- 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, June 29, 2009
Ryan is finally doing a little better this evening. He is back on IV pain, fungal, viral, oesophagio, reflux, seizure, blood and platelets. It looks as though we will continue all of our meds through IV as we will meet with "home health" tomorrow here at Scottish to get it set up. We should be up and running at home no later than Thursday. I have been trying to get Missy on board with the same service for a while. She will discuss it with her Dr. first thing in the morning. This service with allow not only comfort care but treatment care as well! Oral pain medicine quite simply does not work for either of them. The difference between oral and IV is night and day. It is so good to see him feeling better to night, but I know Missy's at home...feeling terrible. We are praying she can get some rest. Les, Missy, Heidi, Will and SuperRyan
PS; Heidi leaves for Ireland, Scotland, Whales, and England tomorrow morning. I hope she has an unforgettable trip.
Sunday, June 28, 2009
Athens to Atlanta
Both Missy and Ryan are in the hospital. Their counts are very low and pain is very high. We are hoping both will be out and home tonight.
Thursday, June 25, 2009
A warm good bye to Vermont.....
This is a frustrated little boy in a grown up world. It is very hard for him to socialize with kids his own age anymore. The majority of his friends are teens and older. This, or any other disease, steals the innocents that is supposed to live in all children long after only 10 years. It breaks my heart to see it, but this is the reality. This gesture is not aimed at any of the wonderful Doctors and nurses that went out of their way to make us as comfortable as possible while in Vermont. Dr. Sholler analysed Ryan's labs daily, making adjustments to his treatment on the fly. She sat with Ryan and really got to know his bad side and he showed her a little of his good. Everyone was so patient with Ryan. This has been the last 5 years of his life. Fighting, winning, losing, sacrificing, enduring. He is maxed...and this is where he is, and it makes me so sad. Ryan has been such a good boy through it all and I desperately hoped that a day would come, where we could sit down, take a deep breath and utter two simple words...we won.
He is getting sick several times a day. The thought of attempting to choke down many many pills makes him sick also. We are thankful for very little pain, as that was our goal with the Vermont study. This has been very successful.
I wish I could say the same for Missy. She is both very very sick and in a great deal of pain. It all just makes your head spin. It is simply unbelievable that this is all not fixable...We are praying for wisdom, compassion, guidance and great strength. Les, Missy, Heidi, Will and SuperRyan
Monday, June 22, 2009
One more day
An uneventful day here. Ryan is doing sooo good with all his meds ! He trys so hard to please me, in which I'm not a big fan of. Heidi and Will...you keep it up though ! His tummy finally went down enough for him to think he could fit a chili-dog in it from Al's French Fry's (a Wade recommendation...you really do need to get into the restaurant biz, Wade...) this place is a Varsity clone. He did get half a dog down, then asked our nurse for some nausea medicine. I am positive none of his antics are endorsed by Dr. Sholler ! We are getting blood tonight, chemo tomorrow and platelets again tomorrow night. Then, fly home to check on mommy :) We are really looking forward to getting on a plane. Not that Ryan hasn't taken a shine to a great staff here, we sure have, but we don't want to overstay our welcome ! One more day...Les, Missy, Heidi, Will and SuperRyan
Sunday, June 21, 2009
As crappy as Ryan's feeling, when a Dr. unhooks him from the pole and says he can get out for a while....that has a different meaning to him than that of the Dr. He immediately made plans to go to Pizza Putt, kinda like Chuck E Cheese but with mini golf ! I wouldn't let him eat (not that he wanted to) but we did have enough time to get in 12 holes :) It was very strenuous on him but he was quite pleased with himself for doing it. He has been asleep ever since we returned. Day three of chemo done and just one more to go. His tummy is still distended but not as tight. He is still doing Morphine and we have started Miralax. We are also running 2 antibiotics just to be on the safe side. Maybe Chili-dogs tomorrow...I'm hoping :-) Les, Missy, Heidi, Will and SuperRyan
Saturday, June 20, 2009
Half way through
Wade called us today to give us the low-down on a Varsity style chili-dog place here in Burlington. The plan was to go there today but he is not feeling well enough to eat. His picture looks like he's packed away a dozen!
But he really just can't expel
the IV fluids as fast as they are going in. It is very painful for him and has been taking Morphine several times a day. We are hoping he is doing better by tomorrow, then
stuff him full of chili-dogs!
He has been having vision problems over the last 3 weeks and I had kinda forgotten about it until Dr. Sholler
asked today. He claimed he had none. Later today I asked again if he was still seeing double at about a 15' distance and he said yes. He just doesn't want any additional treatment so he says he was going to deny it. He also said he wished he could be hooked up to anesthesia
permanently so he couldn't feel pain or worry, then quickly added I'd be hooked up to and we could still talk and do fun stuff...I told him he just described Heaven...Les, Missy, Heidi, Will and SuperRyan
Friday, June 19, 2009
Ryan's has one chemo under his belt. We only told him this morning he was going back on chemo and you can imagine he wasn't too happy. He asked if he would lose his hair again. He is tired of going though that. I said we'll keep our fingers crossed that it comes back straight and blond, just the way he likes it !The biggest issue is that his tummy an ribs are so distended it looks weird. He is having pain with all this pressure. He has taken 2 doses of Lasix, a medicine that strips the body of fluid but we have no apparent reduction in his swelling. We went for a walk around to floor to try to help but it hurt him worse. Not to sure what the night holds but pray this fluid will find its way to the right places. He is taking Morphine still for his "normal" pain. He did eat just 3 spoons of soup and 1 bite of cake today. He said if they sold chili-dogs here in VT, he'd eat a whole one ! ya right. Missy is not doing well at home but continues to be cheerful and encouraging to Ryan and I on the phone. I can't remember if we mentioned my mom flew down from Canada to visit so she has been hanging out and helping around the house while we're up here. Hope she's been working on her tan in the near 100 degree weather there! Just 4 days to go! Les, Missy, Heidi, Will and SuperRyan
Thursday, June 18, 2009
Progress and Progressing
Not a good day for scan reports for Ryan or Missy. Ryan has shown progress in his bone and marrow but he has progressed in his liver, left eye and his resection location in his head. Chemo will start tomorrow and we are desperately praying that it gets to work immediately and takes control of it. His spirits are down and is still not eating. He is starting IV nutrition tonight. We will be in the hospital until Monday night and still on schedule to fly home on Wednesday morning. Good thing cause this fold out chair is going to kill me ! ( not that I'm whining :)Missy got a telephone preliminary report that apparently shows progression also. She is meeting with her Dr. on Monday to get the full run down. I hate that we have to be so far apart when bad news is the only news of the day. Nausea, pain and mental anguish is taking a toll on the strength that she has left. I just can't imagine...Seeking miracles, Les, Missy, Heidi, Will and SuperRyan
Wednesday, June 17, 2009
Perfect Sailing Weather !
Ryan has done a wonderful job today with his team here in Vermont. I think we are breaking him ! Well Dr. Sholler is. He got his blood work done, which didn't look too bad, overall check up, and his nuke med injection. First thing tomorrow he drinks contrast for his combined CT and MIBG scan then on to his bone and marrow aspirates.
Our day ended with a 30' sailboat cruise on Lake Champlain. The wind was good and the weather was warm. Good thing to cause I left Atlanta without a jacket. My friend Smith said I might be able to find one at Burlington?? We had a great time with our new friend Captain Gideon ! Ryan did most of the sailing. There were a lot of sailboats out tonight enjoying the perfect conditions. Hopefully thing will go as smooth tomorrow as they did today. Les, Missy, Heidi, Will and SuperRyan
Day one back in VT.
Who's excited to be back in Vermont ! not this guy...
We got in around 11 and settled into our new digs. We will be here until Friday when we check into Allen Fletcher through Monday. We our on our way to get his check up and an MIBG injection (damn, forgot his SSKI) We are hoping to tour the lake this afternoon on a sail boat. Ryan, " dad, can you even drive a sail boat" dad, "of course I can, how hard can it be" This should be fun if we can get the time to get it done !We're feelin the love, Les Missy, Heidi, Will and SuperRyan
Monday, June 15, 2009
Hangin with the Channel 2 Crew
Smith and Dennis hooked Ryan up with Mark Arum for an awesome tour of the WSB Channel 2 Studios. They were playing with the weather "blue screen", sitting in the anchors chair, visiting 95.5 the Beat, 97.9 the River and B-98.5. We can't forget Bortz ! Up next was a tour of Atlanta in their helicopter. They buzzed buildings, chased the Chattahoochee, a fly by Stone Mountain and hovered over Scottish Rite Hospital. He had a blast !!
The guy's pulled this together to help ease Ryan's stress of heading back to Vermont tomorrow night. We will get in late on Tuesday then meet with Dr. Sholler Wednesday. MIBG Scan, Bone and Marrow aspirates Thursday. Check into the hospital Friday through Monday for chemo, clinic on Tuesday. We will fly home at 7am on Wednesday. It will be a 3 months before we have to head back. We are pretty worried about the chemo side effects as he is feeling sooo bad already and not eating. On top of that, his counts are still extremely low. Wish us lots of luck. Prayers for Ryan and good direction for his doctors. Les, Missy, Heidi, Will and SuperRyan
Monday, June 08, 2009
Foxworthy, not joking around...
One of Ryan's many friends, Jeff Foxworthy steps up for all children who are battling childhood cancer. Just click on his link and scroll down through the various videos.We are also incredibly saddened by the relapse of another good friend. Patrick's family is interviewed in the link above also. We are wishing Patrick a speedy recovery and back into remission as quickly as possible. Thank you to Kristin Connor and her staff at CURE, who keep leading the way and funding the research that is keeping hope alive for the children fighting this brutal disease. Sincerely, Les, Missy, Heidi, Will and SuperRyanPS: Wade, thanks for bringing your butt over yesterday with the family (Boston Butt that is) Wow, you need to partner in a restaurant !! That was the best BBQ and Sauce South of the Mason-Dixon !!
Saturday, June 06, 2009
Never ending battle is exhausting
Happy to be going home...Priceless
Good news, bad news
The CT scan shows the likely culprit of the fever and the stabbing pain, so we are checking out shortly. No real treatment or reason to hang out here. They trust us even though his counts and ANC are in the dumps. Not to sure the path we will be following now. We are emailing the report to Vermont this afternoon. Dr's George and Sholler will discuss next week and let us know any option. So the treatment for now is antibiotics and Morphine. Missy has since checked into Athens Regional. Blood extremely low and likely platelets also. 3 units ordered. She is still very nauseous and in pain. She is in good hands though with her mom.Les, Missy, Heidi, Will and SuperRyan
"I am happiest when our family is together"
The walk down the hall to our room on the Aflac floor is so incredibly hard this time. We pass by Ryan's portrait with the statement he made to the photographer a couple years ago, "I am happiest when our family is together". We strive to make that happen as best we can but it could never be enough. Both Missy and Ryan are so sick and in so much discomfort, no pain. Never ending pain. If you get beat daily, soon it's just an expected occurrence and you push on and that is what they do. Along with that is the mental anguish that weighs more heavily on Missy than anyone of us could imagine. My time divided (unequally I must add) between our family is not fair to Missy. I truly wish I could concentrate solely on her getting better. Heidi and Will have both been shining stars. So helpful, so strong, so independent. We are so lucky to have them to strengthen our family.
Ryan's CT Scan was right on time last night, midnight on the dot. We made it out of ER and to one of these beautiful Aflac rooms by 2am. Ryan is on antibiotics, fluids and Morphine. No official results from the scan yet but first impressions were something going on with his liver. We should have the full report today. If his blood work comes back negative and he doesn't have another fever, we will be working hard to get out of here. If that happens we can resurrect the plans we had for this weekend with our old, near and dear friend Wade and his family coming out to the house. That would be great ! Distraction is good medicine. Keep your fingers crossed ! Les, Missy, Heidi, Will and SuperRyan
Friday, June 05, 2009
Can't stay away
Ryan and I are back in the ER again. His tummy pain has not subsided since beginning a week ago. I got home from work and discovered a 102.5 fever, up to 102.9 once we checked in. We have a lot of contrast to drink before his midnight CT Scan. Missy and Ryan were in the clinic on Wednesday also for the same tummy pain and ended up getting blood and platelets. We are praying for an answer to his discomfort and hopefully a quick fix. For now, Les, Missy, Heidi, Will and SuperRyan
Monday, June 01, 2009
Quick trip to the ER
Ryan has been feeling lots of pain lately but the last couple days he has experienced severe pain in his tummy and chest. He and his dad had a half day trip to the ER at SR. He was dehydrated and got some serious fluids. The ER doc said he was having pain from no food and all the pain meds. I'm glad they came home and he is resting on the couch. He has also been a little confused about things today. Les called Dr. Sholler and she made changes to his meds and said it was to be expected as well as his chest pains. The Nifurtimox can cause his joints to be painful and that is probably the pain he's been in. She was thrilled that his tumor markers in his urine had dropped by 100 points. That was nice to hear. We're gonna work harder on eating and drinking. Please pray for that and for no pain. Love, Les, Missy, Heidi, Will, and SuperRyan