- 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, March 30, 2009
Could It Please Get Better?
I didn't get to update again yesterday with pics of Ryan's hours and hours of work getting ready for his yard sale. He has bagged up all his old toys he's tired of, priced them, and made a sign with his dad and grand-daddy's help. I guess that will be the plan for this weekend. We're starting chemo today a long way from where we should be in the blood count race. We had them checked today and
Platelets are below transfusion level at the get go. We've never ever started this low, but we don't really have a choice. I'm hoping to just take him in to the clinic and get blood and platelets. Please pray that he gets through it without any trouble. Nothing else makes sense. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 29, 2009
Our Dashing Gent!!
The three of us had a good night together. He's even already looking to next year. I am so surprised, but not disappointed. I'm gonna update again today with Ryan's news. I'm thinking it's a garage sale. You won't believe what he's been up to!
Wednesday, March 25, 2009
Our new round one is done.
Our schedule got a little off yesterday when they bumped up my appt at Emory, but my dad came through for us as he always does and took Ryan to see Dr. George. Sounded like the usual upbeat day from just the email we got back from Dr. G. We have been a little concerned with some bumps on Ryan's head just over where he had the Gamma Knife. We had emailed him with our questions, and we all think it is the titanium screws possibly working their way out. We're going to watch it for now, but Ryan was ordering himself a CT scan for this morning (that just happened to fall at the exact time his home-bound teacher would be here, Sorry Mrs. Jill!). His counts are still pretty low so we're going to recheck them on Monday, and probably move ahead as scheduled regardless. Can't give the *&%$#ing NB time to gather strength. Ryan apparently had a conversation about not getting accessed for his chemo, so we're looking into taking it by mouth. I'm gonna put a question out on the list-serv just to see if anybody has any experience with that. Otherwise things around here are rolling on. Will did go to soccer practice on Monday and had a good little work out, but was pretty sore today. I'm worried his heart just isn't it right now. We'll just have to see. Again, day by day! His spring formal for Perfectly Polished is this weekend, and I am just trying to wrap my head around all that that will entail. It will be a little bit easier, just picking up his tux (tails, this year! Won't he look sharp!) and not worrying with Heidi's dress, shoes, hair, makeup, etc. etc.etc.! The kids are out of school on Friday for a workday. Who knows if Heidi will get her driver's license or not this weekend. We've moved her appt. back the last couple of Fridays cause she can't get all the paperwork together and get the class finished. She's had lots of homework, and she doesn't get home till almost 6 everyday after soccer. They had a game Monday night way above Gainesville, but lost. I felt bad for them. They beat Buford Saturday afternoon which was a nice win for them. Anyway, thanks for your thoughts and prayers. Please pray for Ryan's counts to rise. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 22, 2009
A Soccer and Swim Kind of Weekend.
Ryan is doing great. He doesn't slow down too much. He went back to work with Les on Tuesday and they had his counts done at Coach Gary's clinic. He was happy to see Paige. She is so great with him. His hgb was over 9 and wbc over 2, but his platelets were only 15k. He has an appt at the clinic on Tuesday for a recheck. He played golf on Thursday with our friend, Rick. He had a great time and he hasn't stopped talking about it yet. Thanks, Rick!! We took Will to his rec game yesterday. He was able to warm up with the team and he played for just a few minutes, which is a HUGE improvement. We're hoping he'll be able to go back to practice this week with some modifications. Heidi had a game late yesterday afternoon in Gainesville, and her team beat Buford, which was unexpected, at least to me! Ryan's home bound teacher is coming back tomorrow. We have a swim team party today which should be fun for the kids. He still has another week off chemo. Hopefully, it is working. Thanks for your prayers.
Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 15, 2009
The boys are slowly getting better.
Here are couple of shots Dawn sent me from Friday night's St. Baldrick events. Thank you, Derek. He was able to meet his goal and even went over a little bit. I think Dawn said he went over $2700! It's the passion and efforts of people like Derek, and those of you who sent in money, that will help us find a cure. Ryan is feeling better. He had a script for Zofran in the computer at Publix. Will is feeling better, too. He went to school one day last week, but his feet were so swollen when he got home, we had to make him stay home the rest of the week. Hopefully, he'll be back tomorrow. He hasn't thrown up in several days. Les and Ryan went out early yesterday and picked him up some golf clubs. Unfortunately, the rain is going to keep them from hitting some balls today. We have to get counts checked locally either tomorrow or Tuesday. Thanks for your prayers for us. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, March 13, 2009
Can you say "George Costanza"
Ryan came back to the office with me again today. He has spent most of the morning sleeping. I think he likes being able to open his eyes and make sure I'm close by. He slept very sound last night even after sleeping so much yesterday. He is still throwing up, a couple times today so far. Not sure if we'll make it to buy him some golf equipment, maybe tomorrow. I'm waiting on a new windshield to be installed in my truck then we will head home, check on Will and wait for Missy.
She had a good time last night with her friend Diane. She called her Dr. this morning and got the usual "we're not sure" results. They will be scheduling a MRI as soon as they can. What can you do ?? We will all just be happy to have her home. Les, Missy, Heidi, Will and SuperRyan
Thursday, March 12, 2009
Praying for good scan results
Fighting cancer is so very hard. Ryan popped out of bed this morning and followed me out the door to the car. He had planned to come to work with me but he has been feeling so nauseous lately I didn't think he'd be up to it. And he wasn't. He was either sleeping or throwing up at the office and continued at home, even after meds. He wants to go back tomorrow, we'll see. He says he wants to start playing golf ! If he comes back, he wants to hit the sporting goods store to pick up the necessary clubs, bag and golf shirt :) He cracks me up.Will spent the day at the farm and came home looking much better. I believe he may be finally on the road to recovery and could very well be back to school full time next week. His two soccer teams may have to wait a little longer. Missy had a CT scan yesterday and the results will be in in the morning. I'm hoping she will wait to call the Dr. until she gets home. I just have such an uneasy feeling about it. It's making my stomach queasy. I am praying hard tonight for clear, clean results. It has to be agonizing for her. She is attending a conference today and tomorrow on the other side of Atlanta so we expect her home by 5 tomorrow. I hope she's having fun with her friends that went with her. So I will ask all of you to join me in pleading our case to the good lord above to bring us the results Missy and our family needs. I thank you for that. Les, Missy, Heidi, Will and SuperRyan
Sunday, March 08, 2009
This was the scene at our house this morning. Les and Rick assembled Ryan's new fort. He didn't feel much like playing in it. Maybe later this week. We've done three days of chemo and have 2 to go. He was nauseated today and his gums were bleeding. He slept a good bit, too. I think that was from the phenergan. Will took a big turn today, thank Goodness! He went over to my mom and dad's today and ate some noodles. When he came home, he wanted a club sandwich. He ate almost the whole thing and never got sick. He actually hasn't gotten sick at all today or yesterday. We're gonna keep him home from school tomorrow just to give him another day of rest. Well, I'm off to bed. Thanks for checking in on us. Please keep Ryan in your prayers that he handles the chemo well and that it is doing its job. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, March 06, 2009
Ready for the weekend !
Ryan woke up in a good mood this morning. We changed it up and gave him his new chemo at night. We needed to start treatment asap. I waited till he was asleep to start but as soon as I touched his line, his eyes popped open. He is sooo agreeable and does what we need him to do without a single objection. It's truly amazing. Will is not any better. Even with strong anti nausea medicine, he is still getting sick several times a day. I am giving it until Monday then taking him to Scottish Rite if there is no significant improvement. It is all a little overwhelming at times. Just trying to keep it all going as normal as possible and keep praying hard for our 3 fighters ! Les, Missy, Heidi, Will and SuperRyan
Thursday, March 05, 2009
Ryan's better; Will, not so much
Temodar down, and irinotecan running. I'm trying to stay awake another 40 minutes to flush his line. He's very worried he's going to be sick. He was much better today. Great, in fact! The pain patch is working great. There hasn't been much change in Will. He woke up getting sick this morning. I gave him one of his Zofrans and he took a nap, but woke up still being sick. I'm not sure why it didn't work so well today. We're just working on keeping him hydrated. We're really hoping Will is gonna turn a corner here in a day or two. Tomorrow is day 8. Thanks for checking in on us and thanks for your prayers for us. Love, Les, Missy, Heidi,Will, and SuperRyan
Wednesday, March 04, 2009
Day 2, ABT over!
Poor Ryan started throwing up last night-from the anesthesia, I'm sure- and woke up throwing up this morning. He couldn't keep water down and got sick just thinking about taking nausea meds. I called Egleston and we went down for IV zofran and red blood. Hopefully, the nausea won't return, but now we've got zofran that melts on your tongue, if we need it. The bad news today is that Ryan bone marrow aspirates came back positive and ABT-751 won't take care of that. Les talked to Dr. George and the plan is to start Irinotecan and Temodar at home tomorrow. He responded well to these drugs before so we're hopeful they will knock it back down. They will do 2 rounds and then re-scan. Please, please pray this works. Ryan was so upset today when I told him we had to leave his port accessed. He doesn't understand why and we're going to have to tell him that his cancer is back again. We were really hoping that with ABT-751 being all oral, we could get by with just telling him this was his new pain medicine. That's not gonna work now. He did get a pain patch yesterday which is working good. He actually asked Dr. Katzenstein if it was something he had seen on TV and was just trying out on him. Where does he get that?? We were so glad that Dawn was there today. She came and visited him a couple times and I know that made him feel better. Will went with us so we could do some of his school work. The zofran we got for him worked good and he actually ate some lunch and dinner! He's still having a hard time getting around and has pain in his arms, hands, legs, and feet. Hopefully, we are another day closer to the end of HSP! Thanks so much for your prayers for all of us. Hugs to all of you! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, March 03, 2009
Day one ABT study
Long day at Egleston. We arrived early for labs, meeting with Dr's, echo-cardio and CT Scans. The plan was to get this out of the way and start chemo on Thursday. The first day of ABT-751 will take all day. The problem was, the blood came back low. Lower than expected. The study requires only 25K platelets to begin and Ryan came in today at only 18K. Normal range is 175K - 400K. After Ryan's CT, we went back over to the clinic to draw a little more blood and keep our fingers crossed that he made 7K more during our stay there ! We are still scheduled for all day Thursday but we may be getting blood and platelets instead of Chemo. If that is the case, Chemo will be pushed back to next week. Not what we wanted. Missy took Will back to the Dr. this afternoon because he has been getting sick everyday. It is just part of the process of working though it. I think he looks a little better. Thank you for sending all of the notes and prayers to our family. Les, Missy, Heidi, Will and SuperRyan
Monday, March 02, 2009
More Snow Pics
I think we got the most snow (6-7 inches of real snow, not ice)I've ever seen here. The kids loved it. We lost power around 6:00 last night, but somewhere around 11:00 the overhead light came on and woke me up. It never got really cold in the house, just really dark.
We had a great visit at Egleston today. Dr. Katzenstein is always so nice and is just great with Ryan. He told us about several studies going on now and we all agreed that ABT-751 is the way we want to go. They will scan after every other round so I'm glad we'll be keeping a close eye on him. He is having bone marrows, an ECHO, and a CT tomorrow and will be able to start on Thursday. He's having significantly more pain today. I had promised him a stop at Toys R Us last week after his MIBG, but with the lateness of the hour we skipped it. I hated to leave Will as he started throwing up today, but Ryan really needed a distraction, and God willing, Will will be better soon. The distraction worked for about an hour. We picked up a play house that we really don't even know he can stand up in. He envisions hiding inside it and shooting Will with his paintball or airsoft gun through the window. That, I would love to see! I feel just so terrible for Will. He is having a hard time managing this illness. His stomach hurts, his arms hurt, his back hurts. He was supposed to go back to the dr. today, but their office was closed due to the snow. Hopefully, he'll see him tomorrow and he can provide some relief for his tummy. I hate feeling so helpless. Please pray that Will's discomfort will subside quickly and he will be back to his old self again very soon, and please pray that Ryan will be able to get the ABT-751, that it will destroy his disease, and that his marrows will hold up. Thank ya'll so very much for your prayers, love, and support. Wer'e so glad ya'll are on this journey with us. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 01, 2009
Come On Snow!
OK, don't laugh, but I just have to say that we are not usually the sick crowd. I can't get over how your life can change so quickly. I just don't want to get used to it and I don't want my kids to look back someday and think we were always sick. Will seems to be feeling better. We gave him some of our prescription nausea meds last night and that seemed to help his stomach pains. We're just trying to keep nausea and pain meds in him. He actually thinks he's been empathetic to Ryan all these years. Maybe this will help him see otherwise! The swelling in his right ankle has diminished greatly, but his arms are hurting now. No pain in his joints, just the muscles. The rash is a good deal lighter and hasn't spread anymore. It's hard to keep him with his feet up.
The kids are watching for snow. I hope we get some for them to play in, but I don't need anymore clothes to wash!
Les and I are trying to make some decisions about Ryan going to school, but I think we may have to wait till after our meeting tomorrow at Egleston. We'll have to see what sort of side effects he'll have from chemo, if he can even get it. Our friend, Katie aka Pinkey came and stayed with Ryan on Friday. He had a great time, as he always does with her! Thank you so much, Katie! We love you!
Next Friday is St. Baldricks. We are looking forward to it. If you'd like to donate to Derek scroll down a few updates and there is a link directly to his page. He is a little over halfway to his goal. We are so thankful to him and many others who are shaving their heads for childhood cancer.
That's it for today. Have an awesome Sunday and please pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan