This week is information overload already. Daniel is already showing to be a champ and his patience kind of freaks me out. He and I were all day in appointments at the clinic for the past two days, being introduced to the new side of things. The Bone Marrow Transplant World. Even though the surroundings pretty much look the same and the staff is fairly familiar because we have been long term patients already there really are some big difference. Some may seem subtle, however others are rather staggering. We will now have our own very sterile BMT room in the clinic that is our very own in and out. No shared germs for us now. Closed doors. Special rooms. Special masks. Special water, special food. I already don’t like feeling so special. Daniel and I agree we absolutely love Dr. Craddock. He will lead our new journey into this transplant world. It is all very strange and complicated but he is so thorough and has such a great way of explaining things. Daniel really feels comfortable with him and so do I. The Bone Marrow Transplant team is a much smaller group of doctors than Oncology and we will know them so much better. They don’t switch as much on a weekly basis and on weekends and have all the residents and fellows as we have seen so far. Dare I say it will be more homey. Ugh. We have learned more rules and restrictions in the past two Days than I would like to know but yet it all seems to roll of Daniels back. Today we also became part of a nationwide research study that may help the way they study Leukemia in the future. It won’t really change anything for Daniel or his treatment but they have selected 150 cases going into transplant and Daniel has been selected as #150. See SPECIAL. The study basically will track his bone marrow over his next three biopsies for trace cells of residual cancer cells and how they are read with special lasers at such a high level of accuracy that it will be able to reevaluate the efficacy of treatment for future transplant purposes. Daniel thought that was pretty neat. We left todays preliminary checkup with Dr Craddock with very few questions since he explains things so well and so thoroughly.
Meanwhile, as all this was going on it is Matthew’s 16th birthday today and he also luckily had the day off school so Rob went with him and he was getting his driver’s license and I could hardly contain myself for his excitement. Even though all my energy and attention is focused on Daniel, inside I was bursting with happiness for Matthew. Matthew has wanted to drive since he could walk basically so this is a momentous day for him.
After our checkup with Dr. Craddock Daniel had another Bone Marrow biopsy procedure and Lumbar Puncture with InterCranial Chemotherapy. Sounds scary and although it is, this time I think Matthew getting his driver’ license was WAAAAY scarier. After all this is Daniel’s 3rd or is it 4th on of these. He does great with them. In fact after the anesthesiologist came in and finished the mandatory football discussion and they finally took him to the procedure room they actually…wait for it…..let Daniel put himself to sleep. Yep you read that correctly. If I hadn’t watched and videotaped it myself I would not have believed it. He pushed his own propofol. I am sure there are rules and regulations against this but how many of us can say we put ourselves to sleep for surgery. CRAZZZZINESS. Anyway he woke up quicker and easier than usual and actually much nicer. Most of the time it is with a potty mouth like a drunken sailor. This time it was just pretty funny and as always entertaining. He quickly asked for Matthew and Matthew was calling checking in from the car (on Bluetooth of course) asking if he could drive over donuts for Daniel. Awww, can you feel the love, and any excuse to drive around? Well we were out of the hospital fairly quickly after waking up and when we got home big brother took little brother for birthday icecream together ALONE. Now that is a strange feeling. Daniel came home pretty excited saying Matthew did a great job and is a way better driver than me and he had a lot of fun. It was really nice to see them together and I hope this brings them closer together while we are home for another week and a half. After we are back in the hospital, Matthew having his license should help our schedule tremendously but now sure what it will do for my stress level. I said that this just took our parenting to a whole new level. It really is as scary as people described. Tonight he ventures out on his own in the dark. I so not forsee a whole lot of sleep in the near future. It really is a whole new world on many different levels starting now.
Meanwhile, as all this was going on it is Matthew’s 16th birthday today and he also luckily had the day off school so Rob went with him and he was getting his driver’s license and I could hardly contain myself for his excitement. Even though all my energy and attention is focused on Daniel, inside I was bursting with happiness for Matthew. Matthew has wanted to drive since he could walk basically so this is a momentous day for him.
After our checkup with Dr. Craddock Daniel had another Bone Marrow biopsy procedure and Lumbar Puncture with InterCranial Chemotherapy. Sounds scary and although it is, this time I think Matthew getting his driver’ license was WAAAAY scarier. After all this is Daniel’s 3rd or is it 4th on of these. He does great with them. In fact after the anesthesiologist came in and finished the mandatory football discussion and they finally took him to the procedure room they actually…wait for it…..let Daniel put himself to sleep. Yep you read that correctly. If I hadn’t watched and videotaped it myself I would not have believed it. He pushed his own propofol. I am sure there are rules and regulations against this but how many of us can say we put ourselves to sleep for surgery. CRAZZZZINESS. Anyway he woke up quicker and easier than usual and actually much nicer. Most of the time it is with a potty mouth like a drunken sailor. This time it was just pretty funny and as always entertaining. He quickly asked for Matthew and Matthew was calling checking in from the car (on Bluetooth of course) asking if he could drive over donuts for Daniel. Awww, can you feel the love, and any excuse to drive around? Well we were out of the hospital fairly quickly after waking up and when we got home big brother took little brother for birthday icecream together ALONE. Now that is a strange feeling. Daniel came home pretty excited saying Matthew did a great job and is a way better driver than me and he had a lot of fun. It was really nice to see them together and I hope this brings them closer together while we are home for another week and a half. After we are back in the hospital, Matthew having his license should help our schedule tremendously but now sure what it will do for my stress level. I said that this just took our parenting to a whole new level. It really is as scary as people described. Tonight he ventures out on his own in the dark. I so not forsee a whole lot of sleep in the near future. It really is a whole new world on many different levels starting now.