Wild Ride

It has been awhile since my last post. It has been crazy at our house.

Collin did great during Round 6 of chemo. He had little side effects until Thursday. He started a low grade fever. I knew his counts dropped. I could see it on his face. He had his blood drawn that day for counts. He gets counts done every Monday and Thursday. Friday morning the doctor's office called wanting us to bring him to Riley right away for a blood and platelets transfusions. He still had the low grade fever. While there, he spiked a fever of 101.7. As fast as it went up, it went back down. Because he went above 101, he had to be admitted as a precaution for infection. I was not very happy about it, but there wasn't a whole lot I could do except make Collin comfortable and console him because he was very upset. He cries when he has to be admitted. We didn't stay very long. He was discharged Sunday. We made it to Kasey's basketball games. He was very worried he would miss her games! He loves watching his older siblings play basketball! As his counts go up he feels better and better. He is starting to lose his hair again. He isn't too worried about it because now he knows it will grow back. He is also having trouble with diarrhea. This will decrease with time. His energy level also is down. Otherwise, he feels great.

This week he is getting a bunch of tests and scans done. Today he had an MRI and bone marrow biopsy done. He was asleep for it. Tomorrow he is having his hearing checked, an ECHO & EKG, an injection for his MIBG (scan that picks up on Neuroblastoma cells) and a blood draw. The blood draw is for transplant. Most of the tests are for oncology to see how he is doing. Friday he is getting a CT & MIBG done. He will be sedated for these. He will also getting some blood drawn & a chest x-ray done. The blood draw & chest x-ray are for transplant. On Monday, he will have a GFR done. It is a test to check his kidneys. He will get an injection. An hour after the injection he has to have his blood drawn. He then has to have another two hours after that. We will also see his oncologist that day too. On Wednesday we have a meeting with the transplant team to get test results and finalize the transplant plan. The doctor will talk to Collin about what will happen in terms he can understand. I will also sign the consents too. We will have more information then.

Right now his admit date for transplant is February 7. That is when the countdown begins. Day is actually day -7. Day -7 thru -4 he will get a high powered chemo that will wipe out any bone marrow & white blood cells he has left. Day -3 thru -1 are for rest. Day 0 is transplant day. The doctor expects the transplant to take about 24 hours. That is the average. It will be painless for Collin. Everything is done through his central line. They will pump the blood out, run it through a machine & then put it back in his body. After that we start counting days. He will be in "isolation" until day 100 post-transplant. He is allowed to have visitors while in the hospital & at home. As long as they are not sick, there won't be a problem. He will NOT be allowed to have live plants, animals and/or fresh fruits and veggies. This is also the case at home. He can have card, toys, balloons (NO LATEX) & other treats sent to him. He will be in the hospital 5 weeks. The doctors have told us to prepare for 6 weeks, but are expecting him only to be in 5 weeks. Once he is discharged from the hospital, we have to go stay at one of the apartments in the Ronald McDonald House. We will be there 2 to 3 weeks. This way, if there is an emergency we are close & he will have a lot of doctor appointments. After that we can bring him home. The transplant team has given Heath and I a list of things that have to be done at home before Collin comes home. We have to scrub everything, shampoo the carpets & steam clean the furniture. They also want us to have our air ducts cleaned! If that is what it takes to help him,that is what we will do. John, my brother, is assisting with finding help for this huge task. Once we do get him home he will not allowed to go anywhere except to the doctor. He can't even go to his physical therapy appointments. They have to come to the house. He can have visitors at home. Same rules apply just like the hospital. He still won't be able to be around live plants, pets & fresh fruits/veggies. Also, all his meals have to be prepared at home. He can not eat anything prepared outside of the home. That is going to be tough for us. If the weather is nice, he can go outside in the yard, but he has to wear a mask. We have to do this until he reaches day 100. Once we reach that day, he will have some tests done and if everything looks good, then he is off the restrictions. He will have to have all of his shots repeated since birth. He isn't going to be very happy about that.

Kasey and Zack are doing well. Kasey is still playing basketball. She has improved a lot this year. Zack's basketball season just started. His first game was tonight. He played very well. Collin and I missed it because he were still in the hospital. We should be able to go to the next one. I am so proud of all of the children with how well they are handling this situation. Once we figured out what we could do to help them, it has gone a lot smoother. We keep Kasey and Zack at our house as much as possible. Heath and I have certain days that I go home and he goes to the hospital. We are working on a schedule for transplant. We will also be getting a regular room at the Ronald McDonald House so they can come stay on weekends and weekdays if need be.

That is all I have for now. We would like to thank everyone for their continued prayers and support. You have all made this difficult time easier. Thank you.