So, what has happened so far...Yesterday July 20, 2009 We met with his hematologist and he set us up to have Kyler's HLA typing done and then we went to meet the stem cell doctor. In ways we had been hoping that he wouldnt have to have a BMT right now but when the doctor told us that there was no way he would grow out of it and as time went on it would only get worse we decided that it was definately better to do it now. So they went ahead and put him on the donor list for both a person donor and for a cord blood donor.
So here is about what we can expect at this point... Right now we are waiting on a donor. If they find a cord blood donor the process could go a lot faster, but if they find a person donor they will have to contact the person to make sure they still want to donate, then have them have their blood work and HLA done again to make sure they are a perfect match then they will do the donation and it will be sent here. When that happens they will call us and Kyler, me and Coty will move into the hospital. For the first two weeks they will do some VERY strong rounds of Chemo to wipe out all of his cells his immune system etc. Me and Coty were told that we will be able to switch places or we can both be there all the time but no one else will be able to come see him and of course if either one of us is sick we wont be able to see him either. Okay, so after the chemo is done they will give him the donor marrow or stem cells. We will be in the hospital around 4 to 6 weeks and if he is doing well then they will let us come home since we only live 30 minutes away. They will start out seeing him every day and eventually once he is past the chance of infections or complications they will taper off visits until its down to once a year.
With that said..even though I hate to even think about this I have to be honest with everyone. There Are risks with having this done. First of all the chemo is going to destroy his immune system which makes him much more likely to contract an infection. There is also the chance that his body could reject the donor marrow or the donor marrow could reject his body. The best match would have been a sibling but since he is our first baby the next best match is an unrelated perfect match. The family would be next to last and me and coty would be very last to even be considered. Also, there are risks of infection during the whole process because of tubes etc that he will have in him. ALL of his cells have to be dead or they could come back and pretty much take over the donor marrow and he will still have the same problems, that is why the chemo must be so strong.
For anyone who may be wondering why we still decided to go ahead with the BMT... First of all We love our baby with all of our hearts. He is our whole world and even though we will have to see him go through this, and yes it is going to be a very long difficult process, it is by far the best choice for him. Heres is what could happen if we didnt have the BMT done...first let me mention that even a healthy childs immune system gets weaker as they get older, so you can imagine how an already sick baby's immune system will be as they get older. He could be fine for months or even a year but he will get worse as he gets older. There is a chance that when he starts crawling, if he doesnt have the BMT, he could bump his head and cause his brain to bleed. IF he was fine until he started school he could catch a cold from another child and end up in the hospital. He would never be able to do things healthy children do like play outside or play ball or be around groups of people. Although I know this is hard to hear, because it broke my heart to even think about there is also the chance that if we dont go ahead with the BMT he could develope cancer. The risks of not having the BMT are much higher than having it which is why me and Coty decided to go ahead with the process. I have no doubt in my mind that he will do WONDERFUL!! He is the strongest little boy both physically and health wise that I have ever known. When he was born they expected him to have to be in the NICU and on breathing machines but he faught his way through it and was in our room in an hour. He has Coty's strength and my stubborness :) and with that combination I know he'll be okay. PLUS...I forgot to mention and this is VERY important, the doctor even mentioned how healthy he seemed compared to most WAS babies, so she is hoping that since he is so healthy other than the WAS that the process may be a little easier for him.
Well he is waking up crying for mum mum so I will update you all later!