Bone Marrow Transplant Hanging Over Our Heads

Posted by Melissa | Filed under Gaucher Disease, Thoughts From Mom, Treatment

The whole bone marrow process is out of our hands. It’s up to the doctors to make things happen.

But that doesn’t really stop people from asking us about what’s going on with the whole thing. And to be completely honest, ever since we found out our other son was not a match for Kyle, we’ve been hesitant about the whole thing.

To be honest, I know in my heart that if we proceed with the transplant we’re going to lose him. The odds just aren’t good that he’s going to survive it, let alone actually be cured from it.

It would be a little different if they told us that by doing the transplant, he has like a 95% chance of being cured of his disease. But they can’t say that. They have no numbers to give us. Heck, even if he does survive the grueling transplant, it may not do a damn thing. He disease could remain completely unchanged.

This is why the whole thing is so very hard for us to decide. People keep wondering when it’s going to happen, why we’re waiting, saying they would do it right away…but until it’s your baby’s life that you hold in your hands, you have no idea what it feels like to be in our place.

You have no idea what it feels like to know with all your heart that if you go through with it, you’re going to regret it for the rest of your life. Because that’s how I feel. I know if we do it, we’ll be saying goodbye to Kyle.

Yes, we’ll likely have to do it someday in the next few years, but not today. Maybe if we’re lucky, not ever.

But I cannot kiss my happy, growing, developing, sweet little boy goodbye right now. I cannot put him through chemotherapy and make him so very sick, and then put him through a transplant that has little to no chance of working.

I can’t do it right now. I don’t want to do it right now.

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Permalink | Comments (3) | Jun 21, 2009

3 Responses to “Bone Marrow Transplant Hanging Over Our Heads”

  1. Ann Says:
    June 22nd, 2009 at 8:46 am

    I can’t even imagine how hard this must be on you. This is yours and Jeff’s decision, don’t let anyone tell you what to do or what you should be doing. You know what is best for Kyle. Please know that i am praying for a miracle for Kyle.

  2. Tina Says:
    June 22nd, 2009 at 10:25 am

    You have to do what is right for you and your family. Just know that we are all here to support you in everyway. It’s not Kyle’s time, I know in my heart. Kyle is a fighter just like the rest of us and he is going to pull through this. He wasn’t born on the 27th for just any reason. His angel will keep him strong and safe. Keep smiling and your head held high.

  3. Michell McKellar Says:
    June 23rd, 2009 at 2:20 pm

    I can’t even begin to imagine how you feel and everything you’s have been through. You just have to take it day by day. You’s know what is best for Kyle and I know you are doing everything in your power to make things better. You are strong and a wonderful mother. I pray for Kyle every day, and you’s are always in my thoughts. And don’t hesitate to ask if you need anything I am always here for you.

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