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.

They reason they have to halt production is because the plant in Boston has to be decontaminated due to a virus, so there really isn’t anything anyone can do about it. So this means that the drug is going to be rationed.

Gosh, I hope Kyle is still going to get what he needs.

According to Genzyme, current inventories of Gaucher disease treatment Cerezyme are not sufficient to meet global demand. The plant will not return to full operation until the end of July, with expected shortages beginning in August and inventories stabilizing by year end.

This is terrible news, and I’m praying that enough Cerezyme was ordered for Kyle so his treatments will not be effected. I emailed Kyle’s doctor in Toronto asking about it, so I’ll post when I hear something.

If his treatments are stopped because of a shortage, we’re going to be back at square one, and my sweet little boy is going to suffer. Without treatment every two weeks, Gaucher cells will continue to build up in his liver, spleen, bones, and other major organs. His platlets will drop and so will his appetite, and he’ll feel awful – again.

Worst case scenario is that shortages begin in August and Kyle’s treatments are halted, which means he may go without treatment for possibly 4 months if inventory stablizes by the end of the year. Which is why I’m praying that there has been enough Cerezyme ordered for Kyle to keep him going for the next few months.

I’ll post an update when I know more.