Good News, Info To Chew On, Update, And Something Strange

Posted by Melissa | Filed under Gaucher Disease, Treatment

While Kyle was receiving a treatment today, I received good news today concerning the expected shortage of his treatments come August…Kyle will NOT have to miss any of his treatments.

They said priorities are in place, and that I don’t have to worry about Kyle’s treatments. In fact, they have appointments booked right up until September for him. So at that point, they’re going to assess him to decide if his current high dosage can be lowered, or they’re going to keep him where he is now. I am so relieved!

Kyle also had bloodwork done today that is needed to help in the process of finding a bone marrow match. I explained to them how we weren’t really sure if we wanted to do the transplant, and this is what they said:

1) We’ll do the bloodwork and send it off for matching.

2) When we find a match we can meet with the bone marrow transplant team to discuss everything, and then we can make our decision based on that.

3) Doing a cord blood transplant does in fact, have a lower risk as opposed to bone marrow. And, the results can be the same as bone marrow. Which is a potential cure.

So as of right now, they are looking for a bone marrow and cord blood match, and I’m praying for a cord blood match. I think if we do anything, I’d rather do cord blood because of the lowered risk.

I also learned today that they finally know both of Kyle’s mutations, which means that any family members who want to be tested to find out if they are a carrier of Gaucher, can now do so.

And finally, something really strange happened…

Kyle used his eyes perfectly.

He was sitting in his stroller and I was in a chair beside him talking to him, but he was watching the nurse. Well, when she walked from one side of the room to another, he followed her with his eyes from left all the way to the right perfectly until his eye was at the right corner, and then he turned his head, like anyone would do when something goes out of your vision.

Now this may not seem like much. But I was freakin’ amazed! Typically, his eyes would have stayed to the left until he unlocked his gaze by moving his head to continue watching her. To see him use his eyes like he’s supposed to, well, it was so beautiful.

So a lot happened during treatment today, a lot of news, plenty to think about, and best of all, a precious moment :-)

Permalink | Comments (3) | Jun 23, 2009

3 Responses to “Good News, Info To Chew On, Update, And Something Strange”

  1. Tina Says:
    June 24th, 2009 at 9:22 am

    OMG, That’s all I can say right now, is OMG. He’s a fighter, his brother and sister are in for some good battles with him down the road…

  2. Bonnie Says:
    June 25th, 2009 at 10:54 am

    WOW, that is great news all around Lis. Keep up the good work Kyle!! :)

  3. Michell McKellar Says:
    June 25th, 2009 at 4:07 pm

    WOW, finally some good news, without any bad!! :)
    That is so wonderful that Kyle wont be missing any treatments!! And something so simple as moving the eyes is taken for granted by so many, but I bet that just made your day! Keep up the good work Kyle :)

Leave a Reply