- 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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Monday, January 31, 2005
Ryan had a good check-up today at the clinic. His counts were good and he didn't need blood or platelets. Yea!! He was tired, but perked up for some ice cream on the way home. He ate more tonight and seems to feel a little better every day. He got letters and a video message from his class and absolutely loved it. We got another surprise Friday night when Deanna and Cindy from FORM came by and brought us gift cards for gas, groceries, and movie rentals. This group is so phenomenal. Thank ya'll once again. Please continue your prayers for Ryan and all the children that we have met along the way.
Friday, January 28, 2005
There's no place like home
It is so awesome to simply lie in the floor in front of the fireplace watching Ryan sleep on the couch, without a pole nearby. Dr. Chiang let us come home today. Ryan is so incredible. Out of the hospital on Day +14 (the absolute earliest possible) and home on Day +15. He went with Les and I to pick Will up from school. Sitting in the carpool line, we could see his classmates through the classroom window. We just couldn't resist tapping on the window to say a quick "hi". They all ran to the window to wave and smile at him. He can't wait to go back to school. I have been in touch with his hospital/homebound teacher and she will be coming out to teach him at home until he can go back. Ryan's white count jumped from 7000 yesterday to 12000 today, which explains the pains he was having last night. That quick rise causes bone pain. We are hoping he is going to eat soon, but we have put him in charge of that. He always knows when and what to eat so he doesn't get sick. We are so very happy to be home and have us all under the same roof again. There, truely, is no place like home.
Thursday, January 27, 2005
Leaving with mixed emotions
We left Egleston today around 2:00. Ryan was sick a few times last night and early this morning. He still hasn't eaten anything. He is getting fluids tonight and we will be in the clinic in the morning to see Dr. Chiang. He was very quiet leaving today. I'm not sure if that was because he wasn't feeling well or because he, like his Dad and I, had mixed emotions. We are so excited about finally getting to go home, but we will miss our wonderful nurses who took such good care of Ryan: Nancy, Jessica, Kathy, Andy, Courtney, Mandy, Maggie, Leah, Erika, Rachel, Jenifer Lynn, Tammie, and especially Dawn. What a support team we had. Our Nurse Practitioner, Ellen, kept up with every detail of Ryan's treatment. She is awesome. Sara, the Child Life Specialist, knew just what kind of toys Ryan liked to buy with his BMT bucks. We will also miss the other families that we have shared this unforgettable experience with and will most certainly be keeping up with them in the future. Ethan's family is just across the hall from us in the hotel. Please continue your prayers for Ethan as he goes back for his second transplant in a few weeks. He is such a little trooper. Tommy is still a few days away from starting to feel better. Please pray that his transplant will rid his body of his cancer forever. Thank you all for your prayers for Ryan. We are so relieved to be through the transplants. We knew this stage of his treatment would be the toughest. We are looking forward to going home and moving on to the next phase. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, January 25, 2005
On our way
We are leaving here on Thursday-NEVER to return (as inpatient, anyway). Ryan's white count jumped to 2.45 today!! They have taken him off all meds except the Neupogen to boost blood cell growth and they have to slowly turn down his Morphine. He doesn't complain of any pain. His poor little tooth is still hanging in there. He got platelets last night and blood this morning. He had a visit a few days ago from Dr. Rapkin which really cheered him up. They named his crow puppet that his Nanny had brought Dr. George. He got to shop a little with Sara yesterday. He bought a spy gear wrist camera. It didn't take him long to figure out that if he took the camera out of the wrist band and put a rock on it, it could be a catapult. He is all boy- all wonderful boy!!!
Monday, January 24, 2005
Slowly, but surely we are getting there
Today is Day +11 and Ryan's white count took a big jump to 1.01 after another drop yesterday. He will get platelets late tonight before they expire. He is feeling better. His mouth looks so much better. He tried some orange juice, but it has no taste and he just can't drink it. The docs mentioned this morning leaving at the end of the week. Awesome!! Our little neighbor, Ethan, is feeling better, too. Please say a prayer for this adorable little 3 year old with Wilm's Tumor, and for Tommy. He is just across the hall from us. He is 11 and relapsed after 4 years off treatment. His brain tumor has returned at the base of his spine. It is so frightening to think that after 4 years, it might still come back. That, I know, will be our struggle. For now, we have to take one day at a time and deal with the task at hand. We will go back to the Marriott for the weekend and home next week. In a few weeks, we will be turned back over to our wonderful docs at Scottish Rite, and they will set up our radiation. We will come back to Emory for that. Ryan is actually looking forward to getting "shot by the laser gun". He is a true Star Wars fan.
Friday, January 21, 2005
Still lots of owies
With day 8 behind us Ryan is still in a lot of pain, between his blistered throat, nose, mouth (spitting up a lot of dead tissue and blood), a tummy ache, and rash that just keeps getting worse.
It hurt to put his hands in the bath water tonight and talking or swallowing is very painful.
On top of all that, his top front tooth is close to just dropping out, we need it to wait a couple more days for his counts to really begin to recover.
We all wish we could take these little guy's place when you see them in such pain. Thank goodness for morphine, I can't imagine him without it right now.
We're hoping for a better day tomorrow and there is still a good chance on us getting a lap or two in late tonight.
Thursday, January 20, 2005
Getting a little closer
Today is Day +7 and Ryan's white count is .23!! It did dip back down yesterday to <.1, but his white cells will get used up fighting infection as soon as they are made. Hopefully, they will go up, up, and up from here. He walked 13 laps at 1:30 this morning. Les and I had to walk in our pj's, but Ryan absolutely refused to go out in his pajamas. His mouth is still very sore and it is difficult for him to talk. We have been looking at puppies on the computer. He wants to get a puppy that can sleep on his bed. He is so excited about that. I don't know how Les and I will ever manage with a dog in the house, but we just will. We got our new green wrist bands yesterday. You can purchase green "reach the day" wrist bands like the yellow "live strong" ones at CureSearch.org (go to the gift shop) that will fund pediatric cancer research. Thank you all for your continued prayers. It looks like Caroline will be going home in a day or so. I know they are so looking forward to a break, please continue to pray for her. She still has one transplant to go. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, January 18, 2005
And, up we go
Ryan has a little bit of a white count today (.15). Yahoo!! His poor little mouth is so sore, so maybe these cells will help soon. He got red blood cells yesterday, and platelets the day before. We are lucky that Ryan's grand-daddy donates platelets just for Ryan, but many children have to wait, as platelets are not as readily available. You can contact your local Red Cross or call 1-800-826-2026 if you would like to donate blood or platelets. We moved to room 360 yesterday (we had a little critter). This room is considerably larger, so that is nice. Dawn and I decided this morning that this was our official room change this visit as we do not want to move to ICU.
Monday, January 17, 2005
Hopefully, this is the last bad week
Normally, kids start feeling better around Day +10. Today is Day +4 for Ryan. He is on 2 antibiotics, an anti-viral, an anti-fungal, pain meds, nausea meds, itching meds, tylenol, and, occasionally, lasix. It is hard to keep up with it all, but it is still less than last go-round (so far). Last time we went to ICU on Day +7, so we still have a ways to go. His white count has been <.1 for a couple of days now. He starts his Neupogen tomorrow to boost the production of blood cells. It will be so great to watch the numbers go up and Ryan start to feel better. He slept most of the day yesterday, and then woke up around 10 pm and walked 8 laps, in full Darth Vader gear, including his boots. I will post a picture of that later when I go home. We are buying a digital camera, finally, with our Christmas money. That will make posting pictures so much easier and quicker. I forgot to tell you what he said just after his transplant last week. He said he didn't like that transplant, it made sparks go off all over his body. That's what he feels when his foot or hand goes to sleep, sparks. His very quick and sweet nurse, Dawn, told him those were the fireworks going off in his body to celebrate the return of his stem cells and his getting well. This time she made me want to cry. Thank you all for your prayers and support. Please keep praying for total healing. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, January 15, 2005
Slow uphill battle
Ryan's white blood cells are as close to zero as you can get. He has had a low grade fever (under100). He had asked Missy if he could ever "run out of air". He had to have oxygen the day of his transplant to bring his O2 levels up, and he told me at 3am , (for the third time) that he wished he had "never gotten his tubes" (he equates those with the reason he is sick) but he is "just happy to be alive" :( It's hard to tell what is churning in his mind that he doesn't say. After several minutes of reassurance, he went on to tell me how much he loves his friends, family, and his pets (past and present) :)
He has progressed through this absolutely draining stage with strength and determination, and we are so very proud of him. It's bad enough to be this sick, but to be away from Heidi, Will and his home makes it so much harder for him to stay upbeat every day.
Please step up your prayers if at all possible. The feeling of knowing that we have used his last vile of stem cells gives a sense of urgency for them to take hold and begin to generate new cells. A bump in the road at this time is not what we need!
This disease feels as if you are climbing a 1000' shear rock face without a rope. Your fingers are cut and bleeding and you have made it three quarters of the way up. You're telling yourself you can't go back, but how can you possibly push on to the top. Then you realize it's not you on that cliff at all. It's your child, and you can't assist or rescue him, and all you can do is encourage him to keep climbing from a distance.
We are all going to be so over-joyed when Ryan makes it to the top, but no one will be as happy as Ryan.
Thanks again for keeping us all in your daily thoughts and prayers and may God bless all of you.
Thursday, January 13, 2005
2 for 2
Ryan's stem cell transplant was done around 1:00 with Daddy right by his side. They make a great team. He is having a great sleep now. Please pray that his stem cells will engraft and he will not have any complications. Love, Missy
Visiting with Heidi and Will through the glass
Buying Star Wars stuff on e-bay. See his paper chain?
Ryan, between transplants, in his new army hat from Iraq. Thanks Ms. Jacobs !
Monday, January 10, 2005
NO MORE CHEMO
Ryan finished his chemo this morning. He started chemo exactly six months ago yesterday. He is feeling pretty good. He ate some fritos and did some school work today. Heidi and Will came for a visit yesterday. We celebrated the end of chemo with confetti poppers. Hopefully he will continue to feel this good for several more days.
Friday, January 07, 2005
Here's the article I mentioned- can't link
MONEY STEPS UP FIGHT VS CHILDHOOD CANCERBy Kristin ConnorPublished on: 01/03/05 Somehow, as busy families at Providence Christian Academy in Gwinnett County and throughout the surrounding community prepared for the holidays, they found time to come together on a cold Friday night to honor and remember a little boy who touched more lives in his seven short years than most of us touch in a lifetime.Carter Martin died on Sept. 12, having lost his battle with a form of bone cancer called Ewing sarcoma. Those who knew and loved Carter, and those who didn't know him but who were heartstruck by the impact of this little boy's struggles on all who did, refuse to let his memory die or his death be in vain. So on Dec. 10, a caring community turned their grief into action, raising nearly $50,000 for childhood cancer research in one night. This is how it is with childhood cancer. Once you know and love a child who has it, you can't let it go. For those who knew or knew of the nearly 3,000 children who died last year alone at the hands of the disease, their hearts will never be quite the same.Thousands more have survived the disease's wrath, but at great cost — limb amputations, rounds and rounds of toxic chemotherapy, indescribable and constant pain, and most importantly, the loss of childhood joys and innocence. These children learn all too tragically that even the powerful love of their parents and a strong faith in God does not keep them safe from the wrath of cancer.Because childhood cancer is relatively rare, particularly compared to the incidence of cancer in adults, many people have no idea of the devastating impact cancer has on a child, his or her parents, brothers, sisters, grandparents, friends and the larger community — like Carter Martin's entire school. Many people have no idea of the dire shortage of funding dedicated to research for cures for childhood cancer, no matter that cancer takes the lives of more young people under the age of 20 than any other disease.But this level of awareness is changing, and not a day too soon. Through Web sites maintained by parents of children with cancer and through the bravery of children like Carter and the thousands of others like him, the world is becoming aware. The hearts of our nation were captured by 8-year-old Alex Scott in 2004 as we learned of her efforts to raise money for a cure through a lemonade stand. Alex's lemonade stand raised more than $1.5 million last year.Curing Kids Cancer!, a new program of CureSearch National Childhood Cancer Foundation, will raise millions of dollars for pediatric cancer research in children's hospitals nationwide. This program began right here in Atlanta, inspired by Killian Owen, who lost his battle with leukemia last year at only 9 years old. Determined to spare others the same fate as Killian suffered, Killian's mother, Grainne, has become a tireless advocate and leader in fund-raising efforts.Even professional athletes are rallying behind our children. Tom and Chris Glavine have become champions of the cause, persuading Major League Baseball to raise money for research through the Commissioner's Initiative for Kids. Right before Christmas, Major League Baseball delivered a check to CureSearch for nearly $725,000. With the hope that this money brings, I cannot think of a better holiday gift for children with cancer.The promise of this local and national support for childhood cancer is unmistakable. St. Jude's Children Hospital in Memphis has launched a national advertising campaign to raise money and to bring awareness to the need for more research into childhood cancer.We know concerted research efforts work. The fight to defeat cancer has witnessed amazing success just in my lifetime, as survival rates for childhood leukemia have gone from about 10 percent to nearly 85 percent. Success rates for other childhood cancers have improved, too. The dramatic growth in survival rates for some cancers has occurred only because of targeted research dollars. We know this approach works.But we must do more — much more. Many childhood cancers are so rare that funding for them is limited. The reality for too many children and their families and friends is that cancer kills.Yet doctors tell us that a cure for childhood cancer can be found in our lifetime with the proper funding. We in Atlanta are determined to deliver the funding to these doctors so that they can deliver a cure to our children. Please help us fulfill the promise of a cure as we move into a new year.• Kristin Connor, a lawyer, has taken a leave of absence from her legal career to work with the National Childhood Cancer Foundation.
One down, but many more to go
Ryan's chemo started early this morning. He has been pure entertainment for a couple days now. The docs and nurses just love to see the real Ryan, and we love them getting to see his real spirit. His nanny and grand-daddy came today and had a great visit. He already misses Heidi and Will a lot. We are hoping he will still feel well enough on Sunday for a visit. Caroline got her stem cell transplant on Wednesday. It seems to have gone well. Hayley's mom has updated her site and included a recent article from Brandon's mom. I am going to try and give a link to the article in a day or so, but you can check it out on Hayley's site. Her address is below. We are hoping for a smoother stay this go-around. We do have room for improvement. Please keep praying.
Tuesday, January 04, 2005
We Just Couldn't Wait Another Day!!
We have been enjoying these warm days, maybe a little too much. Ryan, Dad, and Will rode bikes, played basketball, and, in general, had a busy day goofing around. He started running a temp. around 8:00 last night so we came straight to Egleston where we got a room around 3:00 this morning. He has had no more fever and has eaten steadily all day. We are going to be moved into a BMT room this afternoon. The drs. have decided to push his transplant back one day. We will start chemo on Thursday and his transplant will actually take place on Jan.13. We were bummed to lose our last day at home and we really had no formal send-off for Heidi and Will to say their good-byes, but we are anxious to get started and get the show on the road. Sooner started, sooner finished. Please continue to pray for Ryan's cure. Love, Les, Missy, Heidi, Will, and SuperRyan