- Name: Ryan
- Location: Athens, Ga, United States
Our son Ryan was diagnosed with stage 4 Neuroblastoma in 2004. In 2007, my wife Missy was diagnosed with stage 2 triple negative breast cancer. On July 8th, 2009, Missy lost her battle to this horrible disease. 2 days later, on July 10th, Ryan also lost his. Together forever, they both watch over our family now from the heavens above. Below is our families journey through Ryan's treatments, along with the joy and laughter we tried to instill into our daily lives. Those days helped us all cope with the pain and suffering that comes with cancer and it's deadly treatments. Both Missy and Ryan endured high doses of chemo, radiation and surgeries. Over 150 nights spent in the hospital and many, many more days. More transfusions than I could count. Yet both Missy and Ryan took on each day with a positive attitude and warm smile for all their friends. We miss them terribly. They will always be a shining light in our lives.
Monday, October 29, 2007
No day at the BEACH
We stopped by Dr. Gary's clinic on the way home to get Ryan's labs drawn and got a call from Erika around dinner time with his counts. His white count is 0.4 and his hemoglobin is 7.7 (below transfusion level). He will get labs again on Wednesday at the clinic and most certainly blood. That will make him feel better for trick-or-treating. I'm sure he will have fun at the clinic in his "mad-bloody-surgeon" costume. We asked about his scan and she called us back quickly with those results. We have been really worried about it all weekend, but are thrilled to report that there are two areas that lit up. Both were there before and both look better than on the last scan. He will continue to get labs M, W, and F until the harvest which will probably be next week. He is tolerating his shots at home much better than we are! Please pray that his counts go up as we hope and they can get a nice harvest of stem cells. The central line won't be put in until they know for sure, they will be able to get the stem cells. Lots of love, Les, Missy, Heidi, Will and SuperRyan
Thursday, October 25, 2007
Relapse...a horrible word
Tuesday, October 23, 2007
Headed in this morning, early!
I didn't learn any results from my tests last week. Evidently, the report did not include a pre-chemo comparison so Dr. O'Regan sent the report back for that. She did give me the ok to try an amino-acid supplement that is supposed to help with the tingling in my hands. Thanks, Julie! I can't wait to get that started.
For the third treatment day in a row I have come home to dinner delivered by some of the speech therapists in the county. I am so blessed to work with such a great group and I am so very thankful for their gifts.
Thanks for checking in and please continue to pray for Ryan and all his friends fighting. We finally took the plunge and signed onto the NB list-serv and the numbers of kids out there is staggering. We need our cure for all the children. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, October 22, 2007
When it comes to research...it's hind teat
Sunday, October 21, 2007
Birthdays, birthdays everywhere!
We have had a busy weekend already and we still have Sunday to go. As you can see from the picture, Heidi had a soccer game yesterday. They beat this team at Rockdale 2-0 even though their team was short a player and the other team had 5 subs. Way to go, Orange Crush!! She had birthday parties Friday and Saturday night. I can't believe her friends are starting to turn 15. Two of her best friends got their learner's permit yesterday. Yikes! Her birthday will be here before we know it. Will had a birthday party yesterday and so did Ryan. Thanks, Shannon, for letting Ryan hang out with ya'll before and after Broderick's party. My mom and dad rode with us to Heidi's game and it was nice for them to get to go. We are having a party at our house today to celebrate what would have been my brother's 50th birthday. I am looking forward to that and hope to get some good pictures.
On the medical front, we got a call late Friday changing Ryan's schedule for the week. Dr. Haight (transplant dr.) doesn't want Ryan to get Topotecan this week. He will only get Cytoxan and in larger doses. He and Les will check in to SR on Tuesday for chemo Tuesday and Wednesday and that will be it. I guess we will learn more on those days about when and how he will get the Neupogen to boost his counts for the harvest. I hope it isn't shots cause I don't think I can give him shots. Also, he will have to have a temporary line put in for the harvest (not scheduled yet). His port is not strong enough for the apheresis machine and a larger line will be needed. Dr. Haight explained to us a few weeks ago that he will be put to sleep to put it in, but not to take it out. That taking out part will be a little creepy, I think. Also, Ryan will have an MIBG injection on Tuesday and scan on Wednesday. We aren't really sure what to pray for. If his scan comes back clear, he won't be eligible for the ABT-751 trial or any trial, but if it comes back clear, he has no cancer!! We have to believe though, that there are cells still there and they will just multiply again.
I go back to Emory on Monday for round 5. This last round went a little better with a dose reduction of my oral chemo. My hands and feet didn't burn as bad as before. Each round has been a little different so it is hard to predict what will happen next. I should get results from the ultra sound and biopsy from last week.
We are so looking forward to our mountain trip with the Pecks next week. The kids are out of school for 4 days and a weekend. We are going to have all kinds of fun. Please pray that this round of chemo isn't too hard on Ryan and that he will feel good on our trip. And please pray that whatever the results of his scan, we move in the right direction to keep the cancer away for years and years. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, October 18, 2007
Want it ? You got it !
Can we have a short chemo week so we could take Ryan to the mountains over fall break?
Can we start early in the morning so we can get home at a decent hour?
Would you schedule his MIBG injection and scan while we are already there for chemo next week?
Can you get our insurance to pay for Ryan's stem cell harvest?
Can you co-ordinate his Neupogen shots, surgery, the stem cell rescue and his new ABT-751 trial schedule?
Is there anything else we can do a the moment?
"No, we're good"!!!
That's pretty much what I would call "a great day" in our cancer world. Thanks for the good news Erica. Love Les, Missy, Heidi, Will and SuperRyan
Monday, October 15, 2007
False Start, Deux
Sunday, October 14, 2007
Hey Will, 2 minutes for looking so good!
Tuesday, October 09, 2007
A few Camp pictures
Here are just a few we took this weekend at Family Camp. The first is a couple of Dads and their boys- two special Dads in Ryan's life, his Dad and Dr. Rapkin. Next is Will and Michelle after making spider cookies. Michelle is in charge of everyone having fun and she does a jam-up job of that. And last, but not least, is Heidi and her spider cookie. Fortunately, for ya'll, I managed to dodge the camera especially while eating the caramel apples. It wasn't pretty!
Monday, October 08, 2007
Family Camp was awesome!
On Friday, Les had a lengthy conversation with Dr. George about Ryan's eligibility for the MIBG treatment in Philadelphia. Dr. George learned that Ryan has had too much radiation to 1/3 of his liver and has already appealled to the folks in Philadelphia, but they won't let Ryan take part. So, we are back at square one. We are very disappointed with this news, but we just have to remain hopeful that this is not the path we are to take and that there is something that will work better somewhere else. We are contacting Dr. Maris in Phil. to get another opinion.
Today, Les is taking Ryan back to Scottish Rite for the 7th round of chemo. His counts were much improved on Thursday so we are expecting no delays. I will be at Emory getting my chemo at the same time. This will be my 4th of 8 rounds-half way!!
Please pray for no complications this week and next. A boring week of chemo would be nice. Love, Les, Missy, Heidi, Will, and SuperRyan