Archive for the ‘Treatment’ Category

Finally, Home Nursing on the Horizon

Posted by Melissa | Filed under Treatment

Ever since Kyle was diagnosed and the idea of home nursing was presented to us as an option, I have been pushing for it. His bi-weekly treatments are something he has to have for the rest of his life, and the older he gets, the more disruptive the long drives and days at the hospital are [...]

Read more | Comments (3) | Feb 23, 2010

There Are Too Many Unknowns…

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

Yes, they have a cord blood match for Kyle. But are we going to do the transplant? Well, in my quest to learn as much as possible before making a life and death decision regarding Kyle, I have to say that as of right now – my answer is no. Here’s why:
I contacted 4 of [...]

Read more | Comments (1) | Aug 9, 2009

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. [...]

Read more | Comments (3) | Jun 23, 2009

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 [...]

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Read more | Comments (3) | Jun 21, 2009

Oops, forgot to mention…

Posted by Melissa | Filed under Gaucher Disease, Treatment

Yesterday when I posted about Genzyme halting production on the medication that Kyle takes to treat the physical symptoms of his disease, I forgot to mention why…
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 [...]

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Read more | Comments (0) | Jun 17, 2009

Treatment

Posted by Melissa | Filed under Thoughts From Mom, Treatment

I’m really amazed at how quickly and effectively the Cerezyme treatment is working. It’s not just his tummy that is getting smaller, but is disposition is better.
Kyle has always been an easy, happy baby, but since he started treatment there’s an even deeper contentment. It’s hard to explain this change. But from what adults who [...]

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Read more | Comments (9) | Jun 2, 2009

Changes after just 5 days?

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

It’s been a crazy week around here, so I haven’t had a chance to update in a few days…
I can’t believe that Tuesday Kyle goes in for his second round of treatment, already. The time flew by, and I’m glad for that. I truly believe that his first session has already caused changes in his [...]

Read more | Comments (3) | May 24, 2009

Will We Ever Get One Without The Other?

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

I swear that since Kyle’s medical issues began last October, there has never been a good thing without a bad.
As mentioned earlier today, Kyle received his first Cerezyme treatment yesterday and it was such a good thing. I am so happy that he is finally getting the medication his body so desperately needs to begin [...]

Read more | Comments (7) | May 14, 2009

First Enzyme Replacement Therapy Treatment

Posted by Melissa | Filed under Appointments, Gaucher Disease, Treatment

Yesterday was Kyle’s first treatment, and it went amazingly well. He took it all like a pro.
He had a bottle of formula after getting his blood work and IV line ready to go, then he fell asleep in his stroller. I left him with the nurse to go and get a coffee, and when I got [...]

Read more | Comments (3) | May 14, 2009

First Treatment Date Set

Posted by Melissa | Filed under Appointments, Treatment

Finally, some progress has been made – we have a date for Kyle’s first enzyme replacement therapy session.
His appointment was originally set for tomorrow, but unfortunately, his Doctor was not able to be there to supervise his treatment, and then the doctor they had lined up to replace Kyle’s doctor is also away. So with no doctor available to supervise him [...]

Read more | Comments (7) | May 6, 2009