So far we havent heard anything about a donor, but we didnt expect to this early anyways. I dont know if I mentioned this before but there is a chance that I am the carrier of WAS. If I am then I really probably shouldnt have any more children because there is a 50 % chance they would also have it. If we had a little girl she wouldnt have the disease but she would also be a carrier. If we have another boy and he has it we would have to go through the same thing again. I am actually going to the doctor monday to be tested to see if I was the carrier. I wont have the results for a few weeks though, but no rush because we definately arent planning on any more babies in the near future.
More Kyler news: Everything is pretty much the same...the rash hasnt really gotten better or worse but he has gotten a little better about taking his baths. He still hasnt had one of his fits in a while which is a big plus. OH!! and he has now moved up to drinking about 7 oz at a time instead of 4-6. This is a good thing because I want him to stay as healthy and chunky as possible until we find a donor. He is also getting better at sucking just his thumb rather than trying to stick his whole hand in his mouth. Its soo cute..I keep trying to get a picture for everyone to see. When he gets ready for a nap or bed one arm goes behind his head (just like he slept in my belly) and the thumb on the other hand goes in his mouth. He does something adorable every day :)
Friday, July 24, 2009
Tuesday, July 21, 2009
Our first Stem Cell Doc Appointment.
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!
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!
Saturday, July 18, 2009
Our Happy Little Boy!
Okay, so this has nothing to do with Kyler's treatment but it is just something I wanted to mention. He has been in such a GREAT mood the last 3 days and its been a week since his last episode where he just screams and cries because he is hurting from the rash and his tummy problems. He has been laughing and playing and it makes me so happy to see him smile!! :)
Friday, July 17, 2009
This is Kyler in his Bumbo seat. (far left) Then in the middle is him raising up.He already tries to push up on his knees. He has been lifting his head since the day he was born and it didnt take very long for him to hold it up on his on. On the far right is him relaxing with his daddy. They watch hunting together all the time and Kyler LOVES to just sit and stare at his daddy's deer head that hangs on the wall.
Some pics of Kyler
He is the sweetest baby! Hes giving me kisses!!
He use to LOVE his bath and loved playing with the towel even more. Now, though, he has developed a rash on his belly chest and back (related to wiskott aldrich) and he hates his bath. Im sure that it stings the rash. He also cries when I have to put vaseline and lotion on him. It makes me want to cry with him. I wish I could through all of this for him.
July 17 2009--From the Beginning
Hi! My name is Jill and my Fiance Coty and I have a perfect beautiful 3 month old little boy Kyler. He is our whole world. I decided to create a blog so that any one who wanted to be updated on how he is doing and see new pictures of him and how big he has gotten would be able to. Since we found out he possibly had wiskott aldrich syndrome we have pretty much kept him away from people other than immediate family, and today we found out he has it for sure so he will definately be on lock down. I have joked since he was born and said I needed to make him a bubble to put him in and now more than ever I wish I could.
Anyways..now the story of Kyler and how we found out about Wiskott Aldrich. I was induced on Kyler's due date and I had a pretty tough time delivering him. He became a little stressed while in the birth canal and was stuck there for quite some time. When he was born he weighed 7 lbs 11 oz and was 18 and 1/2 inches long. He was severely bruised from the back of his head all the way up to his eyes. Vessels in his eyes were also busted and caused blood spots on his eyes and he also had petechia on his back. The doctors and pediatricians all thought it was because he had such a rough time being delivered and because he was in the canal for so long. When he was 4 days old his circumcision had still not quit bleeding and me being the paranoid mommy that I am I called the on call nurse who told us to go to chidlrens. We took him in and after being admitted to the hospitals for a day and many blood tests later they said he had thrombocytopenia. His platelet levels had been 90,000 when he was admitted on sunday night (150,00 is normal) and by monday morning had came up to 110,000 so they decided it wasnt severe and we could go home. Around 2 months later we received a call from a hematologist at childrens wanting to do a check up on Kyler. I said "Ok" thinking that we would go in they would check his platelets and everything would be great since he seemed so healthy. (By the way at his two week check up he had already grown 2 and 1/2 inches and weighed 8 lbs and 90z.) He has always gained weight very well and has grown length wise normally, so I was shocked when the doctor suggested that he may have something called Wiskott- Aldrich sydnrome. What made him think he might have it was because his platelets had came down to 83,000 and he also had eczema and very bad baby acne. Of course I came home and looked up everything I could about it and was still thinking that there was no way our baby could have that because he has never had any kind of infections he has always been a very happy baby, and has never had the symptoms such as blood in his poo. Well three test and 4 weeks later and today it was confirmed that he does have Wiskott Aldrich and his platelet levels are down to 69,000. So far his red and white blood cell counts are great, but just because he has them doesnt mean that they will work, so with that said we hope everyone understand why we dont take him to visit them. We promise that as soon as he is better everyone can visit and we will make sure he sees everyone. We know how much you all miss him. We will go to the hematologist monday who will then Set us up an appointment with a stem cell transplant doctor to discuss Bone Marrow (BMT or stem cell transplant) options and we will also assess how serious his case is.
I will try to update this blog at least once every week or every 2 weeks. Thank you to EVERYONE who has offered to be tested to see if they are a match for a BMT for him. I am still amazed at all of the people who willing to go through that pain to help our little boy. You all are definately Angels. Also Thank you to everyone keeping us in your prayers!! We need all of it!!
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