Friday, October 31, 2008

Can I Get Off the Roller Coaster?

It seems like we have good ups and then some bad downs with this disease. Today, Tyler tried vanilla pudding for breakfast and ate the whole thing without any problems. He says it tasted delicious on his tongue, so it was a good place to start. We were both thrilled with his progress and trying to figure out what he should try to eat next.

Then we met with our doctors here and they raised some concerns about a numbness that Tyler has been feeling in his foot since Wednesday. The numbness itself wasn't entirely concerning, but the fact that Tyler has lost ability to pull his toes up on the left side is concerning. Tyler is a strong man, with good muscle tone, so he should be able to exert some pressure against a hand that is pushing his foot down (imagine pulling your foot up in the opposite direction you would use on your gas pedal -- heel on the floor, pulling your toes up). Unfortunately, that wasn't happening today.

The doctors said that they don't know what has caused this, so they want a neurologist to take a look and help determine the root cause of this problem. They say the numbness/nerve damage could be caused by the radiation, or it could be caused by the leukemia itself. They will take what they learn from the neurologist and from the Brain MRI (we hope both are happening today) and try to figure out why Tyler's disease is such a challenge.

We are discouraged because the doctor said that it is possible that Tyler's CML is so resistant to all of the nasty things they have thrown at it, that we might not be able to get Tyler eligible for ANY transplant. I have come to believe that this is Tyler's best hope, so it is heart wrenching to hear we might not be able to travel this path.

In addition, the doctor says that Ty really needs to start taking his Tasigna again, as they are already seeing blasts (leukemia cells) in his blood tests.

In the meantime, I try to remain hopeful that we will find a cure that works for Tyler and that his spirits don't drag too low in light of the news we got today. All in all, it isn't the birthday I was hoping he would have today.

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