza (thanks, swim team!) in the living room in front of the tv. It's funny how something so simple can get the kids jazzed. Well, thanks for checking in on us. Please pray for the eradication of Ryan's cancer. We'd like to be able to knock out this disease and move into a more preventative phase of treatment. We would love to be able to prevent another relapse like we (hope) we did with his central nervous system. Have a great week! Love, Les, Missy, Heidi, Will, and SuperRyanFriday, December 05, 2008
TGIF
TGIF!! Ryan has had a good week. He isn't going to school right now so we've gotten to spend a lot of time together. I really love the mornings getting to snuggle and not have to go out in the cold. The home school teacher starts next week. We had the radiation simulation today. They aren't used to kids so Ryan is something special (I already knew that!). It went pretty quick and we got a schedule set up for next week. We got labs done at Coach Gary's on Thursday.His wbc is 5.3. I can't remember the last time it was this high. His hgb is 11. Ditto on that. His platelets are only 16k which is typical for him now. Dr. G (and us) is a little worried to start chemo with plts being so low, so we are going to do accutane and zometa. We'll go to the clinic on Tuesday for a 30 minute infusion of the zometa. This drug is given to women with osteoporosis for bone loss. It has shown to work on bony disease. I got the same drug just before Thanksgiving. It can give you flu like symptoms the first time you take it (it did me). We'll also pick up a script for the accutane. We hate how it dries him out, but at least it isn't summertime. We're looking forward to the weekend with everyone at home. The Lighthouse Christmas party is Sunday and we can't wait to see friends old and new. Thanks for checking in on us. Please keep praying for Ryan to feel good and for his cancer to be gone! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, December 02, 2008
Identities revealed !
"OPERATION CHRISTMAS"
'Twas a month before Christmas and all through the land
Santa's elves were all busy - faced with a very big plan!
A family needed us - that much was sure
We got word of the Morgan's from our great friends at CURE.
The emails were flying, the internet was quick
The cell phones were ringing, helping everything click.
Less than 48 hours to coordinate the fun
No-one was to busy... no, not even one.
Shopping and planning and thinking things through
There really, really seemed like a lot left to do.
Gently a prodding, a nudge if you will
"Give the project to Me and the needs I will fill".
Dear Father, we prayed, Christmas is all about You
Help us keep that in mind - so important - we knew.
While there at the house there arose such a clatter
Grandma and Grandpa came by to see what was the matter!
It all came together, each piece like a puzzle.
We even had pizza and lemonade to guzzle!
The trees were complete, every wreath with a bow.
We turned to each other - this is really great you know!
Thank You dear Jesus for a family to serve
A Savior to celebrate - much more than we deserve.
Lord bless the sweet Morgan's, protect them we pray.
Watch over them Lord, every night, every day.
May the boxes and bows bring a smile to each face.
Merry Christmas to all - Missy, Les, Ryan, Heidi and Will in this case!
by, Robin Pitts
Sunday, November 30, 2008
House Pics
Isn't it beautiful? We absolutely love it. Thank ya'll again so very much! If you click on the pictures, it will make it bigger. See if you can find the great message on the tree!
and more
The Morgans, the Pecks, and more Morgans!
Saturday, November 29, 2008
More Beach Pics
Me and Les, Cheryl and Gramma and Grampa celebrating Cheryl's birthday a day early, and Ryan and Macie.Beach Pics
Missy, Cheryl, and Les. Heidi and Macie.
We are so thankful!!
We are home from the beach! We just don't know where to begin to thank everyone. Thank you, Melinda for setting up the whole trip. It was just what we needed. We spent the entire day Thursday on the beach. The weather was gorgeous as you can see. The first picture is Ryan and Jay Peck out in the kayak. They flipped it shortly after this picture! The other picture is Ryan, Les, and Les' sister, Cheryl.
We owe another big thank you to the entire Peck family for joining us at Grayton. We always have such a great time with them and we love them dearly.
Jimmy is back in Vegas, Cheryl is back in Hawaii. We had a wonderful visit with them and we owe them a big thanks for coming out to see us. Thank you, Cheryl, for taking such good care of me.
We had a huge surprise waiting for us when we got home. Our house has been decorated for Christmas! It is absolutely gorgeous. They didn't leave a room without a surprise. There are towels and soap in the bathrooms, dish towels and cookies and treats in the kitchen, and treats in each bedroom including a stocking and pj bottoms for each of us. There is a life size singing Santa and a gorgeous live Christmas tree with a train around it. We are finding new little surprises everytime we turn around. Thank you Chuck, Robin, Caitlin, Emily, and Zack Pitts, Dodi M., The Greens, Katherine Davis, The Blantons, The Hess family, Jason ("Ricky Bobby"), Beth, Lynn, Robert, Cathy, Deanna, and Grace Ann. Ya'll are amazing. You have definitely put us in the Christmas spirit. We are so thankful for your hard work and your generosity. I am going to post pictures of the house after this post. I can only post a couple of pics at a time. Thanks everyone for checking in on us and for your prayers. We love ya'll! Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, November 24, 2008
Gettin' Tanked!
We are posting from the Aflac clinic today. We got here just a little after 8 this morning and should be out sometime before 4. What a long day, but I am so glad I got to see so many of our nurses, drs, and other folks that work so hard taking care of all these sweet children. Patty has taken fabulous care of Ryan and I. His uncle Jim came with us to keep Ryan busy and happy with the video games. He got blood and platelets to give him a little boost. We have decided to take a little get-away trip for Thanksgiving. It won't be same not being at the farm with my family, but we're trading in for what I know will be some much needed fun, rest, and probably a little mischief! Our friends, the Pecks are coming with us as well as Les' parents and his sister, Cheryl. We have been having a great visit with them. My friend Karen's parents' church brought in an entire ready to cook Thanksgiving dinner for us to throw in the car and take with us. Thank you everyone at Corinth! That was so perfect! Well, I need to get back and check on Ryan. You can't leave him and Jim unsupervised for too long! :) Thanks for checking in on us and for your many, many prayers. We love ya'll and we hope you have a very happy, full, and blessed Thanksgiving. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, November 18, 2008
Back on Chemo
Ryan checked in with his Dr. today. No word on his counts yet, I'm sure they are just barely OK. We will start the 1st of 5 days of IV chemo here at the house. It is so much easier for us to take care of it here while he's sleeping and he is far less likely to get sick. We are also hoping that we can start radiation quickly here in Athens, what a break that would be not to have to drive to Emory everyday. Ryan's question to Dr. George was "will my hair fall back out with this chemo"? - No. "Can I get my Ommaya Port out"? - No. "Can I get this plate out of my head"? - No. There you go. We are all looking forward to the arrival of Jimmy and Grandma and Grandpa, just two more days! A little bird has told me that Missy had some good news over on her page..hmmm... Thanks for being there for us and sending a loud and clear request to the big guy! Lots of love, Les, Missy, Heidi, Will and SuperRyan
Thursday, November 13, 2008
Relax it's only cancer
It was a smooth, efficient day at Scottish today. About an hour and 3/4's to finish up. The spot on his knee did not look to have increased in size from the last scan and for that I am very thankful. There was a smaller spot on his shoulder also. I took the opportunity to tell Ryan there was a little something on his knee. He immediately looked me straight in the eye, worried, and asked if it was DIC, I said "no, it's just a little cancer" he said "whew" . Amazing. We then swung by the neurosurgeons office and agreed on 2 more weeks of Keppra at half dose and then he is finished with that medicine after 7 months, Yeah!!
I am expecting some low dose chemo and radiation to take care of this two spots and move on from there. Thank you as always for keeping such a caring eye on our Ryan. Sincerely, Les, Missy, Heidi, Will and SuperRyan
I am expecting some low dose chemo and radiation to take care of this two spots and move on from there. Thank you as always for keeping such a caring eye on our Ryan. Sincerely, Les, Missy, Heidi, Will and SuperRyan
Wednesday, November 12, 2008
Perspective...
Missy's mom and dad took Ryan down to Scottish today for his MIBG injection. Scan will be first thing in the morning. It wasn't too long ago that we would stress like crazy during this time. Now tomorrow is just another scan and the stress has moved to chemo at Emory for Missy. Everyday is stressful. She is doing so well compared to last week. It gives you that feeling like, "are you mess'in with me"? So even though we are on our way to image a know spot on Ryan's leg, and praying it has not spread, Missy's urgent situation is just so much greater. So we are praying for smooth sailing tomorrow and just no bad news.
Off to the left, under "Links", Missy now has her own page. It has sure taken off with the number of visitors, now if we could just get it updated!! Thank you for holding this family in your thoughts and prayers. Love Les, Missy, Hedi, Will and SuperRyan
Off to the left, under "Links", Missy now has her own page. It has sure taken off with the number of visitors, now if we could just get it updated!! Thank you for holding this family in your thoughts and prayers. Love Les, Missy, Hedi, Will and SuperRyan
Sunday, November 09, 2008
Correction
Apparently that was Jeff Foxworthy! that came over with his brother Jay yesterday. Thanks for bringing him out with you Jay, I can see where he gets his sence of humor from! And again, many, many thanks for all you have done for Ryan. He will not forget it. (Smith said Jeff could take a little joke!)
Missy has had another good day, busy, busy. She made it to Heidi's soccer game for a while and got to enjoy some fresh air and sunshine. She has eaten more today than in the last 5. Still not much but better than nothing. Thank you for all your notes and visits to Missy, I truly believe they have lifted her spirits way beyond where I thought it was possible. Love, Les Missy, Heidi, Will and SuperRyan.
Missy has had another good day, busy, busy. She made it to Heidi's soccer game for a while and got to enjoy some fresh air and sunshine. She has eaten more today than in the last 5. Still not much but better than nothing. Thank you for all your notes and visits to Missy, I truly believe they have lifted her spirits way beyond where I thought it was possible. Love, Les Missy, Heidi, Will and SuperRyan.
Saturday, November 08, 2008
A good day
Just can't keep a good women down. My game plan was to keep Missy in a tranquil environment and hopefully avoid coughing and nausea. That is clearly not her element. She had a very good day with many visitors.
Ryan has been waiting on a very special present from his good friend Jay and his brother Geoff. Today they came out to the house with Ryan's kill, a beautifully mounted deer. Ryan has a very special plan for the 7 point that he has shared with just a few people. I will let you know after completion. Thank you both for making Ryan's day, Jay had us all in stitches. 
Thank you to all our friends that came over to help us out today. It was great medicine for Missy and Ryan. Love Les, Missy, Heidi, Will and SuperRyan
Friday, November 07, 2008
Missy
There are a lot of things that are wrong in this world. Tonight, Missy and I had to tell our three beautiful children that their mommy is dying. The only thing possibly worse than that, is losing a child. We have appreciated the support from all of our family and friends so much over the years since we started SuperRyan. I never, in a million years thought that I would have to type this on his page. Missy has been every bit as amazing as Ryan while fighting this hideous disease. She was full bore right up until last week, never a complaint about her condition, just constant worry about Ryan and the rest of us. It is still her main concern. I am not sure how and when Missy will be able to handle visitors, it may be just hit or miss depending on how she is feeling. She is on a number of medications for pain, cough and sleep. Our hospital appointments have been changed to Hospice care, our nurse will be here on Saturday. I will plan on having a book by the back door that you can sign if you stop by and she is not able to visit. I am asking for no food...it is a stressor just getting it together, getting everyone sat down and cleaning it all up, also, finicky kids don't help. Thank you for being there for us, praying for us and letting Missy know how much she is loved.
Sincerely, Les
PRAY
Missy did not get much rest last night. We had thought that after the full day she had yesterday and more laughter than the Dr. would have ordered, she would sleep a lot of the night. Her Chemo was relatively uneventful. Only sick one time. She is very tired today. We are waiting on two more units of blood, bringing her total to 6 units this week, and then plan to head home. It is going to be a very difficult weekend for our family, please pray for the strength and guidance we will need. Please pray for our children who have been through more than a child needs to go through in an entire life time. We thank you for your notes and calls and apologize for not returning most of them. Every moment Missy has to rest is greatly needed. We have a nurse coming to the house on Sunday to have blood work done for a Monday morning appointment. Thank you for your patients with me. Love to all of Missy and Ryan's awesome support team. Les, Missy, Heidi, Will and SuperRyan
Thursday, November 06, 2008
Still at Emory
We are missing the kids terribly. Missy had her first round of chemo tonight as her battle starts to regain her health. The original cancer has metathesized and has also created a secondary and more dangerous effect called DIC. She is unbelievably brave and determined to win no matter what is required. Her family, friends and faith have kept her in good spirits for the most part. We are very anxious to hopefully get home tomorrow to be with Heidi, Will and Ryan. I am hoping she will let go of them long enough for me to get a hug or two in! We wait daily for labs to help with daily decisions. We will have a nurse at the house on Sunday to take labs. There have been many ups and downs in a very short period of time. It is hard for her to talk without coughing and getting very nauseous. She just doesn't have the air capacity at this time. Pray, pray, pray, that's all we can ask. Love Les, Missy, Heidi, Will and SuperRyan, who, went back to school today for the first time in more than 6 weeks, good job Ryan :)
Wednesday, November 05, 2008
A New Record
You are not going to believe it but Ryan and I flew home today. NO treatment required ! We spent a short 20 hours in NY because Dr. Kramer said Ryan was her first patient to acquire the max. radiation/3f8 dosage after just one test round and one treatment. So that means we are finished traveling to NY for a while. We were two happy campers. The real benefit was we were able to come home early and be with Missy. She is still at Emory. We have a couple of markers to hit before she will be released. Please pray for the strength that Missy needs to get her home safely. Les, Missy, Heidi, Will and record setting SuperRyan
Back in NY
We arrived at Sloan last night with out a problem. Ryan an I were getting a little dinner at the airport and were going to get some snackers for the fight. I told Ryan "let's swing by the gate right quick and see whats going on", well, there was no one at the gate, all had boarded! oops! made our flight though.
The team here in NY gets a little perturbed when we show up at 7pm instead of 1pm, buts that's the way rock stars do it. I just can't see why they want us up here so early?
Missy had a rough night last night mainly due to the heavy drugs. Karen said she was saying some pretty funny things and cussed out a nurse. I don't think she will remember any of it. They only did the two biopsies yesterday, the port placement is happening right now. Once her loopyness wears off, she will be able to go home and rest, hopefully comfortably.
Missy needs your prayers more than ever right now. Les, Missy, Heidi, Will and SuperRyan
The team here in NY gets a little perturbed when we show up at 7pm instead of 1pm, buts that's the way rock stars do it. I just can't see why they want us up here so early?
Missy had a rough night last night mainly due to the heavy drugs. Karen said she was saying some pretty funny things and cussed out a nurse. I don't think she will remember any of it. They only did the two biopsies yesterday, the port placement is happening right now. Once her loopyness wears off, she will be able to go home and rest, hopefully comfortably.
Missy needs your prayers more than ever right now. Les, Missy, Heidi, Will and SuperRyan
Tuesday, November 04, 2008
Staying positive
Missy checked into Emory on Sunday. Her cough and head pain has not given her a break for weeks now. Today, she will be having a series of tests to hopefully give us a clear picture on a direction to get her back to feeling 100%. If the schedule holds up, she should be home tonight, but results not for a few days. Ryan and I head back to NY for the last time this year. He will get the final two rounds in January. He has an MIBG scan scheduled for next Thursday to see what's changed in his leg since his last scan. During the break from NY, he will likely have to under go more radiation and chemo.
I know I don't need to say how very worry some the next two weeks are for Missy and I, but we could sure use an extra pray and a positive thought or two, to make it though. We thank you for that, love always, Les, Missy, Heidi, Will and SuperRyan
I know I don't need to say how very worry some the next two weeks are for Missy and I, but we could sure use an extra pray and a positive thought or two, to make it though. We thank you for that, love always, Les, Missy, Heidi, Will and SuperRyan
Saturday, November 01, 2008
He's home and loving it!
You can relax. Ryan has done a great job with this injection. He threw up only twice and had no fever. Les and Ryan held a video conference while he was getting his antibodies. That was cool, he really liked that. We were able to go back to the Ronald McDonald House on Thursday and caught an
earlier flight home yesterday. He was really looking forward to Halloween ! He got straight into costume and hit the road with a vengeance. He is so resilient, he is unbelievable. I was pretty sick and hardly able to take care of him. No, really it was more like him taking care of me. The four days seemed like 14. I learned a valuable lesson that no matter how badly you don't want to be sick, sometimes you just can't help it. You'd think I had already learned that, right? I got some medicine today to help with my cough and my breathing, and I have a couple of appts. set up for next week to make sure I am on the mend. Ryan spent some time today at his Nanny and Grand-daddy's with his buddy, Matt. I call that the best of both worlds. He is spending tonight at Matt's and I'm sure have a great time. I'd like to say thanks to everyone who has helped me out in the last couple of days. I have some great friends and family, and I am very thankful for them. Ryan and Les head back to NY on Tuesday. He will have this next injection, and then he will get a break from going to NY. He'll do a couple rounds of low-dose chemo or accutane before heading back. Believe me, he will love the break. Thanks for your many prayers, Love, Les, Missy, Heidi, Will, and SuperRyan
earlier flight home yesterday. He was really looking forward to Halloween ! He got straight into costume and hit the road with a vengeance. He is so resilient, he is unbelievable. I was pretty sick and hardly able to take care of him. No, really it was more like him taking care of me. The four days seemed like 14. I learned a valuable lesson that no matter how badly you don't want to be sick, sometimes you just can't help it. You'd think I had already learned that, right? I got some medicine today to help with my cough and my breathing, and I have a couple of appts. set up for next week to make sure I am on the mend. Ryan spent some time today at his Nanny and Grand-daddy's with his buddy, Matt. I call that the best of both worlds. He is spending tonight at Matt's and I'm sure have a great time. I'd like to say thanks to everyone who has helped me out in the last couple of days. I have some great friends and family, and I am very thankful for them. Ryan and Les head back to NY on Tuesday. He will have this next injection, and then he will get a break from going to NY. He'll do a couple rounds of low-dose chemo or accutane before heading back. Believe me, he will love the break. Thanks for your many prayers, Love, Les, Missy, Heidi, Will, and SuperRyanTuesday, October 28, 2008
A Long Day
Night has finally come and things have finally slowed down. Our flight today was delayed three hours for bad weather in NY. It is soooo cold here, and was raining when we had to find our way to Sloan. He has finally eaten something (he complained the pound cake just wasn't like his Nanny's) and will be getting platelets soon. He will be getting the usual pre-meds this time to avoid those nasty hives. I will post again tomorrow after the injection. Please pray that he has a great sleep tonight (me, too) and the injection goes smoothly tomorrow with no pain or nausea, or fever, either. Thanks so much for checking in on us. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, October 26, 2008
Home again. ah!
So Sorry for the delay in posting. We made it home late on Friday-all 5 of us. Friday was such a long day. Ryan got to come back to the Ronald McDonald House on Thursday after the the PET scan. We rented a movie and ate popcorn. It was great! He ran a little bit of fever during the night, and Les and Will took him back Friday morning. He got an IV dose of antibiotic, another PET scan and they let him go home. I got about a 40 minute notice that the Super Shuttle was picking us up and Heidi and I hurried to clean everything up and get packed. We rode around on the shuttle for 2 hrs., then our 5:00 flight got pushed back to 6:15, and we might have gotten in the air by 7:30. My poor Dad was hanging out at a Waffle House near the airport to pick us up for what I'm sure felt like forever. It was definitely great to be home again. Heidi and Will both played soccer yesterday, and Heidi had a game to ref. I had looked forward to going, but Ryan and I stayed home. We both felt pretty rotten all day. Thank you, everyone who brought food and came to help. Tomorrow I have an appt. with my dr. at Emory. I am hoping to get some answers to this cough that just won't go away and some good medicine before Ryan and I head back to NY on Tuesday. He has felt much better today. Please pray for a smooth trip for us, and for all he will have to endure. We are hoping for no fever, nausea, or other bumps in the road. Thanks for taking this journey with us and for your never ending support. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, October 22, 2008
Latest
No fever but very nauseous. We were waiting in Nuclear med when Ryan started throwing up. I grabbed the closest trash can and saved a greater mess on the him, the wheel chair and the floor. We got him situated in the scanner and about a quarter of the way through the scan it happened again. He is very drugged up right now, so I reached the bucket into the scanner and caught it all. He never missed a beat and the Physicist said "we're doing good, let's not stop now". He finished his scan 20 min. later, then threw up one more time. He is back in bed now, resting but still very nauseous. If this is the worst...Thank you !
Injection complete
All has gone well today with the 3f8 injection. He got platelets again, but no reaction this time, thanks to pre-meds. An entire team came in and drew off some cerebro-spinal fluid, injected the antibodies, and flushed with his his own fluid. It might have taken 30 minutes start to finish. Ryan sat up in his bed eating Lay's potato chips the whole time. Then he finished off one of NY's great warm salty pretzels. It's been about an hour and a half, and no nausea or pain yet, but we don't want to jinx ourselves. We're still watching him closely and expecting anything can happen at any time. He will have a PET scan in about an hour then one 3 hours after that to see where the antibodies go and that they do disperse. He'll have another scan tomorrow around 11 and then maybe discharged back to the Ronald McDonald house. He is happy about that. We will be back again on Friday then fly out late afternoon. When Ryan's feeling good, we are all doing well! Les, Missy, Heidi, Will and SuperRyan
Monday, October 20, 2008
Inpatient bound tomorrow
Ryan checks into Sloan tomorrow to gear up for the 3f8 antibody test dose on Wednesday. We are hoping and praying that the pain will be tolerable and nausea kept to a minimum. The easier it goes this time will surely help with getting him back up here for the next round. Missy will be coming up with him next Tuesday through Friday.
Busy day !
We met with Ryan's NY buddy Jon, for lunch, then toured "ground zero". We ferried around the Statue of Liberty and finished the day with a theme dinner at the "Jekyll and Hyde" restaurant. Lots of fun!
Please keep Ryan in your thoughts and prayers the rest of the week as we move into the unknown for us. Les, Missy, Heidi, Will and SuperRyan.
Sunday, October 19, 2008
All Together, again.
The weather has turned colder up here over the last couple of days. It was perfect for lunch and ice-skating at Rockefeller Center. We walked down to Times Square just long enough to pick up Ryan a pretzel and then caught the subway back to the Ronald McDonald House. Ryan has loved having Will here to play games. Not sure yet what tomorrow holds. I know the kids want to see Ground Zero and the Statue of Liberty, and, don't forget, Central Park. Ryan has been all smiles today, and for that we are very thankful. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, October 18, 2008
A Couple of Quacks!
This was yesterday on our "Duck Tour" in Philadelphia. We decided we needed a change of pace-something relatively slower. The boat/truck, actually cruised around the Delaware river! It was a nice day with a relaxing double decker tour around the city also, we didn't get see too much up close though. Ryan is not into a lot of walking and time was short. We are off to meet Les' cousin, Christina, in Greenwich Village. We're going to walk around Soho, too. Heidi has a soccer game this morning. I wish I had booked their flight earlier in the day, but at least, they will have plenty of time to get their stuff together and get to the airport. We will be so glad to put our arms around them and see their smiles. Have an awesome day! Les, Missy, Heidi, Will, and SuperRyanThursday, October 16, 2008
We finally hit the town!
We made it down to Times Square last night. OMG, I am officially old! We braved the subway and walked around a bit, grabbed a bite to eat, and headed home. We had to be at Sloan this morning at 9:30 for a brain MRI (which was late), the last of the flow study scan (also late) and then ran upstairs real quick to get deaccessed. Ha! Ha! Joke's on us, I guess. We left around 5:00! Ryan was pretty mad about it all. We were supposed to meet his pilot buddy, Jon, for lunch, but had to cancel. We found out he had to get platelets before he could be registered for the study. The platelets only took about an hour, but he started breaking out in hives about the time the platelets were done. He got two IV meds to bring that around. Our nurse, Terri, was wonderful and patient with him. He was not a happy camper! I spent the next hour or so at the drug store around the corner from the Ronald McDonald house trying to get prescriptions filled for us. Dr. George, Dr. Rapkin, and Dr. O'Regan have all been so great (and Erika and Liz) helping us get prescriptions filled so our insurance would pay for them. I have a terrible cough still, but hopefully this new medicine will help even more. Ryan has to start taking the dreaded SSKI every day while on the study. He is so great about it, and doesn't complain a bit. It is basically iodine to protect his thyroid from the radiation. Yucch!!! He also has to start taking a medicine to help his thyroid function properly. It is in pill form, so that shouldn't be a big deal. key word here is "shouldn't". We are getting excited about Heidi and Will getting here on Saturday. We are thinking about going ice skating at Rockefeller Center on Sunday. Ryan doesn't have to be back at Sloan until Tuesday at 1:00 so we are going to pack in as much fun as we can. The picture is from last night. I don't know if you can see my mysterious black eye or not. It appeared after my massage at family camp on Saturday. Just something else in my back-pack! It only looks bad, it doesn't hurt a bit. Thanks for checking in on us and for your prayers and encouragement. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, October 15, 2008
Family Camp
We had a great time at Family Camp last weekend, as usual. We missed Heidi, as she had an important soccer game in the middle of the day on Saturday. Thank you, Camp Sunshine!
We're here!!
I had great plans to post with great pictures that "we made it!", but our pace just hasn't let me. And, just adding this one picture has taken forever. I will try and add more later. We took this one yesterday in Central Park. We got here safely on Monday and are settled in at the Ronald McDonald House. Tuesday at Sloan went pretty smoothly with a spine MRI (he has to lay completely still for an hour) and a CT. We met with the nurse practitioner who was really nice and didn't seem to mind a bit when Ryan wouldn't even peek from under his blanket. We managed to get a jogging stroller here at the R.M. House so he doesn't have to walk to the hospital, which is awesome! He looks pretty funny with his blanket draped over the entire thing. He is loving watching u-tube on Les' i-phone under his blanket. Today, they will access his Ommaya port and inject a radio-active tracer and then scan periodically to make sure it is dispersing the material like it should for the treatment. On Thursday, he has a brain MRI and a final nuclear scan then he'll be done until next Tuesday. We are making mental plans for when Heidi and Will get here on Saturday. He has a list of things he wants to show them, and I am dying to see the Statue of Libery. We'll only have a couple of days to take in as much as we can together. Ryan will have to be inpt. Tuesday night for the rest of our stay. We will update again when we have more information. Thank ya'll so much for your prayers for Ryan and our family. Your messages and your support give us much strength that we need. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, October 12, 2008
Not a good scan
Ryan's scan on last week has shown uptake in his right leg. This will mean that during our break from treatment in NY, Ryan will undergo more radiation and if possible, chemo here in Atlanta. I just can't imagine what goes through his little head with this never ending treatment...
We did have a great time as usual at Camp Sunshine this weekend. It is just soooo hectic it hard to think straight. Worrying that everything is done and up to date, that Heidi and Will are OK, that they are going to have a smooth trip to NY next weekend to meet us.
I have to thank all the friends of ours and Ryan's who have helped us out. Everything is so very much appreciated.
Well, we are finished packing and will be flying to NY in the morning. Thank you again, Les Missy, Heidi, Will and SuperRyan
We did have a great time as usual at Camp Sunshine this weekend. It is just soooo hectic it hard to think straight. Worrying that everything is done and up to date, that Heidi and Will are OK, that they are going to have a smooth trip to NY next weekend to meet us.
I have to thank all the friends of ours and Ryan's who have helped us out. Everything is so very much appreciated.
Well, we are finished packing and will be flying to NY in the morning. Thank you again, Les Missy, Heidi, Will and SuperRyan
Wednesday, October 08, 2008
What a day!!
Ryan stayed at school till 11:30 today, which is the longest in the last week and a half. He missed everyday last week. I had an appt. with my dr. at Emory, and thanks to my friend, Linda, he was able to camp out at her house during my appt. We made it to Scottish Rite at 3:30 for a 15 minute injection and left at 6:15. It was soooo long and cold sitting around in radiology. The highways were packed with cars so we stopped at I-Hop for some blueberry pancakes, and finally made it home at nearly 9:00. Needless to say, we are pooped! We are all excited that Daddy is coming home tomorrow. He is going to be home in time for Ryan's MIBG scan. Please pray for a dark scan. I will go in feeling better knowing his marrows are clear, but it is still always a very nervous event. We have Family Camp this weekend at Camp Sunshine and are looking forward to some great time together. Thanks for checking in on us and for your prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, October 07, 2008
Good News and very, very sad news.
The good news came in an email this morning from Erika. Ryan's marrows are clear. Hooray!! With all this sleeping, we have been really worried about him. We know this is typical, but it is still hard to see him feel bad. It is usually so comforting to be with him because he usually feels pretty good. We haven't been too comforted lately.
Shortly after that, I got an email from Les. He is in TX on business and got a call from his mom that our nephew, Jerry, had a heart attack and passed away in the early hours this morning. Please pray for his wife and his little 4 and 6 year old boys. Jerry was only 28 and in the midst of, what I'm sure were, the best days of his life. I wish that Les and I were able to go up and be with the family, but with Ryan's scan on Thursday and our trip to NY on Monday, it seems crazy to even consider it. Please pray for all the Morgan family and the McGinnis'. The next week is going to be so difficult. Love, Les, Missy, Heidi, Will, and SuperRyan
Shortly after that, I got an email from Les. He is in TX on business and got a call from his mom that our nephew, Jerry, had a heart attack and passed away in the early hours this morning. Please pray for his wife and his little 4 and 6 year old boys. Jerry was only 28 and in the midst of, what I'm sure were, the best days of his life. I wish that Les and I were able to go up and be with the family, but with Ryan's scan on Thursday and our trip to NY on Monday, it seems crazy to even consider it. Please pray for all the Morgan family and the McGinnis'. The next week is going to be so difficult. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, October 05, 2008
BOO!!
Did we scare you? We scared a lot of people Saturday night at the Night of Screams haunted house. You'll just have to imagine how scarey Will and Mom were! and, yes, they had make-up, too! Thank you, Rob, and all the other spooks! We had a great time, but sure were tired today. Speaking of being tired, Ryan has been sleeping a lot this past week, and we're told that could continue for another week. It is a common side effect from his radiation. We were told it could happen 4 to 6 weeks after radiation. It figures Ryan would stretch that out to 7! We've got a busy week ahead getting ready for NY. Between Ryan and mom, we've got 4 trips to Atlanta to see the doc. Thanks for checking in on us, and thanks for your many prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, October 03, 2008
Schedule Confirmed
Ryan will have his MIBG scan done in Atlanta next week. The following week we will head to NY to have the remaining tests completed. The week after that we will run a test dose of the 3f8 antibodies. Then, finally, treatment begins.
MRI Spine Scan Tue, 10/14 @ 8:00am
CSF Flow Inj Wed, 10/15 @ 10:30am
CSF Flow Scan Wed, 10/15 @ 11:00am
CSF Flow Scan Wed, 10/15 @ 2:00pm (@4 hr scan)
MRI Brain Scan Thu, 10/16 @ 9:00am
CSF Flow Scan Thu, 10/16 @ 11:00am (@24 hour scan)
CT cap Thu, 10/16 @ TBD
Inpatient at Memorial Sloan,
10/22-24 3F8 inj Test
Inpatient at Memorial Sloan,
10/29-31 3F8 inj #1
11/05-07 3F8 inj #2
11/12-14 3F8 inj #3
6 week break for treatment in Atlanta
Inpatient at Memorial Sloan,
3F8 inj #4
3F8 inj #5
This is going to be a really tough schedule on Ryan. When you have to look ahead like this, it just so hard to imagine doing it. With the good Lord and great Doctors with us, we will come out the other side of this course, then begin to plan the next one. Ryan is the most incredible fighter, brother, son, comedian and hunter! you will ever meet. We are so unbelievably grateful to have him in our lives. Wish us strength, wisdom and patience. Les, Missy, Heidi, Will and SuperRyan.
MRI Spine Scan Tue, 10/14 @ 8:00am
CSF Flow Inj Wed, 10/15 @ 10:30am
CSF Flow Scan Wed, 10/15 @ 11:00am
CSF Flow Scan Wed, 10/15 @ 2:00pm (@4 hr scan)
MRI Brain Scan Thu, 10/16 @ 9:00am
CSF Flow Scan Thu, 10/16 @ 11:00am (@24 hour scan)
CT cap Thu, 10/16 @ TBD
Inpatient at Memorial Sloan,
10/22-24 3F8 inj Test
Inpatient at Memorial Sloan,
10/29-31 3F8 inj #1
11/05-07 3F8 inj #2
11/12-14 3F8 inj #3
6 week break for treatment in Atlanta
Inpatient at Memorial Sloan,
3F8 inj #4
3F8 inj #5
This is going to be a really tough schedule on Ryan. When you have to look ahead like this, it just so hard to imagine doing it. With the good Lord and great Doctors with us, we will come out the other side of this course, then begin to plan the next one. Ryan is the most incredible fighter, brother, son, comedian and hunter! you will ever meet. We are so unbelievably grateful to have him in our lives. Wish us strength, wisdom and patience. Les, Missy, Heidi, Will and SuperRyan.
Wednesday, October 01, 2008
New Schedule (maybe)
We are trying to get Ryan's MIBG injection and scan done here in Atlanta, next week. We will try to accomplish all the other tests he needs, the week of the 13th, in New York. This will eliminate at least one trip. It is going to be hard enough to get him to go several times. Thank you for all your support. Les, Missy, Heidi, Will and SuperRyan.
Got any spare Delta tickets? :)
Finally have a schedule !
10/08-11 CSF flow study, MRI brain/spine, MIBG, outpatient at Memorial Sloan,
Inpatient at Memorial Sloan,
10/14-17 3F8 inj #1
10/21-24 3F8 inj #2
10/28-31 3F8 inj #3
6 week break for treatment in Atlanta
Inpatient at Memorial Sloan,
3F8 inj #4
3F8 inj #5
Finished by Christmas
10/08-11 CSF flow study, MRI brain/spine, MIBG, outpatient at Memorial Sloan,
Inpatient at Memorial Sloan,
10/14-17 3F8 inj #1
10/21-24 3F8 inj #2
10/28-31 3F8 inj #3
6 week break for treatment in Atlanta
Inpatient at Memorial Sloan,
3F8 inj #4
3F8 inj #5
Finished by Christmas
Tuesday, September 30, 2008
Quick fever update
Ryan has not yet been able to shake his fever, He is back at Scottish this morning for another iv antibiotic. He is just feeling pretty lousy.
We have not received any NY details yet so we are still on hold for the trip. We also had stopped by Ryan's dentist office and the wonderful staff there had a Play Station there waiting for him, he was beaming ! Thank you !
Thanks for checking on Ryan and hopefully he will get back to his mischievous self soon! Les, Missy, Heidi, Will and SuperRyan.
We have not received any NY details yet so we are still on hold for the trip. We also had stopped by Ryan's dentist office and the wonderful staff there had a Play Station there waiting for him, he was beaming ! Thank you !
Thanks for checking on Ryan and hopefully he will get back to his mischievous self soon! Les, Missy, Heidi, Will and SuperRyan.
Monday, September 29, 2008
Mud bath in Atlanta...$500.00, South Georgia, No Charge, Friends...PRICELESS
You know...kickin back in the jacuzzi tonight, smiling to myself while thinking about the great weekend Ryan and I had together with some new friends, this rang close to home for me...
"You might just be a redneck, if you truly care for your family and friends with all your heart"
That was the kind of weekend we were blessed to have received. Thank you to Jeff, Jay, Glen, John, Smith and Jay from Ryan and myself.
Les
"You might just be a redneck, if you truly care for your family and friends with all your heart"
That was the kind of weekend we were blessed to have received. Thank you to Jeff, Jay, Glen, John, Smith and Jay from Ryan and myself.
Les
Thank you all, Prayers Answered!
Thanks to everyone for praying for Ryan. His counts had made a nice jump. Platelets were 56k, Hemo.- 8.8, and ANC- 990. We thought we were going to avoid the aspirates, but after they had emailed the results to Dr. Kramer in NY, she emailed back asking them to proceed with the aspirates. Bummer! Les said Ryan seemed pretty loopy coming out of the anesthesia. We will be waiting to hear how soon we can go to NY. thanks again! Love, Les, Missy, Heidi, Will, and SuperRyan
Pretty Girls All Around
Les and Ryan are on their way down to Scottish Rite already. He had a fever last night, and we broke the rules by not taking him straight to the ER. He was just so tired, and we know how long that wait in the ER can be. We gave him Tylenol and let him sleep. We know with his low white count, it could be anything, but we felt pretty safe it wasn't his port. It hasn't been accessed in about a month. Please keep up your prayers for a significant increase in his blood counts, particularly his platelets. I remember from transplant that fever eats platelets so we don't want anymore fever! We also don't want to have to do the aspirates/biopsies. It is a worrisome and painful procedure.
We had a few calls over the weekend of possible Dixie sitings, but nothing panned out. We haven't given up hope yet.
Les will be adding an update of their weekend hunting with some pictures. Just no time yesterday. You can see how pretty Heidi and her friends looked at Homecoming. They seemed to have a great time and even brought the party back to our house for a few hours.
Thanks for checking in with us and we will update when we have some news. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, September 26, 2008
Oh-Rion (think about the stars)
Ryan, Dad, and our friend, Smith, got off on their hunting trip today. Ryan was pretty excited when I talked to him just now. He shot two deer tonight! Yikes! I can't believe he actually did it, but the photo proves it, I guess! I'm just glad he is having fun. We got an email from Dr. Kramer who is hoping we get to NY pretty soon. Please say a prayer that Ryan's platelets go up enough to make the trip.
Heidi, Will, and I went to the AHS Homecoming game. It was a solid win and a fun night with friends. For half a second, Heidi thought Dixie was in the garage when we raised the door as we pulled in. :( She is reffing two soccer games tomorrow and Will has a game at noon. Then, it's nails, hair, and more fun girly-stuff getting ready for the Homecoming dance. Watch for pictures!!
I went to a doc-in-a-box today. I was really worried I had pneumonia. My cough has been so bad lately I can't catch my breath. He gave me a script for an antibiotic, cough syrup, and an inhaler. I've never used one, but it can't be too complicated, can it?
Please continue to pray for her family. I know they miss her more than any of us can imagine.
I'd also like to ask for prayers for one of our neighbors. Mrs. Carey had to have surgery to remove pressure on her spine, and may not be able to walk again. Her family has been through so much, and they are all such strong people. They have always been so kind to us. I will always remember that we were with her when we first heard about the Twin Towers being hit on 9/11. She was giving Ryan cowboy boots!
We've had lots of requests from the nicest people offering to help with the hunt for Dixie and just wanting to do something for Ryan. If you'd like to send something you can send it to: 4850 Golden Parkway, Suite BPMB 425Buford, GA 30518. Les and I aren't very good at asking for help or even accepting it, but know how touched we are by everyone's sincere desire to help us. And don't ask my parents about that whole asking for help thing. :) They do so much for us to relieve some of the burdens of just day to day stuff, and we are so very grateful!!
The alarm system was installed yesterday, and we are still getting used to it. I am so afraid of setting it off! Thanks for checking in on us and for your prayers. We love ya'll! Les, Missy, Heidi, Will, and SuperRyan
Thursday, September 25, 2008
$1100.00!!!
We have gotten several calls about various pups, but no Dixie yet. We received a call last night right after Ryan was on Channel 2 from a total stranger. She offered to up the reward to $700!! A friend of ours here from SC offered up $200, and then another offered $100 to make it an even thousand!! Shortly after all that excitement, Jenifer from WSB who interviewed Ryan for the Aflac Care-a-thon, called and offered another $100. So now our reward stands at $1100. Maybe that will get some creep's attention, or their grandmother, or their neighbor, or just somebody who has seen Dixie. We are so appreciative of the outpouring of concern and love for Ryan and our family. We are working on making our children aware of all the goodness we are witnessing in the midst of the bad.
Ryan made it through three days of the Iowa Test of Basic Skills at school. He left today right after he finished the testing. He is just dragging with his hemoglobin so low. We got confirmation today of the test on Monday. It usually takes several days to get results. Please start praying that his counts will make a good jump and we won't need the aspirates, but that if we do, the results will show no cancer in his marrow and bone. We will keep you updated on Ryan and his puppy. Thank ya'll from the bottom of our hearts! Love, Les, Missy, Heidi, Will, and SuperRyan
Ryan made it through three days of the Iowa Test of Basic Skills at school. He left today right after he finished the testing. He is just dragging with his hemoglobin so low. We got confirmation today of the test on Monday. It usually takes several days to get results. Please start praying that his counts will make a good jump and we won't need the aspirates, but that if we do, the results will show no cancer in his marrow and bone. We will keep you updated on Ryan and his puppy. Thank ya'll from the bottom of our hearts! Love, Les, Missy, Heidi, Will, and SuperRyan
Sad state :(
Along with the many wonderful calls and emails that we have received today, there has been a tremendous amount of hate mail to Ryan's site. We have had to shut down the message board due to all the vile comments and delete the posted emails. Please know that we plan to keep you in our thoughts and hope, that in time, you will grow to learn compassion for the defenceless children you so enjoy attacking. You will become a stronger individual and less of a coward.
Sincerely, Les, Missy, Heidi, Will and SuperRyan
Sincerely, Les, Missy, Heidi, Will and SuperRyan
Super Ryan's a Super Star
Ryan is starting to get this interview thing down pat. He did great today when interviewed by Jennifer Leslie of 11Alive News. She and photojournalist, Charles Olmstead, came out to school this morning to interview Ryan and I, and it will be on the Early Show tomorrow between 5 and 7, then a few more times during the day. Our hope is that someone will see it and return Dixie and maybe even my computer and the sentimental items from my jewelry box. It may seem like a long-shot, but I know it can't hurt. At the very least, I will know I have done everything possible to get her back. Thank you, Jill Becker for making this happen for Ryan.We got his counts back today. His platelets went from 30 to 32, hemoglobin went up to 7.9 (hooray!), but his white count is hovering just over 1.0. His ANC did drop a bit. We are perplexed, and worried. We went ahead and scheduled bone marrow aspirates for next Monday. They will check his counts first, and if there is a significant jump, we'll cancel the aspirates. Please start praying now that there will be a decent rise in his blood counts.I haven't had any time to start replacing any of what was taken at the house. Les and Ryan are going hunting this weekend with Smith, so maybe I can get somethings replaced. First on my list is a camera! Homecoming is this weekend, and Heidi and all her friends are getting ready at our house. I definitely want pictures of that!Thanks for checking in on us. Let us know if you see Ryan on the news. We'll let you know if something happens on the Dixie front! Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, September 18, 2008
Check out Woman's World
I forgot to mention that Ryan is in this week's edition of Woman's World magazine. There are a couple of good pictures of him- None of the ones the photographer took of him at the house though. The article is actually about Ryan's friend, Jena and her Prince and Princess of Hope pageants. It's a great article.
I went up to the newspaper office today and put in an ad offering a reward for Dixie. One of the moms at soccer said someone took her dog and then brought it back to get the reward! Maybe it will work for us.
Ryan had a good day at school today and then went and worked the concession stand at the girls softball game at Apalachee High. He has such a good time doing that. I think they pay him in candy and soft drinks! Thanks again, Barre! I am so glad tomorrow is Friday. It has been a long week and we are all tired. I can't wait to sleep in on Saturday! Have a great weekend. Love, Les, Missy, Heidi, Will, and SuperRyan
I went up to the newspaper office today and put in an ad offering a reward for Dixie. One of the moms at soccer said someone took her dog and then brought it back to get the reward! Maybe it will work for us.
Ryan had a good day at school today and then went and worked the concession stand at the girls softball game at Apalachee High. He has such a good time doing that. I think they pay him in candy and soft drinks! Thanks again, Barre! I am so glad tomorrow is Friday. It has been a long week and we are all tired. I can't wait to sleep in on Saturday! Have a great weekend. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, September 17, 2008
two forward, one back
Oops, correction from Missy, Ryan's platelets actually dropped down to 30k this week from 35k. His ANC did take a nice jump up though. Cross your fingers and say a prayer that this is a sign his counts are on the move straight up. Maybe this is the Big Jump week!
Barrow County News was nice enough to write an article about Ryan and Dixie asking for her return. That would sure be nice if it could happen. Keep spreading the word about her and maybe...just maybe...
Thank you for your help, Les, Missy, Heidi, Will and SuperRyan
Barrow County News was nice enough to write an article about Ryan and Dixie asking for her return. That would sure be nice if it could happen. Keep spreading the word about her and maybe...just maybe...
Thank you for your help, Les, Missy, Heidi, Will and SuperRyan
Sunday, September 14, 2008
Nothing yet!
Sorry for the delay in updates. It has just been g0-g0-g0. We have put up signs, alerted the local vets and the pound, and yesterday morning my friend, Barre' and I hit a couple of close-by flea markets hoping to spot someone trying to sell Dixie. Nothing so far. (Thanks, Barre'!) The Barrow County News put an article in today's paper and we're hoping to shame someone into returning her. We're going to put in an ad offering a reward and hope someone will bring her home. We have the serial number on the computer so if it shows up at a pawn shop we should be able to get it back. It has all our pictures on it. :( They took my camera, Heidi's camera, and our video camera. They took my jewelry box and Heidi's jewelry box. I didn't have a lot of great jewelry, but there were things in there the kids had bought for me when they were so little, and a pin Ryan had made in Pre-K. I'd just like to get that stuff back. They took the kids' Wii game and a bunch of video games, too. It just makes me so mad and sick to think about it. We have to start compiling a complete list, and I have been putting that off.
Ryan is feeling so-so. He spent yesterday and last night playing with his buddy, Matt. We will take him tomorrow afternoon to get labs done again to see where his platelets are. He finishes the two weeks of accutane Wednesday morning. It usually takes about a week for his skin to recover. He is itching pretty bad, and we are trying to keep lotion on him, but he is like his daddy. They both hate the feel of that on their skin.
Heidi and Will both had soccer games yesterday. I'm going to try and replace my camera today, so maybe next weekend I can get some pictures. Actually, next Saturday is the Quiet Heroes Luncheon that benefits CURE. This is a day that I look forward to. I get to visit with all my cancer-mommy friends, and they are the strongest women you will ever meet. If you visit the website, there are many ways to make a donation including buying a raffle ticket for a chance to win great prizes. Did somebody say 46" high-def plasma TV??
Les couldn't have had better weather for his golf game with CURE on Monday. His team finished in the middle of the pack, but the big winner was CURE. They expected a grand total of near $200,000!! They are funding research to find a cure for NB, and we are so thankful for all they do.
Thank you for your prayers for Ryan and for us this past week. Please keep praying for him, and please say a prayer for all the families hit by Ike yesterday. There are kids and their families braving it out in TX hospitals getting their chemo. Hans was fortunate enough to get in and out and escape the worst of the storm. We are off to our scary party later and that should be a lot of fun! Love, Les, Missy,Heidi, Will, and SuperRyan
Ryan is feeling so-so. He spent yesterday and last night playing with his buddy, Matt. We will take him tomorrow afternoon to get labs done again to see where his platelets are. He finishes the two weeks of accutane Wednesday morning. It usually takes about a week for his skin to recover. He is itching pretty bad, and we are trying to keep lotion on him, but he is like his daddy. They both hate the feel of that on their skin.
Heidi and Will both had soccer games yesterday. I'm going to try and replace my camera today, so maybe next weekend I can get some pictures. Actually, next Saturday is the Quiet Heroes Luncheon that benefits CURE. This is a day that I look forward to. I get to visit with all my cancer-mommy friends, and they are the strongest women you will ever meet. If you visit the website, there are many ways to make a donation including buying a raffle ticket for a chance to win great prizes. Did somebody say 46" high-def plasma TV??
Les couldn't have had better weather for his golf game with CURE on Monday. His team finished in the middle of the pack, but the big winner was CURE. They expected a grand total of near $200,000!! They are funding research to find a cure for NB, and we are so thankful for all they do.
Thank you for your prayers for Ryan and for us this past week. Please keep praying for him, and please say a prayer for all the families hit by Ike yesterday. There are kids and their families braving it out in TX hospitals getting their chemo. Hans was fortunate enough to get in and out and escape the worst of the storm. We are off to our scary party later and that should be a lot of fun! Love, Les, Missy,Heidi, Will, and SuperRyan
Wednesday, September 10, 2008
That's a real Bitch !
Missy and Ryan got home from school today to discover we had been robbed. I have to say that it's the least of our worries, but you know how you just keep putting off burning your pictures to DVD's, well, they were all on her laptop :( . If there is one thing we would like back, that's it.
We have a security company coming in on Tuesday to lock down the house. It's a shame that it has to be done but Ryan is pretty upset. Maybe it will help a little. Les, Missy, Heidi, Will and SuperRyan
PS; They stole Ryan's puppy Dixie out of her crate :(
We have a security company coming in on Tuesday to lock down the house. It's a shame that it has to be done but Ryan is pretty upset. Maybe it will help a little. Les, Missy, Heidi, Will and SuperRyan
PS; They stole Ryan's puppy Dixie out of her crate :(
Tuesday, September 09, 2008
Inching Up
We got an email this afternoon that Ryan's platelets have gone from 20k to 35k. That is an awesome jump, but I can't understand why his white count and his hemoglobin have gone down again. The plan is to check them again next week. If he feels bad, we can go get him some blood, but right now he doesn't want to.
Our friend, Rob, of Night of Screams called today and invited us to an open-house/start of season party on Sunday. We can't wait to see their newest scare. Ryan is ready to scare people! Thanks for checking in and thanks for your prayers and kind messages. We love yall! Les, Missy, Heidi, Will, and SuperRyan
Our friend, Rob, of Night of Screams called today and invited us to an open-house/start of season party on Sunday. We can't wait to see their newest scare. Ryan is ready to scare people! Thanks for checking in and thanks for your prayers and kind messages. We love yall! Les, Missy, Heidi, Will, and SuperRyan
Monday, September 08, 2008
OMG !!!
Ryan's HVA (which is a prime Neuroblastoma detector for him) is in the NORMAL range. Whew! (for now) Thank YOU, Les, Missy, Heidi ,Will and SuperRyan
Sunday, September 07, 2008
Say it with us, "Go up, counts"
We made Canadian blueberry/raspberry pancakes this morning. I just wish he had eaten them. His appetite hasn't been great lately. He has had a little cold. It seems to be going through the family. I'm sure the Accutane isn't helping. I hope we didn't let him stay outside in the sun too much today. He was complaining at dinner that his scalp hurt. I put some aloe on it twice before bed so maybe it will be better tomorrow. Speaking of tomorrow, I will be taking him to Coach Gary's clinic after school for a check of his counts. We aren't expecting much change. He lost a tooth today and one a couple of days ago. The bleeding wasn't too, too bad, but I expect his platelet count is still pretty low. And, tomorrow Les is playing in a golf tournament to benefit CURE at the Country Club of the South. It should be a beautiful day and I'm sure he'll have a great time. I hope they raise TONS of money!!
Doesn't he look like he's having a blast? He was laughing at Will. We had a great time in the pool this afternoon. Please say prayers for Ryan. Please pray that 1) his counts will be up 2) we are able to stay on this path to get the antibodies in NY and 3) he tolerates the Accutane. His lips are already drying out, and he has been a little irritable. Maybe that is just the cold. Thanks for checking in on us and thanks for your prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Doesn't he look like he's having a blast? He was laughing at Will. We had a great time in the pool this afternoon. Please say prayers for Ryan. Please pray that 1) his counts will be up 2) we are able to stay on this path to get the antibodies in NY and 3) he tolerates the Accutane. His lips are already drying out, and he has been a little irritable. Maybe that is just the cold. Thanks for checking in on us and thanks for your prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Just a few pics.
This is one of Ryan's favorites. A pudding race with no spoons! As you can see, Will wasn't going to let him win this one.
He helped me paint some chairs for my speech room at school. They turned out really great!
We celebrated Les' birthday August 31. I'll try and get a good picture of us all enjoying his present! Happy Birthday, Daddy!!
He helped me paint some chairs for my speech room at school. They turned out really great!
We celebrated Les' birthday August 31. I'll try and get a good picture of us all enjoying his present! Happy Birthday, Daddy!!Wednesday, September 03, 2008
Hmmm...
Ryan's counts were not better yesterday at the clinic. Les had nightmares trying to fill the script for Accutane. He has to drive back down to the clinic today to get a new handwritten prescription. Please pray specifically this week for Ryan's counts to go up. If they don't show an upward turn, they will do bone marrow aspirates to see if anything else is going on. New York just keeps getting further away. Praying hard they make a jump, Les, Missy, Heidi, Will and SuperRyan.
Monday, September 01, 2008
Asking today for prayers for Max's family. He passed away suddenly last night.
Saturday, August 30, 2008
Long overdue THANKS!!!
Thanks, Karen for the pictures below from Camp. Ryan is going back to the clinic on Tuesday to have his port flushed and for another set of blood counts. The plan right now is to start accutane, fondly referred to by us and a few others as craputane. When his platelets reach the magic number, we will head to Sloan.
I have a very long overdue huge thank you to the teachers and staff at Bethlehem School, and to Matt's mom and dad. Over $700 was raised at school in a single day back in the spring. Ryan's best buddy, Matt's mom and dad matched it. I sent it all in to CURE and filled out an application at Walmart to have them match the donation. I have waited and waited, and quite frankly, I'm over it. Who knows? Maybe they just send the donation directly to CURE, but I'm done. And so- thank you to everyone at school and to Scott and Christy for your generosity. Thank ya'll for caring so much for Ryan and for wanting to help find a cure.
Ryan is feeling good today. Thanks for checking in and for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
I have a very long overdue huge thank you to the teachers and staff at Bethlehem School, and to Matt's mom and dad. Over $700 was raised at school in a single day back in the spring. Ryan's best buddy, Matt's mom and dad matched it. I sent it all in to CURE and filled out an application at Walmart to have them match the donation. I have waited and waited, and quite frankly, I'm over it. Who knows? Maybe they just send the donation directly to CURE, but I'm done. And so- thank you to everyone at school and to Scott and Christy for your generosity. Thank ya'll for caring so much for Ryan and for wanting to help find a cure.
Ryan is feeling good today. Thanks for checking in and for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, August 26, 2008
What...??
Yeah...I did it !
Friday, August 22, 2008
Not enough bounce in his counts
It has been a really busy week. Everyone is back to school and getting used to bedtimes and homework. I can't believe our baby is in his final year of elementary school. It's gonna feel strange (and old) not to have a kid at Bethlehem. Ryan had counts done at Coach Gary's clinic last Friday, and again today. His platelets are not high enough to start chemo. We are going to have them checked again on Tuesday at the clinic and he will see Dr. George. We may skip this round and go on to New York, but we'll have to see what happens on Tuesday. He has made it ok at school so far. He was a little sick today and actually fell asleep in my room. I guess that's what happens when your hemoglobin is 8. something.
Will is off to Sibling Camp. I know he is having fun. Thanks, Camp Sunshine! Ryan is out with his BFF, Melinda. He is definitely having fun! Thank you, Melinda! We love you!
Some of you may heave heard Ryan on WSB today or yesterday. They played our interview on the radio. The WSB Care-athon raised over a million dollars for the Aflac Unit at CHOA. There were some great stories, and I haven't heard ours yet, but we will be receiving a copy soon. Thank you, thank you, thank you to everyone who made a donation.
Please say a prayer for Max and his family. They are having a tough go of it right now, and could use your prayers that the change in chemo drugs will beat back Max's cancer.
Also please pray for Luke's mom, Carrie, as she is struggling without her little Luke.
Thanks for checking in on us and please keep Ryan in your prayers. Love, Les, Missy , Heidi, Will, and SuperRyan
Saturday, August 16, 2008
Amazing boy
This morning Ryan lost 90% of his hair, the last 10 we hit with the razor. He took the new look with a grain of salt and went on with his day. It seems harder for us to accept! His ability to cope with treatments and side effects, for so long, is just unbelievable. We are so lucky to have him remind us everyday, whats important and true strength is not just lifting weights. Three cheers for Ryan !! We love you.
Monday, August 11, 2008
Ryan has three more days of radiation left, 3 too many as far as I'm concerned. This evening after his shower he was sitting in my lap. He slowly pulled his fingers through his hair and showed me several strands. "Oh no" he said. We are hoping that he won't loose all of it. He is not aware of the new surgical scars on his head and we were really hoping to avoid that stress or any others for him all together. School starts on Friday and we want him to be happy and excited about going. There is never a good time for any side effect. I just HATE all the treatment that saves his life :( Our hearts are so heavy watching the tremendous load he carries.
He did take time out of his busy schedule today to hand out gifts of appreciation to large contributors of "The Lighthouse" at a golf benefit at the Saint Ives Country Club with founder and a good friend of his, Melinda. Keep praying for his strength to endure.
Les, Missy, Heidi, Will and SuperRyan
He did take time out of his busy schedule today to hand out gifts of appreciation to large contributors of "The Lighthouse" at a golf benefit at the Saint Ives Country Club with founder and a good friend of his, Melinda. Keep praying for his strength to endure.
Les, Missy, Heidi, Will and SuperRyan
Tuesday, August 05, 2008
Just About Half-Way Done with Radiation
Tomorrow will be Day 6 of radiation. Ryan will be half-way finished. He had fun on Monday's visit. My friend, Karen, and her son Jackson went with us. Ryan had fun showing Jackson around the Winship. They brought us sausage biscuits from the vending machines. Yummy!! I tried telling him that meat and vending machines are not a good mix. He threw up before we got home, but felt better after he got sick. We have been giving him Zofran before his treatment since then.
No real news from my doc. She thought I looked great and was happy to finally get to meet Ryan. I go back to see her in 3 months.
We had to be at Scottish Rite this morning at 7:30 for an 8:00 CT to check the ommaya port and make sure it works properly. Everything went smoothly and it seems to be working like it is supposed to. We are hoping that by doing the test here a) if there were a problem, Dr. Reisner could take care of it, and b) that we won't have to do it in NY and might make our stay in NY a day or two shorter.
Dixie got a good check-up at the vet yesterday. She weighed 4 pounds! She is such a cutie and we are all loving her lots. Thanks for checking in on Ryan. Please keep him in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
No real news from my doc. She thought I looked great and was happy to finally get to meet Ryan. I go back to see her in 3 months.
We had to be at Scottish Rite this morning at 7:30 for an 8:00 CT to check the ommaya port and make sure it works properly. Everything went smoothly and it seems to be working like it is supposed to. We are hoping that by doing the test here a) if there were a problem, Dr. Reisner could take care of it, and b) that we won't have to do it in NY and might make our stay in NY a day or two shorter.
Dixie got a good check-up at the vet yesterday. She weighed 4 pounds! She is such a cutie and we are all loving her lots. Thanks for checking in on Ryan. Please keep him in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, August 03, 2008
Surprise !
SpyGear found out, somehow,just how much Ryan loves their stuff. Kim Bratcher from SpyGear in California, contacted us and was so unbelievably nice to send out some of their hottest items. Ryan was ear to ear hooking it up. Last night he had the video car in the den, watching TV after he went to bed. (gonna have to keep an eye on that thing!)
We hung out at the pool most of the weekend. Just can't image he had brain surgery such a short time ago.
Will was keeping us entertained with his tricks off the "slide". They hardly ever just slide down it anymore.
This week holds daily radiation, no chemo. It should be very smooth so long as the traffic co-operates. It generally takes 1 1/2 hours to get down to Emory.
We hope your weekend was as fun as ours! Lots of love to all our friends out there, Les, Missy, Heidi, Will and SuperRyan.
Friday, August 01, 2008
Chemo's done for this round
I did it! I de-accessed him without any trouble. I was WAY more anxious about it than him. So chemo is over for this week. He had a little nausea each day, but it seemed short lasting. Dr. Reisner gave him the go ahead to swim so I am certain he will be in the pool later today. We didn't have radiation today. They are updating their software. He hasn't had any more headaches, so that is great! Hopefully, he won't have anymore. He has been asking if he can do the things he hasn't been able to since April-like jumping on the trampoline, jumping on his pogo-stick, and heading a soccer ball. We gave him the go ahead on everything except the soccer ball!
He has an interview today with someone from WSB Radio for the upcoming Care-A-Thon that raises tons of money for Aflac at CHOA, and then we are hoping to pick up some back to school stuff.
I go back to see my oncologist Monday just before Ryan's radiation. Luckily, they are in the same building, so that helps. I have one week of summer vacation left before I have to go back to work. The kids start on the 15th. I dread it SO much!!! Back to homework and bedtimes. Yucch! Yucch! Yucch!
Thanks for checking in on us and for your prayers for Ryan. Please continue to pray for him to feel good and for his cancer to never come back. Please also pray for all the kids on and off treatment and for a cure for all cancer. Love, Les, Missy, Heidi, Will, and SuperRyan
He has an interview today with someone from WSB Radio for the upcoming Care-A-Thon that raises tons of money for Aflac at CHOA, and then we are hoping to pick up some back to school stuff.
I go back to see my oncologist Monday just before Ryan's radiation. Luckily, they are in the same building, so that helps. I have one week of summer vacation left before I have to go back to work. The kids start on the 15th. I dread it SO much!!! Back to homework and bedtimes. Yucch! Yucch! Yucch!
Thanks for checking in on us and for your prayers for Ryan. Please continue to pray for him to feel good and for his cancer to never come back. Please also pray for all the kids on and off treatment and for a cure for all cancer. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, July 29, 2008
Funs over :(
Chemo started on Monday and radiation began today. The treatment today lasted longer than it will take on next 11. Ryan had a pretty good head-ache this evening. We have been worrying about potential side effects and are praying that this is as bad as it gets.
We meet with Dr. Riesner tomorrow after radiation. He is going to test Ryan's ommaya port to make sure it is functioning correctly for NY. I am not sure how we're going to react to the test, let alone Ryan. It makes my stomach queasy thinking about it. He is hoping to get the go ahead to swim, after his port is de-accessed on Friday, of course. The Tylenol has kicked in and he is playing with the spy-gear room alarms he bought today with some of his birthday money. Thanks so much for checking in on us and for your many prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
We meet with Dr. Riesner tomorrow after radiation. He is going to test Ryan's ommaya port to make sure it is functioning correctly for NY. I am not sure how we're going to react to the test, let alone Ryan. It makes my stomach queasy thinking about it. He is hoping to get the go ahead to swim, after his port is de-accessed on Friday, of course. The Tylenol has kicked in and he is playing with the spy-gear room alarms he bought today with some of his birthday money. Thanks so much for checking in on us and for your many prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, July 27, 2008
Happy 10th Birthday, Ryan!
This was the scene at our house last Thursday night. A very scary scene! Ryan wanted to do a haunted trail at our house like we used to do for Halloween, and with the help of Rob Langston we were able to make that happen. Rob has a spook house in Athens across from Ga. Square Mall. He brought out all kinds of goblins, lights, masks, and even some of his friends, and his dad to make it all terrific for Ryan. They even made him an official member of their staff. Ryan is hoping to go this Halloween and volunteer at the spook house and scare people. I think that is his favorite part. Thank you to so many of our friends who were able to come out. We had a great time and we thank you for making it such a memorable night.
Silver, Bronze and ORANGE!
Today was a big surprise for Ryan at Hooter's. Thank you Kasey, Tonya and Larry
for making it such a great time for him. Don't you love the shirts? There were many magazines to go around for all Ryan's friends (and their dads). Calendars, t-shirts, shoes, and a football autographed just for Ryan by Fran Tarkenton all packed into a "SuperRyan" monogramed suitcase! He could not stop smiling the whole time we were there. Also a very special visit from Hooters International winner, Brea Ashley. Thanks, also, for our friends that were able to join us. Ya'll are so awesome and we love you!!
for making it such a great time for him. Don't you love the shirts? There were many magazines to go around for all Ryan's friends (and their dads). Calendars, t-shirts, shoes, and a football autographed just for Ryan by Fran Tarkenton all packed into a "SuperRyan" monogramed suitcase! He could not stop smiling the whole time we were there. Also a very special visit from Hooters International winner, Brea Ashley. Thanks, also, for our friends that were able to join us. Ya'll are so awesome and we love you!!
All together we brought home 5 medals- and one very cute puppy-from Tifton. I won't go into details about the meet. Just know it was long, very hot, and there were many gnats! We did pick up little Dixie, an 8 week old mini-Dachshund, and Ryan absolutely loves her (as do the rest of us!)
Wednesday, July 23, 2008
Mask up !
The hard plastic is dropped into boiling water and turns very soft in a couple of minutes. It is then pressed and formed to Ryan's head and hardens very quickly. It locks to the table to keep his head immobile during radiation. He can hardly wait to play hockey in it later !!Yesterday's appts. went well
Here is a picture of our little friend, Adalynn. She is just adorable. Her mom is Ryan's 3rd grade teacher. They are getting ready to move to PA, and we are going to miss them terribly. There is also a picture from yesterday of Ryan and our wonderful Dr. George. You might have seen his picture in Sunday's AJC. There was a very moving article about Tyler Copely. Tyler dropped the puck with Ryan last year at one of the Thrasher's games. Les took some pictures of Ryan with his mask, but I can't figure out how to post them. We'll get one up later. Things went well at Emory. We were initially thrown a curve with more radiation treatments than we had planned and the possibility of getting them twice a day (which would mean staying in Atlanta all day for a couple of weeks), but after Dr. Nadia consulted with the radiation oncologist in NY, we got it all settled to 12 treatments starting next Monday. They won't do a boost to the tumor site since he already had the gamma knife, but they will do radiation to his spine. Of course, we don't want to do anymore than we have to because of the potential side effects, but we want to be as aggressive as we can. It is a hard balance to achieve. We did a little shopping inbetween appts and picked up an American Idol video game.
We had a good visit to the clinic. Ryan's hgb. and white blood counts were really good. His platelets are still low at 66k, but high enough for chemo next week. We will do another round of irinotecan and temodar with the radiation. Please say prayers that he won't be sick. He has to be off chemo three weeks before we can start the antibodies in NY, so if everything goes as planned we could be back there the third week in August.
We are getting ready for his birthday weekend. We'll post pictures of that and hopefully of Heidi and Will picking up some medals at the state meet.
Thanks for keeping us in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
We had a good visit to the clinic. Ryan's hgb. and white blood counts were really good. His platelets are still low at 66k, but high enough for chemo next week. We will do another round of irinotecan and temodar with the radiation. Please say prayers that he won't be sick. He has to be off chemo three weeks before we can start the antibodies in NY, so if everything goes as planned we could be back there the third week in August.
We are getting ready for his birthday weekend. We'll post pictures of that and hopefully of Heidi and Will picking up some medals at the state meet.
Thanks for keeping us in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, July 20, 2008
Keep your eyes and ears open
Tonight on 60 minutes there is a story on a little girl, Olivia, who is fighting NB. It should be very interesting.
The Conquer Childhood Cancer Act has now passed in the House and in the Senate, and is headed to the Oval Office for Bush's signature. I hope they find the $$ to finance it.
Ryan is still doing great. We have appts. on Tuesday with Dr. George and at the Winship to make his mask. He stayed with Matt yesterday instead of going to the swim meet. It was such a long day. We had to be there at 12:15, and Will swam his first event around 4:00. He swam an all-star time in long free and finished first in breast stroke. He was pretty happy about that and didn't even get mad when he got disqualified on his flip turn in the backstroke. His birthday party is later today. A photographer is coming around 4 today to take pictures of us for Woman's World magazine. Watch for the Sept. edition to see if any of our pics make it. They are doing a story on Ryan's friend, Jena.
One of our friends from family camp earned his angel wings this past week. Dustin Cobb was an amazing little boy who fought hard for a very long time. We were very saddened to hear about his passing. He doesn't live too far from us and was getting a new treatment in VT that seems to hold a lot of promise. His family could use your prayers and some caring words.
Thanks for checking in on us and for your many prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
The Conquer Childhood Cancer Act has now passed in the House and in the Senate, and is headed to the Oval Office for Bush's signature. I hope they find the $$ to finance it.
Ryan is still doing great. We have appts. on Tuesday with Dr. George and at the Winship to make his mask. He stayed with Matt yesterday instead of going to the swim meet. It was such a long day. We had to be there at 12:15, and Will swam his first event around 4:00. He swam an all-star time in long free and finished first in breast stroke. He was pretty happy about that and didn't even get mad when he got disqualified on his flip turn in the backstroke. His birthday party is later today. A photographer is coming around 4 today to take pictures of us for Woman's World magazine. Watch for the Sept. edition to see if any of our pics make it. They are doing a story on Ryan's friend, Jena.
One of our friends from family camp earned his angel wings this past week. Dustin Cobb was an amazing little boy who fought hard for a very long time. We were very saddened to hear about his passing. He doesn't live too far from us and was getting a new treatment in VT that seems to hold a lot of promise. His family could use your prayers and some caring words.
Thanks for checking in on us and for your many prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, July 17, 2008
Birthday weeks coming up!
Ryan has been feeling great. He hasn't really slowed down. We are still shampooing twice daily and putting the antibiotic cream on his incision sites. It looks good to me, but I am no doctor. We got an email from Erika that Dr. Reisner gave the ok for Ryan to go ahead with radiation a week early. I just don't know that we can get everything ready in time though. He has to go to Emory to have the mask prepared and they have to have time to plan his treatment. And- we have to order his chemo. We will probably just leave it as is since we are doing his birthday party next Thursday night and going to Tifton next weekend. He got a cap in the mail yesterday from our new friends, the Rice family. We shared a house with them at the Lighthouse. If you make your mouth really small and stretch out the "o" you might sound like Ryan when he calls Olivia "Minnesota". Thanks, yall! He loves the farting card, too. We had lots of fun with that yesterday.
Speaking of yesterday, we got to babysit our little friend, Adalynn. She was such a great baby. We had a lot of fun playing with her and remembering what it was like to have a little one in the house. I think Will and Ryan enjoyed her as much as me and Gramma.
Gramma is flying home today. We are all going to miss her a lot, and we're so thankful that she was able to come for a visit. Heidi comes home tomorrow from soccer camp. We have been missing her all week and can't wait to go pick her up. Saturday is Will's birthday. I can't believe he will be 13. He has grown up a lot this past year-in many ways. I have been really proud of him lately. He has been so helpful and especially thoughtful while I was sick. He has taken over many jobs around the house and usually does them without any complaints. He will be having friends over on Sunday to swim and celebrate. The kids have a meet on Saturday. He is hoping to allstar in long-free. That would give him 5 for this year-the most he's ever gotten in one year. Way to go, Will
Speaking of yesterday, we got to babysit our little friend, Adalynn. She was such a great baby. We had a lot of fun playing with her and remembering what it was like to have a little one in the house. I think Will and Ryan enjoyed her as much as me and Gramma.
Gramma is flying home today. We are all going to miss her a lot, and we're so thankful that she was able to come for a visit. Heidi comes home tomorrow from soccer camp. We have been missing her all week and can't wait to go pick her up. Saturday is Will's birthday. I can't believe he will be 13. He has grown up a lot this past year-in many ways. I have been really proud of him lately. He has been so helpful and especially thoughtful while I was sick. He has taken over many jobs around the house and usually does them without any complaints. He will be having friends over on Sunday to swim and celebrate. The kids have a meet on Saturday. He is hoping to allstar in long-free. That would give him 5 for this year-the most he's ever gotten in one year. Way to go, Will
I went to see Dr. Losken. No news there. I go back in 2 months. Ugh! I didn't know he was from S. Africa, too, and knows Dr. Reisner. Small world, eh?
Monday, July 14, 2008
To the E.R.-just to be safe.
We had a nice slow day yesterday. Les and the boys went to see "Hancock" while Gramma and I took Heidi to soccer camp. I miss her already and she won't be home till Friday. :( I am so glad her friend, Michelle, went with her. We have been washing Ryan's hair/head morning and night with Johnson & Johnson and putting antibiotic cream on his sutures. I got worried this morning when some of his hair was stuck to his head. It looked like there was some drainage and/or bleeding. We called Dr. Reisner's office, but we decided after waiting half an hour to just go ahead and drive down to his office. I wasn't going to let them talk me out of it over the phone. He had been on-call all weekend so we didn't expect to see him, but figured somebody could look at it and tell us if there was a problem. His office sent us over to the E.R. so the doc over there called Dr. Reisner and talked to him about Ryan's head. He wasn't too worried since Ryan did not have elevated pressure (intracranial, I'm guessing). They gave us gauze to put on it and some stretchy netting to hold it in place. He has covered it with a cap! We will be able to see how much it is draining. We are going to stay on top of it to make sure there is no problem. Please pray for no infection. That is something I fear-not that I think this is.
I go back to see my plastic surgeon tomorrow. I am anxious to get moving on getting finished with all my stuff-especially before school starts back.
I want to share a funny story with ya'll. You may not think it is funny, though. We have a cat, Freckles. Not a pretty cat or a friendly cat. A lucky cat that Heidi rescued from a storm drain several years ago. Anyway, about two months ago, a small gray cat appeared in our yard. It was starving and very sweet and affectionate, cute, too. We fed it and it stuck around. I met my friend, Diane, a couple weeks ago for lunch. When I left I guess the cat jumped from the top of my car to the top side of the garage door. When I shut the garage door, the cat got trapped in the door. This same crazy thing had happened to Freckles last year, but Freckles was lucky (again) and managed to survive. This pretty kitty was not so lucky. Now all that sounds terrible, and isn't the funny part of the story. The funny part is that our friend, Barre, pulled up in the driveway and saw the backside of this cat sticking out of the top of the garage door and thought it was one of Ryan's tricks. He has had a gray cat (that goes to the hospital with us most times) for years. The kind that doesn't eat, poop, or meow. It just sits. Well, when they discovered it was the real cat, they tried to hide it from him thinking he would be really upset. He saw it and all he said was "Oh crap!". He and his dad buried it and said a few nice words. Crazy!
I will let you know how the drainage goes. Please pray it is all normal. Thank ya'll so much for your prayers and kind words. Love, Les, Missy, Heidi, Will, and SuperRyan
I go back to see my plastic surgeon tomorrow. I am anxious to get moving on getting finished with all my stuff-especially before school starts back.
I want to share a funny story with ya'll. You may not think it is funny, though. We have a cat, Freckles. Not a pretty cat or a friendly cat. A lucky cat that Heidi rescued from a storm drain several years ago. Anyway, about two months ago, a small gray cat appeared in our yard. It was starving and very sweet and affectionate, cute, too. We fed it and it stuck around. I met my friend, Diane, a couple weeks ago for lunch. When I left I guess the cat jumped from the top of my car to the top side of the garage door. When I shut the garage door, the cat got trapped in the door. This same crazy thing had happened to Freckles last year, but Freckles was lucky (again) and managed to survive. This pretty kitty was not so lucky. Now all that sounds terrible, and isn't the funny part of the story. The funny part is that our friend, Barre, pulled up in the driveway and saw the backside of this cat sticking out of the top of the garage door and thought it was one of Ryan's tricks. He has had a gray cat (that goes to the hospital with us most times) for years. The kind that doesn't eat, poop, or meow. It just sits. Well, when they discovered it was the real cat, they tried to hide it from him thinking he would be really upset. He saw it and all he said was "Oh crap!". He and his dad buried it and said a few nice words. Crazy!
I will let you know how the drainage goes. Please pray it is all normal. Thank ya'll so much for your prayers and kind words. Love, Les, Missy, Heidi, Will, and SuperRyan
More pictures.
Here are a few more pics of our hospital stay. You can see the crowd we had in Ryan's room the night before his surgery. Thanks, everybody for coming by. Our friend, Kellie, sent him a balloon and a gift card for the gift shop. Thanks, Kellie!! He was quick to go to the gift shop and get some straw/glasses and a remote control car. Thanks, Morris, for hooking us up with the batteries. The first picture is Heidi and Will (really worrying about Ryan) playing with Meredith during Ryan's surgery. We did go to the swim meet on Saturday. It was a fast meet and we didn't stay but a couple of hours. Both of Heidi's relays qualified for state, but she barely missed it for free and fly in individuals. Will qualified for both relays and short free. He finished in first place for short free!! He got 4th in breast-they only take the top three. So- we will be heading to Tifton the 25th for state. We'll have to work in some cake and fun for Ryan's birthday on Saturday the 26th. We've got company. I will update more later.
Sunday, July 13, 2008
Pictures!
These are from our trip to Helen and Chucky Cheese. County Ryan's fingers to see how many strokes it took Les to make that shot. He's doing great. I will add more pictures later.
Saturday, July 12, 2008
Ya'll Are Never Gonna Believe This!
Dr. Reissner came in this morning and said we could go home!! Ryan said he knew it all the time! He has done so great. He ate some waffles, sausage, and a sugar biscuit last night after everyone left. Then at 10:30, Les went over to McDonalds and got him 6 chicken nuggets that he ate. We are home and cleaned up. It was a very long night. The kids and grandparents don't know that we are out, and we are going to surprise them at the swim meet. This is the state qualifying meet, and the kids have worked so hard. It will be a great surprise. Don't get me wrong, Ryan is not 100%, but he will be there soon. Love ya'll!
Friday, July 11, 2008
It's a 10
Ryan is recovering in the PICU, and we have all invaded the waiting room just waiting to go in and see him. Les did get a peek at him as they rolled him by. Dr. Reissner said that on a scale of 1 to 10, the surgery was a 10!! Woo-hoo!!! What more could we ask for? They got all of the tumor and verified that with the MRI. The biopsy was positive for NB. We all knew that in our hearts. He said that Ryan only lost 3 tablespoons of blood. I know the hard part is over, but not for Ryan. The next couple of days will be tough. Please keep praying for his recovery. Love, Les, Missy, Heidi, Will, and SuperRyan
It's Out!
We have not been able to update the site at the hospital. Their security system won't allow you to bring up personal blogs. :( Thanks to Lauren McSwain we can update on her computer!! We checked in yesterday around noon and Ryan zipped through the MRI which showed that the tumor had shrunk to 25% of its original size!! He said that would make it easier today. We had lots of company last night. The Howards all came including Lauren, and Sarah and Ryan. We missed you, big Ryan! Melinda, Pinky, and Elizabeth (Lighthouse BFFs) came too. Ryan had such a great time. It really kept his mind off things. He got red blood last night and platelets about 3 am. He slept all night. We actually had to wake him up to get some time with him this morning and get him to brush his teeth. We went down with him to surgery. He was very calm. We got a call that surgery had started at 9:17. We got another call around 10:30 that they had sliced and frozen a specimen and sent to pathology. We got another call just a few minutes ago that they were doing the intra-operative MRI and would then put in the ommaya reservoir, and then close him up. I can't wait to get him awake and talking to me. Thanks for your many messages, phone calls, and visits. We are being kicked out of our room here on the AFLAC unit, and are moving to ICU (hopefully not for long.). Please keep praying that he doesn't have any complications-no bleeding, no infection! Thank you! Thank you! Thank you! We love ya'll! Les, Missy, Heidi, Will, and SuperRyan
Wednesday, July 09, 2008
Checking in Tomorrow
We've had a fun filled day today. Ryan's buddy, Matt, came early this morning to play with Ryan. We went to see "Walle" and then went to Chucky Cheese for pizza and 200 tokens! I took pictures and I'll post some tomorrow while we are sitting around the hospital. We are supposed to check in at 12 noon tomorrow at Scottish Rite. Ryan wants to go by the mall first and see the people who are living in a car to try and win it- a local radio station stunt. He has an MRI at 1:00. We will be on the Aflac floor, and we hope to have a nurse we know. They will check his counts and make sure his platelets are good and high for the surgery on Friday. We managed to get the tattoo taken off tonight, but no luck with the rest of the red paint. Please pray that the surgery is as easy on Ryan as possible, and that he has a fast recovery. We will post when we can. And- please pray for our friend, Carrie, as she gathers with friends and family to celebrate Luke's life on Saturday. I know it will be extremely difficult for her, and we wish we could be there. Thanks for checking in on Ryan and for your many prayers and well wishes. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, July 06, 2008
Thanks, friends!
We shared a delicious dinner with my chemo buddies last night. I am so grateful for how good Linda and Karen were to me during my chemo days. We actually had some good fun during our every other Monday lunch dates in C-Bay. I stuck in a picture of Ryan's tattoo. I snapped it first thing this morning. He is wanting to play putt-putt golf today. We are thinking about heading up to Helen and tubing and, of course, a round of putt-putt. We have an appt. tomorrow at Emory to get his radiation set up. Please pray it doesn't worry him. You just never know. Thanks for checking in. Love, Les, Missy, Heidi, Will, and SuperRyan
A few new costumes...
Here are a couple pictures from our weekend. Don't worry, he wasn't really injured. He just put together a new costume! He did have fun with it, though. The other picture is him out by our pool. He was mad about something. Some days, he just has no patience. I think it is related to his keppra.
Friday, July 04, 2008
Happy 4th!
We all had a great time at the Lake Lanier WaterPark yesterday. It wasn't unbearably hot, so that made it really nice. We are looking forward to a slower pace today and some good family time. My mom is cooking ribs and all the fixins for everyone at the farm. We have a few fireworks left for tonight. Ryan picked up a few gruesome tattoos yesterday. He put one on his bald spot (where they did the gamma knife) so it looks like his brains are hanging out. It looks like maybe his hair is starting to come back there.
Ryan has an appt. at Emory Winship Monday morning to prepare for the radiation. I tried to get an appt. to go back to see Dr. O'Regan at the same time, but she is on vacation. It will be nice to get this appt. out of the way before his surgery. They will make a net-like mask that goes over his face and fastens to the table to hold him perfectly still. He will have fun with it afterwards. Speaking of fun, we are thinking about heading to Helen on Sunday for some tubing. We hope the water level isn't too low.
Please pray for our dear friend, Carrie. Her little Luke passed away on Tuesday. They are back in Florida today with their family. She has been so strong and brave taking care of him by herself. Our hearts are just broken for her.
We hope you have a wonderful 4th with your friends and family. Thanks for checking in on us and for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Ryan has an appt. at Emory Winship Monday morning to prepare for the radiation. I tried to get an appt. to go back to see Dr. O'Regan at the same time, but she is on vacation. It will be nice to get this appt. out of the way before his surgery. They will make a net-like mask that goes over his face and fastens to the table to hold him perfectly still. He will have fun with it afterwards. Speaking of fun, we are thinking about heading to Helen on Sunday for some tubing. We hope the water level isn't too low.
Please pray for our dear friend, Carrie. Her little Luke passed away on Tuesday. They are back in Florida today with their family. She has been so strong and brave taking care of him by herself. Our hearts are just broken for her.
We hope you have a wonderful 4th with your friends and family. Thanks for checking in on us and for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, July 01, 2008
We're going in...
Ryan's surgery has been scheduled for Friday the 11th for the residual tumor extraction and ommaya port placement. He will have 2 weeks to recover, then move to 10 days of whole brain radiation. We are hoping to start radiation July 28th. This will take us through August 8th and then be available to start 3f8 as soon as we can in NY. It's a lot, we know, and we are going to work as much fun as we can into all of it- and Ryan's birthday falls in the midst of it, too. (Is there a special surprise brewing ??)
His platelets were 67,000 today. We saw lots of friends from Camp Sunshine and got some more details of Ryan's week. He has been holding out on us. He got the "pre-teen heart-throb" award at camp. Evidently there were a few girls who hung close to him last week. We are still working on getting the red paint out of his hair.
That is all for now, too tired to think about all of it. Thanks for checking in on us. Please keep Ryan in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
His platelets were 67,000 today. We saw lots of friends from Camp Sunshine and got some more details of Ryan's week. He has been holding out on us. He got the "pre-teen heart-throb" award at camp. Evidently there were a few girls who hung close to him last week. We are still working on getting the red paint out of his hair.
That is all for now, too tired to think about all of it. Thanks for checking in on us. Please keep Ryan in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, June 30, 2008
We are so glad he's home!
We had a wonderful weekend. It was so great to get Ryan back home. We had some friends over Saturday night for a campfire and smores-and a few fireworks. It was a blast-literally. We had intende