- 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, May 30, 2009
Prayers for less pain please.
I am so glad to see Saturday come. Ryan and I are home until he feels like going to watch the kids swim-if he does. He is back asleep, but that is probably due to the new appetite stimulant we've just started. I took him to the clinic on Thursday and he weighed 41 pounds. He got blood and platelets. Yesterday was field day at his school and it was very hard to watch all his friends running around playing and know he wasn't able. School doesn't get out until this Friday. It has gone on way too long. Ryan started complaining of pain in his chest yesterday when he swallows. If this continues through the weekend, we'll be contacting Dr. Sholler on Monday. Please pray for his pain to improve. We're going to try and distract him today with the museum movie. He has been talking about going to see that, but he wants all of us to go. And so we will! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, May 26, 2009
19 years !!
Today marks our 19th Wedding Anniversary. We will likely do something simple as Missy is feeling pretty bad. Ryan has also taken a turn. He have been off of pain medication since Vermont but he started having leg pain again on Sunday and it has steadily gotten worse. He had to start taking Morphine yesterday. He did say that no matter how bad it gets, he will not do Fentynal !
We had a good long weekend.
Jimmy and Frankie flew back Vegas Saturday morning after a week long visit. We got a lot of yard work done. We were invited to Smith's
families lake house for an awesome day on the lake, a
great fish fry with some great friends !! We are scheduled to go back to Vermont on the 16th, for 10 days (oh no) we are going to take Will along to help keep Ryan from going crazy. Ryan still insists that he is not goings and hopes that Will and I have a good time. This week we are praying for a major
reduction in both of their pain, please help us out with that. Lot's of love, Les, Missy, Heidi, Will and SuperRyan
Saturday, May 23, 2009
Loving life at home.
Ryan and Les made it home yesterday around 5ish. He was able to get his blood and platelets and take care of the planned office visit from the comfort of the Aflac floor. He got a couple of stitches to close up his forehead. He said this morning he got the best night's sleep last night in his own bed. Thanks to Smith and Julie for coming down to the hospital and then coming out to the house and making our dinner. We're looking forward to another visit at the lake tomorrow. We had Ryan's favorite- a bonfire, last night. Thanks to the Vickery's, the Stapleton's, and Karen and Jackson for coming out to hang around the old campfire. It was like old times, almost. Thanks to so many for your prayers for the guys, too. Ryan is feeling so much better! Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, May 22, 2009
Ryan was quite a mess by the time we made it down to Scottish. There was blood all through his hair and face. His shirt was soaked. All of that from a tiny cut taking two stitches to close. The best news was that the CT scan was clear for any bleeding on his brain. We will be getting platelets first then a couple units of blood as he was down in the 4's for hemoglobin.
We are certainly hoping that this will not become a standard reaction to this treatment. We are hoping to be out tomorrow. Les, Missy, Heidi, Will and SuperRyan
Thursday, May 21, 2009
Headed to Scottish Rite
Ryan had a pretty listless day. I'm sure his hemoglobin is low, but he has an appt. tomorrow at the clinic. I'm surprised his mouth hasn't been bleeding. That is our usual sign that he needs platelets. Anyway, I'm updating tonight to ask for prayers for Ryan and Les. For safe travels to SR, they've been gone about 20 minutes, for Ryan's head to stop bleeding, and for him to sleep quietly all night, and hey, throw one in for Les' nerves. He wouldn't let me go with him. We both knew I needed to stay here with Heidi and Will. They were traumatized seeing him have a seizure, and then there was a lot of blood. I know this update doesn't make any sense. It's all over the place. Ryan didn't sleep hardly at all last night, and Les went and laid down with him in his bed. Les had been back in the living room about 15 mins when we heard a loud noise. Will was the first one to him and he was in the floor, blood on his head, having a seizure. We all went him and talked him through it and got cold, wet cloths for his head. We couldn't get it to stop after about 15 minutes so Les put him in the car and took him down. I hope that explains our prayer request tonight. This is one side effect of the Nifurtimox. I'll update when I get more information. Thank ya'll so much your love and prayers for Ryan and Les. We love ya'll. Les, Missy, Heidi, Will, and Ryan PS I've been wanting to update to thank my friend Carla, and her neighbor and friend who owns Franklin Gun Shop. She came by earlier this week with a cap, a t-shirt, and a few air-soft/b-b guns. Thank ya'll so very much!!!
Friday, May 15, 2009
One out of the Hospital, one in....
Missy spent last night in the hospital after having some blood work done and realizing her hemo was extremely low. They are finishing up her 3 units of blood and she should be checking out later this afternoon. She needs an energy boost as I will be in Columbus Ga with Will at the state soccer tournament Saturday and Sunday. Tonight we are headed to our county's Relay For Life event. Ryan is not selling Lemonade this year but he will be spending some cold hard cash with Heidi and Will ! They always have a good time with all their friends at Relay.We had Ryan's weekly check-up at Scottish this morning. He is doing very well. Stephanie hooked him up with a "to-go" care package of a 5/8" x 22 port needle, Ryan's "special" port dressing, and hot packs, so when I convince him he has to go back to Vermont, we'll be ready! Thanks Steph! He was sure happy to see Dr. George also. Here's praying for an uneventful weekend (except for our team winning state!) Les, Missy, Heidi, Will and SuperRyan
Wednesday, May 13, 2009
Detox is a terrible, terrible process
Ryan has been off of the Fentanyl and Morphine since Saturday. On Monday he started feeling slight effects of being off of the 24/7 pain killers. But yesterday the side effects really set in. Every 45min to an hour, he falls into an absolute pit of darkness for about 15min. He seems to for get who is and exactly where he's at. He becomes extremely emotional, sobbing and wanting us all to hold him at the same time. His balance disappears. He did not go to sleep at all Monday night but he did sleep a straight 5 hours last night. We are praying desperately that this torment that is tearing at his mind will begin to subside as soon as possible. It is heart breaking to watch. He gets so scared. He knows when it's just about to start and then falls over the edge and into a completely different state on mind.But on the positive side...I just can't believe how quickly we were able to eliminate the pain medicine after starting the Nifurtimox. He has had no sign of the pain that was virtually disabling just last week ! It is just amazing. We will keep him on this program and slowly convince him he has to return to Vermont in a few weeks. Once he is feeling better, that shouldn't be too difficult. Please keep Ryan and Missy in your thoughts and prayers. Sincerely, Les, Missy, Heidi, Will and SuperRyan
Monday, May 11, 2009
All smiles this afternoon
We had a slight scare with the platelets this morning. Even after a full compliment of premeds, about half way through the bag, Ryan sat up and said he tasted something in his throat, then something in his chest. The nurses came in and gave him another dose of Benadryl and steroid. His lip end eyelid started to blister and they gave him a shot in the arm of Epinephrine. That got him back to normal. He is so laid back when all the action is happening. I think its good calm nurses and PA's ! Another blood test then a bag of blood and a pep talk to Ryan from Dr. Sholler about coming back in 6 weeks (which Ryan wasn't buying) and we were out of the hospital by 4:15 ! He was all smiles at 4:16 ! On the suggestion of our nurse, we headed to Pizza Putt to celebrate. It's a place where you eat crappy pizza and dump tons of money into video games - HE LOVED IT :-D
We just got back and have to get ready to leave here no later than 5:45am. We get into Atlanta at 9:30. Will and Heidi are also coming down to pick us up at the airport. That makes us even happier. Next update will be from the ATL. Thanks again for cheering us on up here in VT.
Les, Missy, Heidi, Will and SuperRyan
Sunday, May 10, 2009
Happy Mothers Day !
Ryan called Missy first thing this morning to wish her a Happy Mothers Day. He really misses her. Just 2 more days !We were getting ready to head out for breakfast when Ryan caught a glimpse of all his pills lined up as usual and burst into tears. He told me his life is crappy, it's all hospitals and pills. He has been fighting this for half his life. He feels shaky inside, anxious. So we rocked and talked for a while, tears still streaming down his cheeks. Then I realized that his 3 day Fentanyl is out and he is in withdrawals ! It has happened once before. We decided not to put a new one on and try to stay busy to hopefully keep his mind off of it. I already see a noticeable dip in his leg pain ! If we can stay off the Fentanyl, the next step is to eliminate the Morphine. That would be awesome. Narcotics quite simply change a persons character. I think the Nifurtimox is somewhat similar (neurologically) but at the moment it just feels to me, and Ryan, we're piling on the meds. We just want to see him happy and healthy once again. With God's good grace along with caring Doctors with new medicine, we might just get there. That will be a great day. So hears to mothers (and fathers) who are fortunate enough to have been given the responsibility to look after the most precious gift we have been given. Happy Mothers Day. Les, Missy, Heidi, Will and SuperRyan
Saturday, May 09, 2009
Saturday, in Vermont, I think it was the 4th of July...
A little something for Rick. A stormy Saturday has us laying low and keeping updated on Will's soccer tournament. They are 1 and 1. Ryan and I went to see the new Star Trek movie this afternoon. He really got a kick out of seeing a bunch of Trekkie's all dressed up there !
I do need to clarify on the scans I referred to yesterday. I was shown scans from an unknown patient. Their original upon entering the study and then a scan from 3 months later. There was a huge change in the amount of bone and marrow disease. Those scans were not Ryan's. Wish they were!!! Maybe we can be that fortunate.
We are headed out for dinner shortly. We have sure been missing our birthday girl and Heidi and Will. We did send them the birthday song via recording and got a good description of the inside of the ice cream cake we left for the kids to surprise her along with her present. Happy birthday Missy, I know this has certainly not be one of your best (well, since you met me at least...) but we will make up 1000 fold next year, promise! Well back to keeping Ryan busy and his mind off of being here. We are headed out for dinner. Thanks for all your well wishes to all of us. Les, Missy, Heidi, Will and SuperRyan
Friday, May 08, 2009
At home, Ryan can't stand a new piece of furniture or a new picture or any change for that matter! So dealing with a new hospital and new nurses, physicians assistance, doctors, researchers, child life specialist and a myriad of other new things, puts him in a very defensive/angry mood. I hate that these new doctors can't see the awesome Ryan we all know. I'm afraid they won't either. It didn't happen in NY. After we leave the Hospital though, he is all Ryan. We can't wait to be catching the 7am flight out of here and headed home on Tuesday. I'm trying to get Ryan to eat but all his pain medicine is subduing it. We are hoping that once this Nifurtimox builds up in his system, the pain medicine will be reduced, then eliminated. I did get to see some before and after scans that show just how effective this new treatment is. We are very excited !! Will keep you posted and thanks for all your prayers, Les Missy, Heidi, Will and SuperRyan
Thursday, May 07, 2009
1st update from Vermont
Ryan should be waking up from his bone marrow aspirates now. They are done for the day. He got platelets this morning and had an MIBG - CT combination scan around noon. Today should be their hardest day. Tomorrow he should start the Nirfurtimox. I think it's a pill 3x a day. They have to take a cab from the Ronald McDonald house and have to wait a while for it to pick them up. It's kind of a pain. Ryan loved hailing cabs in NY. Please pray tonight for Ryan to eat and drink more and for him to have an easier time T-Teeing. The narcotics will definitely slow you down. That has been something of a challenge today. And please pray for Les' strength. I know this is very wearing on him. I talked to him just a bit ago and he hadn't eaten anything all day. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, May 04, 2009
Quote of the day !!!
One of Missy's friends shot us an email this morning. This is a good sign !"I was a bit skeptical in January b/c Jack had a lot of disease at that point, but the Nifurtimox in conjunction w/ chemo has almost cleared him completely and he is pain free and off all pain meds!"
We are praying that we have similar results with Ryan, please join us.
Les, Missy, Heidi, Will and SuperRyan
Saturday, May 02, 2009
Headed to Vermont !
We will know on Monday if we can begin a phase 2 trial in Vermont on Wednesday that utilizes Nifurtimox with a couple of chemo agents that Ryan has had in the past. Nifurtimox has been shown to lessen the side effects of chemo while at the same time enhance its effectiveness. The reason Ryan is eligible is that he has extensive neuroblastoma in his marrow and skeletal. (eligibility requirement #5). This Wednesday, he will do a MIBG/CT scan and bone marrow aspirates to verify. The study has us in Vermont Wednesdays though Sundays every 3-5 weeks for 5 treatments. Their will be no adverse side effects to this treatment so at worst, this will greatly lessen his pain, at best, it's possible to clear him once again. I have explained that these trips are to help replace the pain killers he is on, 24/7. Morphine, Fentanyl and Trilisate. All individually are for moderate to severe pain. He is on all three at the same time. I hate it.Ryan had his garage sale today. He has been working on it for a month. You can see him washing Will's bike to get it ready for sale. He was raising money to get more airsoft weaponry for himself and Will. I offered to buy it all many times but he absolutely refuses. He wanted to make the money himself. He had many friends come by and pay prices that are not normally seen at your typical garage sale, if you know what I mean!! I will post a couple pics later. Thanks to Pat and Steve for your generous help! Ms. Wheeler, Gloria, Ryan's good buddy Matt and his family, Rick and Barre, Pat, Jill, Carla for making him very happy for all the effort he has put into it, all by himself. The other picture is of Will, and his entourage last night at the eighth grade dance. Seriously, he will really with Morgan. They had a great time. Thank you all again, and pray for great results in Vermont. Les, Missy, Heidi, Will and SuperRyan
YARD SALE TODAY! YA'LL COME!