- 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, April 30, 2007
Happy little boy...
Ryan was given the Get Outta Jail Card this morning. I wasn't there but I could feel the smile from here! His Grandaddy camped out with him last night and all went well. I hope he didn't think we planned it this way cause loading up all the stuff Missy brings along with the stuff collected over the days, is a big chore! Thanks again Granddaddy. We are all so happy when Ryan's happy. We are praying hard that this won't be the norm over his next 5 rounds of chemo. We have agreed that we will treat him like we did during his stem cell transplants and really watch what he eats and touches, along with plenty of hand washing. Turned out to be a pretty good Monday after all.
Les, Missy, Heidi, Will and SuperRyan
Sunday, April 29, 2007
Ryan and Will have about emptied the game closet here at the hospital. Ryan put a dollar bill on a note on his door for Dr. B. asking to go home and offering more where that came from. He seems to feel great, but Dr. B is afraid that if we go home and they stop the antibiotics, Ryan will be right back in the ER. He still hasn't had any fever and his white count went up to 1.4, but I found out today they are watching a number in his blood that indicates infection. This number is "going down nicely", but with his low white count, we have won another night here at Scottish. Our Lighthouse friends, the Howards, are on their way to visit with him, and that will surely perk him up. His grand-daddy is coming back, too. Will has to go home for soccer tonight and school tomorrow. Thanks for checking in on us. Please keep praying for Ryan and all his friends. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, April 28, 2007
Hanging out at Scottish Rite
Still no fever, which is an awesome thing!! Unfortunately though, still not too much of a white count either. It looks like we are going to be here another day, and may even be lucky to go home tomorrow. :( Les is bringing the kids and my parents down in a little bit and Will is going to stay and spend the night with us. Ryan loves that idea! He has been playing all morning with Kellie, having a great time shooting stretchy frogs and making slime. He got a little bit of a nosebleed, and with his platelets so low, they have started a bag of platelets. We got a call from his buddy Matt's mom this morning, and Matt woke up with the chicken-pox. They drew titres to see if Ryan has any immunity to chicken-pox, but the results won't be back until Monday. We are hoping that him being out of school since Wed. has helped keep him from being exposed. His white count was up a little this morning to 0.9, but his ANC is still not computable. That simply means he doesn't have anything to fight off germs with. So please pray that he won't develop any chicken-pox and that his white count will go up and he can go home. He would love to be back at school on Monday. Love, Les, Missy, Heidi, Will, and SuperRyan
Fever's down, hopefully for good!
Sorry for the delay in posting. Computer troubles! Ryan's last fever was at 6:30 last night. It hit 101.8 again, but hasn't come back. Hopefully, we have seen the last of it. Cross your fingers. He is still getting antibiotics every 4 hrs. His throat hurts and he has a sore place in his nose. The doc is blaming it on the chemo. I don't want him to have that mucositis again. That was so rough before. He did get blood yesterday, and that has made him feel a good bit better. I brought him a big box of goodies from his class and the teachers at our school. He loved hearing from everyone. Thank ya'll so much!! Kellie came by and played for a bit and that really perked him up. We made some slime and watched a scary movie. Both of which really made him happy. We will be hanging out here today hoping his fever doesn't come back. If it does, it will be another day for us. If not, hopefully the docs will let us go sometime this afternoon. Thanks for all your prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, April 26, 2007
Just Can't Catch a Break
Les and Ryan went down early to Scottish Rite for his scan. It was the first time his port was accessed when he was awake. Les said it didn't hurt thanks to the "cold spray" as Ryan calls it, but that he was very anxious about it. They had a while to wait around, but at least now the scan is done. Ryan thought it was pretty cool to see his skeleton. He said he could even tell that he was smiling. :) They got back home around 2, but were only home a couple of hours when they had to turn around and go back. Ryan started running a fever, and then we got a call from Erica with his counts. His white count is 0.5 and hemoglobin is 8.4. He will get blood when it hits 8.0, so he will probably get some tonight or tomorrow. As of now, they are still in the ER waiting to be transferred upstairs. They accessed his port again tonight, and he is getting fluids. We got a call this afternoon from Camp Sunshine that a spot had become available at Family Camp this weekend, and Ryan wants to go so very badly. I just don't know if I can see that happening. His soccer coach brought him some boots for four-wheeling. I can't wait for him to see those. He is going to love them. Thanks, Coach Thomas! Thanks to everyone for your calls, messages, and offers to help us. I wish there were something to do, but all I know we need is prayers. Please pray that Ryan's fever goes away and he can come home. Please pray that the chemo is killing the cancer cells now and forever! Love, Les, Missy, Heidi, Will, and SuperRyan
Les just called and they are in room 322. Ryan's last temp was 102 :(
Wednesday, April 25, 2007
Ryan played his entire soccer game last night. He played hard, too, and then he wanted to hang out at the soccer field and watch Will's team practice. Thanks, Jena, for coming to his game and for taking pictures for me. He woke up this morning feeling ill. He stayed home, and has gradually felt better during the day.
The hospital called this afternoon and had Ryan's nuclear bone scan scheduled for 11:00am tomorrow. We need to arrive at 7:00am for the injection. Hopefully he will feel well enough in the morning to make it through the long scan alright. Once this data is added they will "stage" him. Ryan's original diagnoses had him at a stage 4. I pray he will come in below that. Les, Missy, Heidi, Will and SuperRyan
Sunday, April 22, 2007
Round 1 complete
Ryan finished up round one of his chemo yesterday at the hospital. After playing Gallaga all day Friday, he took it easy yesterday and watched movies with his Dad. He has had a few bouts of nausea, but hasn't really gotten sick. We are managing it with phenergan. He was happy to get rid of the line hanging out of his chest. I'm not sure he even knew when his nurse took it out. Dr. Lew came by and gave Les the news of Ryan's bone marrow aspirates. Initially, he told him the marrows were clear, but came back 15 mins. later to say that it was only clear on one side. We have learned to brace ourselves for any test results, but that was pretty disappointing after thinking they were clear. We will just have to hope and pray that they will be clear after this round of chemo. Many of you have asked about Heidi and Will and how they are doing. They both played soccer yesterday. Heidi is blessed with many girl-friends, and they have been a great support system for her. Will, on the other hand, just would like to be blessed with many girl-friends. :) He is our little "open-book" and doesn't hesitate to let you know what is on his mind. We are trying to keep our routines going. We have always believed that kids do better when they can plan and predict their daily activities. Our routines are comforting and reassuring that we are making it. We had a campfire last night-one of Ryan's favorite things to do. He had a great time with lots of kids and smores! Thanks to everyone that came to play. He will be playing with his buddy, Matt, today, and hopefully be at school tomorrow. Thanks for your many messages, gifts, and offers to help us out. We are really hoping for a near-normal week this week. I am expecting a call to come in for a bone-scan and he will have labs drawn on Thursday to check his counts. We will have his labs done in Athens to avoid another trip to Atlanta. Please keep praying that the chemo is killing the cancer cells, and that Ryan is able to stay out of the hospital. He will have to be admitted for any fevers, and we don't want that. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, April 20, 2007
Ryan will be having Day 4 of chemo today. Considering how bad he felt the last time he had chemo, he is doing awesome. He moves around pretty carefully and slowly. I think his chest is still a little sore from putting in the port. He complains that it is itching. He was able to get a haircut yesterday after we got home. You can tell from the picture of him in his new shades how bad he needed one. We just didn't have the heart to get it cut really short, even though we probably should have. He was happy with it, and does anything else matter? Jena came and loaded a bunch of tunes on his IPod. He will be enjoying that today during his treatment. He is so much more mature as he goes into his treatment this time. He had not understood that it was the chemo that made his hair fall out-not the cancer. Thanks again for all your prayers and kind messages. Please keep praying that this treatment will kill all the cancer cells in Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, April 19, 2007
He is hanging tough.
Chemo Day 3 is about to begin. We are in the clinic for our first chemo here. We had a really good day yesterday in spite of the long night of beeps. With chemo starting at 10:30, the fluids ran another 3 hrs. He was happy to wake up Wed "unplugged". We were whisked off to play games at "Startime" for a few hrs. by our dearest friend (who played hookey from work and we won't name for her own protection) :) She knows how much we love her!! We got fluids started around 2 and was able to leave around 6:30. We did have a major party in our room for several hours. Our friend, Kellie, came by and our favorite nurse, Dawn! She and Ryan sat on his bed raised as high as he could get it to go and spit spit-balls! They laughed and laughed! We rationalized that it was good exercise for his lungs!! It was really nice to get home and sleep in our own beds. We should be out of here today around 2:30. We are hoping to hear something about his marrows, surely by tomorrow. Thank you all for your prayers for Ryan and all of us. We are hanging in there praying hard that these drugs knock him back into NED status. Much love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, April 18, 2007
Chemo finally started
We finally got the chemo running at 10:30 last night. I am really not expecting him to be sick, at least not today. I remember it took a few days for the really sickening drugs to effect him before, and they don't expect him to have much trouble with these two. They will only move the chemo back 4 hours, so we can't start today until 6:30, so I guess we will be camping here another night. We may try and get a day pass today and get out of here for awhile. He won't be hooked up to anything, so it will be tough keeping him entertained. I am going to see if I can get him an appt. to get his hair trimmed. Thanks for all your prayers. Keep 'em coming! :) Much Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, April 17, 2007
One day down...
We arrived at the hospital with Ryan in a fantastic mood. He was laughing and playing and chatting up a storm. He hit the OR right on schedule for his new port and a couple bone marrow aspirates. We had Missy's mom and dad there and a special surprise, Melinda, founder of the Lighthouse, popped in and stayed with us. It was a great chance to catch up with each other. Ryan woke up on the Aflac floor in a little pain and slightly nauseated from the anesthesia. Our partner family from our last Lighthouse trip, the Pecks, also showed up to lift Ryan's spirits. We are waiting to start his first chemo tonight. His blood sugar is elevated so we have been on hold to see if it will come down. Ryan will be checking out of the hospital tomorrow afternoon after his second round. He will then be starting his standard out patient protocol. The very best news of the day was Dr. George confirming no evidence of tumour on the CT scan, awesome! We will schedule a bone scan for sometime next week. It's been a good day considering. We really do appreciate your support, thank you so much. Les, Missy, Heidi, Will and SuperRyan.
Sunday, April 15, 2007
Thank you for the strength you send.
Just wanted you all to know how much better Ryan felt today and yesterday. He was able to go most of each day without pain meds. His "girlfriend" Jena came by Saturday morning and brought him and IPod with a soccer pillow/speaker which will be great during his chemo next week and every week. Thank you so much, Jena. He can't wait to get some tunes on it, and we're counting on your expertise! He got a basket of goodies from our sweet friends at Yargo! Thank you, Miss Pat! He is loving every bit of it. We were able to get Matt on Saturday, and he and Ryan played like there was nothing wrong. They went to see Firehouse Dog today, and just had a great time. Seeing them play made us all feel better. We are planning on being at school tomorrow. I think he is a little anxious, but I really think he will do fine. He needs routine right now. Thank you all for your continued prayers and posts. It gives us strength. I probably won't post again until after Tuesday. Please pray that the port placement goes well and that his marrows are cancer free, and pray that the first day of chemo goes smoothly. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, April 13, 2007
We've got a plan-
We learned a lot today about what to expect. Ryan was so strong and so brave. Everyone should be so proud of him. He woke up this morning in a great deal of pain in his chest and literally begged us to take him to the hospital to get some medicine. I gave him Tylenol and Benedryl and we left about 4 am. He fell asleep in the car and we sat in the parking lot till nearly 8. We met with Drs. Anderson and George, and Dr. Rapkin came by to play with Ryan. They gave him Tylenol with Codeine and it worked fairly quickly. It does wear off and he is uncomfortable for about an hour before he can get more. We were able to schedule his CT scan, but had to wait around until 6 tonight- and he had to be NPO. He was so hungry he ordered a double cheeseburger at Steak and Shake! He will get his port on Tuesday and they will check his bone marrows. I am glad he will get a port. He hated the dressing changes of the double lumen catheter, and this will be so much easier. He won't have tubes on the outside at all and can swim and bathe. If his marrows are clear, they will harvest his stem cells again, which will mean a change in the line, but we will deal with that when it comes. The stem cells will be frozen for use in the MIBG treatment that can follow a successful regimen of chemo. He will be getting Cytoxan, which he has had before, and Topetecan. Each round of chemo will last 5 days and will be done in the clinic-not inpatient-which was great news for us! We had considered moving him to Egleston if the chemo was going to be inpatient. He really doesn't remember much about being inpatient at Scottish Rite, and Dawn and Erika are at Egleston. We have no doubt how much they love Ryan, and he is crazy about them. I think they are angels. He will have chemo every 21 days. The hope is that he will be cancer free after 5 or 6 rounds and then can go to Children's Healthcare at Philadelphia to receive the MIBG treatment. I won't go into that now. It is pretty complicated as you can imagine. Thank ya'll so much for your kind words and support for our family. We are absolutely heart broken, but can only face the future with hope. If we can get him back in remission, maybe the cure will be found. Please, please pray that the chemo will work against Ryan's cancer and get rid of all of it. Ryan's words on the way home tonight were that it was "atomic, evil, infinity horrible news". He is being so strong. I hope the pain doesn't get any worse. Hopefully, starting chemo will get rid of it like it did before. Again, please just pray. Pray that he will feel better, that the chemo will kill all the cancer and not be too rough on him, and that he won't be afraid. Heidi and Will are still taking it all in. I don't like it when they are this quiet, this sad. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, April 12, 2007
During the scan on Wednesday it was quite evident watching the monitor that we would be receiving some terrible news the following day. Those horrible words came today... cancer has once again invaded Ryan's body. It has only been 3 months since his last clear scans, how can it attack so fast and furious? He has been complaining of a sore chest the last few days and we have been labeling the pain with anything we could think of, 4-wheeling, football, trampoline, hoping and praying it could be anything other than the obvious. His chest is hurting so bad that Ryan wants us to call Dr. Anderson tomorrow to see if the scan shows anything...we will not be able to slip anything by him this time. He is too educated in this nightmare that he is forced to live with and just a very smart little boy. So we will bring him back the news tomorrow that a little cancer has returned and we will start the fight once again. We will discuss treatment options and plans in the morning with Drs. Anderson and George. Ryan could be back in the hospital as early as next week. I know this news is going to devastate all of Ryan's new and old friends as it has us, but now is the time to lift up his spirits. So we will push on with a smile on our face and pain in our hearts. We all love Ryan. We will post again when we know the plan. Please pray. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, April 10, 2007
Hope all of ya'll had a very blessed Easter. We had a great day with my family. We got a call yesterday afternoon and Ryan's MIBG injection is scheduled for today at 3 with the scan tomorrow at 3. His CT scan is next Wed. Haven't heard yet on repeating the urine test. His scans were supposed to take place in May, so this is just moving them up a bit. One thing is for sure: we don't have much time to worry about it. Please say big prayers that the rise in his catecholomines is nothing but a fluke. And, if you can throw in one for my nerves that would be great, too! Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, April 05, 2007
Spring Break, Oh Yeah!!
We have had beautiful weather here at the beach. Today is a good bit chillier, but we were ready for a little break. Ryan is off with Will and Dad to buy a prank toy. He loves pulling tricks on all of us! As you can see, we had a big surprise on the beach Sunday morning- a baby alligator. Ryan built a wall in hopes of keeping it from going back in the water. They were waiting for someone to rescue it. Unfortunately, quite a crowd gathered and it went back in the ocean. Thanks for your emails and posts on this site. Your support has gotten us through so many rough days. We are soaking up all the children and really enjoying our time away and together alone, but we are missing Mackie and home. Please continue to pray for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan