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Relapse, Day 9, DI

July 10, 2009

Did that word scare you?

I heard RELAPSE today, in person, when I spoke with Tyler’s dad. After he said the R-Word, I had trouble focusing on what was said. Having become accustomed to seeing small children wearing masks, seeing a 14-year-old-boy wearing one created a pause. A boy who should be running around with friends, and thinking about an upcoming football season is instead thinking about how leukemia is ravaging his body— again.

Tyler relapsed on June 23, 2009. Almost exactly 3 years after first being diagnosed.

This time, though, the protocol is different. Those who relapse experience a “Re-Induction” phase, where the dosages of chemo  are high and likely include differing drugs and timing. After this period another Bone Marrow Aspiration will be done to determine if the disease has gone into remission again. This remission must be achieved and maintained for him to be eligible for a Bone Marrow Transplant.

Tyler’s father states in his Caring Bridge site, “With a relapse the whole treatment begins again, and more aggressively then before. Isolated Marrow relapses do not have a good prognosis – a fraction of his current Event Free Survival of 65%”

Curiously, at this point in time, even if Tyler reaches these goals, he has no bone marrow matches. That means he will not be receiving a transplant unless some one new who registers is a perfect match. His family is asking for people to get registered at http://www.bonemarrow.org because they need a match to continue with treatment. This reinduction is repeated until transplant or until it becomes too toxic for his body.

His father also stated, “It is amazing how fast that this has changed from ‘he is doing great’ to ‘we will hope and pray he makes it through the next 21 days’ – and yes, both of those are direct quotes from the doctors, said no more then 30 days apart.”

While reading about Tyler from start to finish, I also read about Alexa, Delton and Kui, all of whom died after a relapse. Not to mention another girl who died 12 years after diagnosis; her father continues to blog and to run4kelly.

The sucky thing about all of this is, Tyler was doing well.

Keep that in mind when we say that Isa is doing well, it means just that, for this one moment in time she felt good or has gained weight or whatnot.

But as my husband likes to say, “It ain’t over until it’s over. And that ain’t the outcome that we want.”  Isa will never be a normal little girl again, she will always be a cancer survivor and with that status comes the threat of relapse.

The emotional toll that cancer takes on a family is unbelievable. Families deteriorate because of it.  AJ, Tyler’s brother, did NOT have his brother at a lot of his games. Siblings continue to get the regular treatment, while the cancer kids get special rules. Someone just recently told me of a mother who just left the family behind. Marriages suffer stress, jobs are lost, lives are changed from cancer.

Don’t pretend for one second that you have any idea what it is like, because, unless you have had a child with cancer YOU DON”T.

It ain’t over until it’s over.


 

[UPDATE:  Tyler Genneken Foundation]

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2 Comments leave one →
  1. July 11, 2009 3:39 pm

    Its so scary, its never over even when they are done with treatment, we will always have that nagging feeling in the very back of our minds that it will come back. How is Isa handling DI, any side effects?

    • July 11, 2009 5:48 pm

      Just as I read your comment, Isa shouts from the other room. Really screeches, “you’re bad G.” Timing is a funny thing. It is only day 10 here, so i expect some side effects! But so far we are just looking at the decadron ones, like hungry grumpies.

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