Back to Business

Monday we were back to business. Collin had to go back to Riley for his last round of chemo for this phase of his treatment. We are hoping that he will respond better to this round then the last since he is stronger going into this one. When we arrived at Riley, his weight was checked. He gained 13lbs while he was home!! We are so happy!! He had been on the TPN while home & the appitite stimulant. He ate very well. He was not happy about going back. He is having a hard time understanding if he is feeling so much better, why does he have to back. We explained it to him the best we could. Our concern at this point is preparing him for his bone marrow transplant. So far he has responded well to chemo. We only had a couple of problems with the tummy aches, but found out it was a reaction to an anti-inflammatory medication. That has since been adjusted. He is having a lot of trouble with feeling down. Today he just kept crying that he wanted to go home. Most of it is what he wants, but some of it was he was hurting & wouldn't tell us. I finally asked the nurse to give him some pain meds and quit asking him if he hurts. His normal nurse knows he won't tell the medical staff he hurts. Sometimes he won't tell me. I just can tell by the look on his face. At this age, kids are afraid of what will happen to them if they say they are in pain. Also, they think pain is like crying hurt, not ache hurt too. So, I stay on top of his pain to make sure he stays comfortable & can enjoy himself. Once he got his pain meds, he felt better & was playing with Heath & enjoying himself. Thursday Collin comes home. He will be home about 3 weeks again before he goes to transplant. We had our meeting yesturday with the transplant doctor & Collin's medical team. His bone marrow transplant will start the first or second week of February. I will let you all know as soon as we know. What we do know now is that he will be in the hospital 6 weeks. It could be a little less. It all depends on him. When we go in begin counting days. Day 1 will acctually be day -7, then -6 & so on until we reach day 0. Days -7 thru -4 he will recieve a high powered chemo that will finish off his bone marrow. Days -3 thru -1 will be for rest, then day 0 will be transplant day. Transplant could take a couple of days, but don't forsee that happening. The remaining 5 weeks if for recovery. Baisically, his immune system is being shut down and rebooted. He will have no defense what so ever. He will have to have all of his vaccines since birth repeated. We have been warned that last year, the cancer & stem cell units were put on lock down because of H1N1. No visitors under the age of 18 were allowed. They have told us that as long as Kasey & Zack have had the flu vaccine that included H1N1, they should be ok to visit Collin. During cold & flu season, they don't take any chances with bone marrow transplant kids. Once he is ready to be discharged from Riley, we will be sent to the Ronald McDonald House Apartments. They are at the Ronald McDonald House and are reserved for families of transplant kids. They do not want transplant kids to go home right away. They want them close by in case of an emergency. We will be there 2-3 weeks. Once we are done there, then we can bring Collin home. That is when things get challenging. During the time that Collin is in the hospital we have to get our home ready for him. We have to clean our home top to bottom. Litterally. We have to shampoo our carpets, air ducts cleaned, furniture steam cleaned & everything strubbed. Also, there are precautions that we have to take with Kasey & Zack. We have to stay in communications with their schools. If their is a bug going through their schools, we have to know about it. The docs will put them on a type of preventative anitbiotic. If it is going through their classrooms, they will be put on the preventative antibiotic & kept home. No chances can be taken. The hardest thing is going to be that Collin can not leave the house except for doctor appointments. Physical therapy even has to come to the house. He also can't eat ANY food prepared outside of the home. Everything he eats has to be cooked at home. It is going to be very hard on him. All of these restrictions will be in place for 100 days after transplant. That is why transplant day is day 0. We are going to spend the next couple of week letting him do things to have fun & prepare him for the transplant. It is going to be very difficult for him. The week of January 24th he will have all of his tests & scans redone. If they did it before he started chemo, they are going to do it again. They are also going to do anything that transplant wants done prior to transplant. He is going to have another MRI, CT Scan, MIGB (Scan that picks up the Neuroblastoma tumors), hearing tests, bone marrow biopsey & others. We will then have another meeting with the team of doctors to get all the test results and sign the consents for the transplant. All of the tests will be done outpatient. We will be driving back and forth to Riley most of the week. I don't have the schedule yet, but hope to have it before we go home. That is all I have for now. Thank you to everyone for all of their prayers & support during this difficult time.