Wednesday, August 5, 2009

Good News!!

Monday Kyler had a check up to see where his platelet levels are..well his platelets have came down to 56,000 which isnt great but isnt horrible either. We just have to make sure he doesnt bump his head. The good news is that we found out that they have found a few "potential" donors so now we are just waiting to see if any of them work out. Another GREAT thing was that monday when he had his blood work done he laughed soo hard the entire time and it was like he never felt the needle or anything. He had the nurse and me laughing so hard we couldnt breath. It made my whole day perfect because he didnt seem to feel any pain. You wouldve thought she was tickling him rather than sticking him. I just want to mention again how greatful I am to every one thinking about him and praying for him...I really believe that monday it wasnt just a coincidence that he didnt seem to feel pain because he usually screams and cries. I know every ones prayers are being heard and I really believe that monday was God's work. I will update the blog when we know for sure we have a donor but in the meantime please keep him in your prayers.


  1. Hi Jill! I am so glad to be able to "check in" on you guys through this blog and keep updated on how Kyler is doing! One thing for sure -- he is very lucky to have a perfect little mommy to take care of him through all this! You guys are doing an awesome job with him and I admire your strength sooo much! Please let me know if there is anything we can do! Love you! Christal Tate

  2. Congratulations on your beautiful baby boy!

    I'm a 45-year-old father of five who has WAS. Never had a BMT, but did have a splenectomy at 28 (my platelets used to run in the 20-30K range, but the main reason I had my spleen removed was to bring up the platelet count so I could take ibuprofen to control my auto-immune vasculitis in my legs).

    I used to teach astronauts how to fly the space shuttle but now I'm a stay-at-home dad and writer (govt bureaucracy was just too much to take).

    Two of my older brothers died at 5 yo; two of my nephews had non-sibling BMTs that went very well.

    If you haven't found us yet, please join our WAS community on the IDF Discussion Forum at

    Lots of family experiences related there, and quite a few of them aren't as dark as many doctors paint things, even for those of us who haven't had BMTs (I'm a good example, and I've even had lymphoma...which the chemo eradicated text-book perfectly 3 years ago.) One thing we discuss is the gene therapy trials going on in Europe right now.

    The person who got the IDF WAS forum going also started up a detailed WAS website at

    that we're still reviewing to polish up. Pretty amazingly extensive, with contact info, etc.

    I would also urge you to get in touch with Dr. Candotti at the National Institutes of Health; they are immensely knowledgeable in WAS and see many families.

    I do not want to throw a wrench (and my nose) into what I fully understand has been a very difficult personal decision for you, but unless Kyler is suffering from frequent infections or showing serious bleeding episodes even now, a BMT might be more drastic a course for him than is absolutely necessary.

    All I'm really hoping to suggest is that you ensure that you feel fully informed regarding your choice; knowledge is power, and there are not many docs around the country who have much experience with WAS since we're so rare. (Do you know the precise mutation that Kyler has? Some point toward milder expressions of the disorder.) Ayden's doc in Houston had worked with Dr. C at NIH; therein Ayden had a ringer on his team.

    Hope to see you on the forum; new moms like you is the primary reason we've been building it.

    Godspeed to you and all your family.