- 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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Tuesday, April 29, 2008
2 days down, 3 to go.
The nurse came out Monday around 11 and accessed Ryan's port and got the chemo started. She showed me how to hook him up and unhook him and left. I unhooked him after an hour. It was pretty simple. He begged for food the whole time and I gave in. He ate most of a pretty big omelette and a few bites of blueberry pancakes. As soon as we got in the car, he threw it all up-in his bucket! He never gets far from his bucket when he is nauseous. He slept for awhile after that. Today was much better. I took the chemo out of the fridge at 3 in the morning, gave him his Temador and Zofran at 4 and started the chemo at 5. He woke up around 7 and asked if I had done the chemo yet. Not bad, eh? He went to school and stayed all day. He does so much better in the morning, so this is going to work out great with me doing it at 5 am. Thanks for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, April 26, 2008
No plan yet.
I am so very tired, but I want to post before I go to bed. Our internet has been out and it appears the "chat" thingy is messed up. It has been a long week. We met with Dr. Marcus on Tuesday and Dr. George on Wednesday. We still don't have a plan, but hope to by this weekend. Dr. G. is going to call NY and talk to them for us to get some more information. Ryan has been feeling good. He even went to soccer practice Tuesday night. He has been taking the CRCT this week, and he and I are both glad it will be over on Monday. Today has been an awesome day. I took him and his buddies, Matt, Max, and Jeffrey to play lazer tag. They had a great time! They played at the house all afternoon and even jumped in the pool. They were the firsts of the summer-the bravest for sure! The water is so cold.
The nurse is coming Monday to access him and get his chemo started. We got his Dilantin completely changed over to Keppra. The Dilantin has a narrow therapeutic window, and Ryan never reached that level. He never had any problems in spite of it though, which makes us feel good. He was very irritable on the Keppra, and a quick email to Erika later, we are adding half a B-6 vitamin to see if it helps. I don't know if he was just excited about today's events or the meds, but he couldn't stop talking.
I went back to see the radiation oncologist for a CT. They will take the week to plan, and I go back next Friday for a dry run. I am supposed to officially start May 5. Looks like I will finish just in time for school to get out! Figures.
Thanks for checking in on Ryan. Please keep praying that he continues to feel good, that we choose the right treatment plan for him, and that the chemo gets rid of all the cancer and protects him. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, April 19, 2008
Way To Go, BES!
Our teachers at Bethlehem really came through yesterday at the lunch to benefit CURE. Thank you, Amy and Sandra, for all your hard work. They are our Relay Captains and were so disappointed last year when I explained to them how Relay doesn't really benefit the kids. Our goal this year was to raise money for CURE and Relay. They raised over $700 yesterday! Thank you everyone who came and ate and donated. Ya'll are just amazing and we love you.
We had a bonfire last night and had some friends over. Ryan had a great time running around with Matt and Max. We have soccer today and a Relay dinner tonight. Hopefully, tomorrow we can just hang out and take it easy. Maybe take in some lazer tag. Please say prayers this week as we meet with Ryan's doctors. We meet with Dr. Marcus, the Radiation Oncologist on Tuesday and Dr. George on Wednesday. They have scheduled his next MRI for May 7th. I feel certain we will meet with Dr. Reissner afterwards to get results. Thank you for the prayers you have offered up for us. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, April 18, 2008
I Made It!
Not much would have stopped me. I think Karen had put together a team to break me out, if need be. It wasn't even too bad a stay. I wasn't sick. My IV lasted the whole time, which was so great, even though it did take five or six sticks to get it. My friend, Linda, came and visited on Wednesday, which was nice, and Les and Karen stayed till late on Tuesday. I got out early yesterday and made it to my appt. with the radiation oncologist in Athens. He was very nice and I feel good getting it in Athens. I will have to go five days for six weeks, and with the price of gas so high, this will be great. I think it took 20 minutes to get to his office yesterday. I think I will be able to get an appt. after school, too, so that is an extra bonus.
I met with Dr. O'Regan while I was in the hospital and we decided to scrap the last round of chemo. She thinks I have had enough and why take the risk on another infection? It seems every time my counts drop, I get one. Thank Goodness it didn't happen after the second round cause we were in the hospital with Ryan. So, I feel very refreshed and ready to move on to the next step. I feel like everything from here on out is a step up- up and away from the terrible side effects of chemo. I know just how Ryan felt just wanting his life back.
We are meeting with Dr. Marcus next Tuesday to talk about radiation for Ryan, and then he has an appt. in the clinic on Wednesday to get ready to start chemo again. He is doing good. He seems tired, but I am guessing it is his counts. I haven't seem him much, really, so I am looking forward to soaking up some good time with him and Heidi and Will this weekend. There is a lunch at his school today to raise money for CURE so I am looking forward to that.
And, for those that want wedding details- it was beautiful!!! We couldn't have ordered better weather. It was outdoors at Karen's sister's house. I don't have pictures, yet, but I will try and get some. Karen looked beautiful, as we knew she would. Perry is such a lucky guy! They are off to the N.GA mountains for a few days, a break she really needs!
Thanks for your prayers for us. We feel them. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, April 15, 2008
Darn it !
Missy's check up today ended up with an admission to Emory, don't pass go, don't collect 200 dollars. She is once again battling infection due to low counts after the last round of chemo. She has Thursday as get out of jail day, nothing will get in her way of being at her friend Karen's wedding. So bed rest, antibiotics and plenty of liquids are on the menu for the next couple days. Send healing prayers her way ! Thanks, Les, Missy, Heidi, Will and SuperRyan
Sunday, April 13, 2008
He is doing better.
This round is finished. He is de-accessed and happy. Ryan has done much better the last couple of days with the nausea. The visiting nurses were great-super nice. He will have two weeks off and do it again. We have talked to some other moms whose kids have taken these chemo drugs and they seemed to tolerate it well and even kept their hair. I know Ryan would like to keep his. Please lift him up in prayer that it is doing the job we need it to. I seem to be brewing another infection. I went to see a doc in a box in Athens yesterday and got a shot in my bum and a prescription for more antibiotics. Hopefully, that will keep it down until I see my doctor who I will be calling tomorrow. I really don't want to land back in the hospital! Thanks for checking in on us and for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, April 10, 2008
Hard chemo :(
It has been "nice" the last year for Ryan having only to be on maintenance chemo. He has just his second round of temodar and iranotecan. The vomiting has begun and he is very weak. I'm not sure how he is going to make it through the next three days of this stuff. It brings back memories of his original chemo treatment in 04. He already looks like he is losing weight. He will be doing 5 days on then 20 days off. He will need every one of those to recuperate. We hope to find out when Ryan can start radiation sometime next week and get that on the schedule as well. Maybe we can get Ryan's and Missy's radiation on the same days! That would likely be a first! Please send healing thoughts to Ryan, he can sure use them right now. Love Les, Missy, Heidi, Will and SuperRyan
Tuesday, April 08, 2008
Chemo has been moved up.
We had a good day at school. His chemo schedule had to change so we can get home health services. He is going to get started tomorrow afternoon in the clinic, and it will go for the next four days at home. I hope there is no nausea and vomiting with these new medicines. I'm not thinking that would make his head feel too good. We will update during the week and let you know how it's going. Thanks for checking in. Love, Les, Missy, Heidi, Will, and SuperRyan
Fun in the Bubbly Tub
Ryan had a brief episode of pain yesterday. It happened in the car when my Dad was taking him to their house. It only lasted a few minutes and the pain seemed to ease over a bit. He rested on the couch for awhile, but bounded up soon after asking for some of his Nanny's hotcakes. He got to play with his cousin, Nick, who is out on spring break this week. They had a great time and he wasn't ready for me to pick him up when my chemo was over. I had a better day this time. I had drank lots of water and it seemed to help. Only two sticks to get my IV. Three down, one to go! I called and made an appt. to meet with a radiation oncologist in Athens. I want to get that started as soon after the chemo is over as I can. May 5 is my goal. Karen and I did sneak in a little fun-shoe and hat shopping at Loehmann's!! No new cute sandals for me-my toe is still not pretty to look at-but I did walk away with three new spring hats. Ryan and I will be at school tomorrow. We are both a little nervous, but I know everyone will be looking out for him. He needs his sense of normalcy and routine. If it doesn't work out, we can look into the home bound teacher again, but we need to give it a try. Please keep praying that a) the pain doesn't come back; b) the gamma knife completely killed that spot; and c) his cancer never comes back EVER! Thank ya'll so much for your uplifting messages. You don't know what a difference it makes in our daily lives.
Sunday, April 06, 2008
Happiness is the best medicine
I'm almost afraid of jinxing it, but we did have a pretty smooth, calm weekend after our trip to the ER on Saturday morning. Ryan has felt good and eaten lots. He will be hanging out at my mom and dad's tomorrow with his cousin, Nick. I am nervous about leaving him, but hopefully my chemo will go quick enough and I will be back home before too late. The picture is from Saturday night a week ago. Heidi and Will made us very proud at their Perfectly Polished Spring Formal. We watched them dance many dances with other kids, but their smiles were brightest when they danced with each other for the sibling dance. Thanks for checking in on us and please keep praying for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, April 05, 2008
We just want a calm, but fun weekend!
We were back down in the ER this morning. Ryan had bounded into our bed around 7 and was fine until about 8. After sneezing 3x he immediately had severe pain. I have never seen him in such pain. He was telling us to call 911 that his head was going to explode. We waited it out for about 15 or 20 minutes and put a call into Dr. Reissner's office and headed to SR. He calmed down in the car and fell asleep. By the time we got to the ER, he was ok and playing and laughing again. A CT showed no changes, so we headed back home. We are alternating Tylenol and Motrin through the weekend just as preventative. Please pray this will work and we won't have any more excitement. Ryan isn't too excited about laying around being calm. "Great! Just throw me in the fun box!" Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, April 04, 2008
I don't believe there is a happier family around today just to be all under the same roof. Ryan got to come home around lunchtime, but not before a visit from our friend, Buck, from the Lighthouse. Thanks, Buck, for coming by. Yesterday was unbelievably long. It went longer than the gamma team predicted because the meticulous set-up all had to be done by hand. No automation today! Dr. Reissner said everything went incredibly well. They got 100% coverage. Sounds perfect to me! Our ambulance team arrived to pick us up before Ryan ever got to recovery, but was called away before he was ready to go. They called for another ambulance and we didn't have to wait too long for them. It was so nice to get him back to his bed at Scottish Rite, but he wasn't feeling too good. Thank Goodness for drugs for nausea and pain. We are keeping a close eye on him today. He is all smiles now that he is home. Thanks so much for your prayers for Ryan and our family. We will be cooking up his favorite meal tonight and are looking forward to sleeping in our own beds!! Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, April 03, 2008
"Can't we take the chopper?"
Yesterday was a much better day. Ryan had a great visit with Heidi and Will and then he played with his buddy, Dominic, for several hours. They ran around and played like normal. It was so great to watch. He got platelets this morning just to keep the level up nice and high. We had a pretty cool ride over in the CHOA ambulance (10:30 am) and Ryan is still in the Gamma Knife room. He only understands that it is regular radiation-the kind that was so star wars like before. We are not able to update from SR. We can't even pull his website up on the computer. Thanks for your prayers. Keep sending them up, we can really use them right now. We are hoping to hear something soon. Love, Les, Missy, Heidi, Will, and SuperRyanIt's 2:30 and word is "planning" is just about over. The procedure can take 1-2 hours then an hour in post op. We hope to be back to Scottish by 6pm.
Wednesday, April 02, 2008
Ryan said it best when he said "this is the worst spring break ever!" We have been at SR since Sunday morning when he woke up with a 103+ fever. Les brought him down and the fever went away, but he developed a splitting headache. They did a CT on Sunday and some MRIs on Monday and Tuesday. It looks like we are headed to Piedmont for the Gamma Knife tomorrow morning. They will transport the three of us by ambulance there and back and Ryan will spend the night back here at Scottish and should be able to go home on Friday. He has had a terrible time with the steroid they put him on, but they dropped the dosage this morning and hopefully that will help. He only has to be on it a few more days. Heidi and Will are headed down this morning so that should really help things. He had a fantastic surprise yesterday-or should I say prank. Smith came dressed as the Easter Bunny, and that was pretty cool by itself, but when he took the big bunny head off Ryan was so shocked! It was priceless! It was what he really needed, thank you so much Smith. Please keep Ryan in your thoughts and prayers and also for the neuro-surgical team. Love, Les, Missy, Heidi, Will and SuperRyan