- 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.
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Friday, April 29, 2005
Sunday, April 24, 2005
Cancer Fundraising In Full Swing
Ryan is so proud of himself. He can swallow both of his pills at the same time!! He is having some dry skin on his face and his lips are so dry, but we are trying our best to keep him lubed up. We survived the strong winds and cheered on the end of the Tour de Georgia today. We met Kristen Conner and Melinda and Robin from the Lighthouse. It was nice to see familiar faces from Scottish. On Saturday, we went out to the UGA Chi Omega's kickball tournament to benefit the Make-A-Wish Foundation. They had an incredible turn out of students supporting their effort. They were happy to meet Ryan and hear about his upcoming wish trip. I will post some pictures tomorrow. Thanks for your continued prayers.
Thursday, April 21, 2005
What do we consider “Good News”?
A late afternoon doctors visit is when we officially learned that Ryan's latest CT and MIBG scans were clear as a bell. Thank you God and good medicine! Dr. Anderson will be sending us 2 side by side comparisons, one of Ryan's bones (the mibg scan), and one of his tumor (the ct scan) from June 04 and then the latest one in April 05. Clearly, even to the layman, both scans show how effective the protocol Ryan has endured can wipe out one of the most aggressive cancers known to children of his age.
We began with devastating odds of around the 30% mark and now find ourselves nearing 50%, the upper reaches of Stage 4 Neuroblastoma. One very strong young boy's fight to not only fend off this cancer, but simply come through an extreme therapy treatment with the smiles, vigor, and a will to do what ever is asked of him by his doctors without complaint.
But after all the sighs of relief about the scan outcome were over, we ask ourselves, where have we really gotten to? Is this a day to celebrate? sort of. But would anyone be happy if a doctor had given your child even a 90% chance?
So we will be here, helping Ryan fight the battle and praying for the day our doctors deliver the real words we are after, “Ryan is cured”. I guess the point I'm driving at is that we still need your prayers, we need your resolve to continue over the next few years to see Ryan through to his CURE.Thank you to each and everyone of you for supporting Ryan and our family, you'll just never know how much that means to us.
Wednesday, April 20, 2005
3 Hospitals in A Single Day, Yikes!
We literally took Ryan out of his bed and put him straight in the car this morning. We were able to move our MIBG at Scottish Rite up so we could make it to our appt. at Emory with Dr. Marcus. The day couldn't have gone better. He only had to be scanned twice for about 15 minutes each. Our wonderful nurse, Erika, called about two hours later with a preliminary report that "it looked good". She called again later with a preliminary CT report that "it looked good" too! Dr. Anderson called just a bit ago with more detail, and we will get to see the pre and post scans tomorrow at the clinic, but basically there is no evidence of active disease. He talked about some calcification that was evident, as was in the last scan, so all is good, no, fantastic!Ryan stopped by Egleston to let Dawn test some chocolate lollipops fresh out of the Chocolate Factory. Dr. Marcus gave him a good report. We don't have to go back to Emory for 6 months!! Thank you all for your prayers. We will post with more information after our appt. with Dr. Anderson.
Monday, April 18, 2005
The Last Phase of Treatment Has Begun
We got started with the Accutane Sunday morning at breakfast at Camp Sunshine. He was a little tearful, but he got the two pills down fairly easily. Last night and again this morning were even easier. The pills are not too large. The largest is sort of like a Tylenol capsule. We all had a hard time getting up this morning from our busy and fun-filled weekend. We were all pooped. Thanks to those who have posted messages on the website. Ryan and all of us enjoy them and they really lift us up. Please keep praying for his cure. Love, Les, Missy, Heidi, Will, and SuperRyan
They tasted good, too!
We didn't even get wet
We loved Family Camp!!
Having a blast!!
Sunday, April 17, 2005
Camp Sunshine's Awesome Family Camp
Where to start? How about Friday afternoon, when we remembered at 4:45 to mail our taxes? Oops! So that was our first detour, by the open all-night post office in Athens. We headed about an hour south for Camp Sunshine. We had a great welcome from a ton of volunteers. What a job they did all weekend long!! Everyone was so great and helpful. The activities began the minute we arrived and lasted until the time we left on Sunday morning. We played putt-putt, canoed, panned for gold, cooked and decorated cookies. Some of the kids favorites were kick-ball, basketball, and archery. The fishing and paddle boats were lots of fun, too. There were sing-a-longs at every meal and we brought home a great CD to help us remember the fun times. The play ground was always full of kids. Each family painted a flower pot, and we were amazed by their creativity. Les and I got massages that were incredible. The best part, besides seeing our kids having so much fun, had to be meeting all the other families and hearing their inspirational stories. It was so great to finally meet little Jack and his moms and Chandler and his family, and little Catie was just too precious. We made lots of new friends that we will be keeping in touch with. I will post pictures tomorrow. Tomorrow will actually be a slow day as we have scans on Tues. and Wed. and dr. visits on Thurs. Please keep praying for clear scans. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, April 11, 2005
Spring Break Was Just What We Needed
We had such a great week together! We spent Monday at Malibu Grand Prix with my friend of more than 20 years, Diane, and her kids. She is one of Ryan's favorite "I Spy" and Rat-a-tat-cat buddies. We rode go-carts, bumper-boats, and played 36 holes of mini-golf. Whew! We hit Six Flags on Tuesday. I will post some pics soon. We took Matt, and he and Ryan had a blast. We were stopped by a pastor on the way to the little boy's room who told us that while watching Ryan play, the Holy Spirit had spoken to him and he asked to speak to Ryan. It was very moving and I will never forget it. He told Ryan that from this day forward he would start to feel better and that he would have a long, full life. I just got the boys to the bathroom and boo-hooed while I stood outside waiting. That is what we pray for everyday. We stayed home on Wed. and got our chores done (well, at least I did). Ryan had a check-up at the clinic on Thursday. We had a great visit with Brady, Conner, and their mom. Ryan's counts continue to go up and down which doesn't concern the docs. We finally got to see Dr. Rapkin's bald head!! The kids spent Thursday night at the farm with Nanny and Grand-daddy and played there for a while on Friday. We had friends over Saturday for a bon-fire and marshmallow roast, or rather burn. They just liked setting them on fire. So this week is back to soccer games, and the kids have testing at school (no homework, yea!). Next week will be rough. Ryan already had a dentist appt. on Friday, a check-up on Thursday, and a re-check with Dr. Marcus at Emory on Wednesday. Now, they've added follow-up scans: a CT on Tuesday, which means an IV (#@$%!!!), and another MIBG on Wednesday. This test is particularly unpleasant for Ryan. He hates having his feet tied together and lying still for so long, and he has to drink iodine for 7 days to protect his thyroid. Please pray for his tolerance and for clear scans. We want a nice dark MIBG. Love, Les, Missy, Heidi, Will, and SuperRyan
The Speed Demons
Having a Ball in the Bumper Boats
Saturday, April 02, 2005
Willie Wonka Jr. and the Chocolate Factory
The chocolate factory has finally arrived!! He has wanted this for so long, and we finally ordered it to keep him calm and distracted during one of his last dressing changes at Egleston. He had such fun making chocolate bears, flags, shells, and heart lollipops. Now, if we can get him to eat them. If you click on the picture, you can see his hair coming in and his cowlick is definitely back. :) His buddy, Matt, is going to Six Flags with us in a few days. All of the kids are looking forward to that and being out of school. No other news, isn't that wonderful?
"Is my cow-lick showing?"
Friday, April 01, 2005
Is it finally Spring?
Ryan is feeling super- like his super-self!! I got to spend the day with him at school yesterday doing math activities and comparing him to the other kids, he is holding his own. He is trying to finish up some books that his teacher sent with him when he left school in November. His class went on a field trip to the Elachee Nature Center, and he got to hold a corn snake-yucch! Our Spring Break is next week. We will mostly be here swimming and playing games. We will go to Six Flags on a warm day, and we have promised the kids a trip to N. Ga to go horseback riding. He does have a clinic appt. next week. Later this month we will start the oral meds and his re-immunizations. It is very likely he will have to get all his shots over again as they were probably wiped out during transplants. He does seem to be getting used to the needles, though this is never fun. Please keep praying for his cure and for his little friends. Love, Les, Missy, Heidi, Will, and SuperRyan