- 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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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
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
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 SuperRyanMy 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=2009-60461I 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.