Today is a sad day in the MPS I family as two Hurler kids earned their Angel wings. One actually was an adult but she had had a transplant as a child. I didn't know of her but she must have been one of the first to have had a transplant. She was 27 years old. It gives me hope that the woman made it into her mid-20s but at the same time it is a reminder that the BMT was not a cure, just a life extender.. and for how long, no one knows. In fact, I don't know how old the "oldest" Hurler kid has lived to be. She may have been it. The other ones that I am aware of that are Hurler and had transplants are in their early to mid-20s. She passed from complications with surgery, I don't know what kind of surgery. These kids undergo so much trauma in their life from the BMT to multiple surgeries, sedations, etc. The body can only handle so much.
The other was a 10 month old baby who was 27 days post transplant at University of Minnesota. Baby Vincent's death hits me particularly hard as it was just 9 months ago that Coleson was at that mark at the same place. I was in contact with his family in the beginning and was planning on seeing them when we go for Coleson's 1 year in July. To see pictures of him, in the same hospital PJs, in the same hospital room, with the similar looking facial features is very surreal. That could have been Coleson.
As you read this, Coleson will be in surgery to remove his Hickman line and get his port. Please pray he endures yet another sedation, another surgery. I remember thinking when he got his inguinal hernias repaired at 10 weeks old that I hoped it was his last surgery. Boy, how I long for just the "simple" surgeries of a hernia repair! I wear very different glasses now.
They say things happen in "3s" so in other sad news, a colleague's husband passed away last week after what I can only describe as an extraordinary fight with appendix cancer. He was diagnosed soon after Coleson was born. There should be a picture of Joe Kahler in the Hall of Cancer Fame. His Courage, strength, determination and his love for family is what I will remember most about Joe. He put a check next to many items on his bucket list even after diagnosis that many would not have.
On a positive note, Coleson was weaned off Potassium today and tapered off 1 dose of his BP medicine. He also has been switched to monthly Dr. consults with bi-weekly labs. This means I only have to go to PCH once/month and get his labs done at the PCH clinic in the east valley making that trip a lot shorter.
Please hug your kids, your spouses, your siblings and other family members today and be thankful every day for what you have. I know I am!
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