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Sunday, 20 March 2005
A family's worst nightmare
Mood:  blue
Topic: Cancer Sucks
One of the 'cancer moms' I've gotten to know a little bit is facing what must be the most terrifying possibility imaginable. Her precious son Nathan (4 years old), who has battled his way to NED (no evidence of disease) status against stage IV neuroblastoma, will have an MRI tomorrow to see whether or not he has relapsed. This little boy just finished treatment a couple of months ago and this family was just settling into a somewhat normal life.

Of course, normal life for a pediatric oncology patient is not normal life for a child who has never faced cancer. It's still filled with frequent checkups, blood and urine analyses and scans. Sometimes it includes getting fitted for hearing aids because the toxic chemicals that have been pumped into these tiny bodies can destroy their hearing. And it's not normal for the parents, whose hearts race and plummet every time their child gets a fever or begins to limp...as Nathan did a few days ago.

What makes the prospect of facing relapse so hideous is that, as a parent, we know now. We know what the chemo is going to do to our child's body. We know just how horribly our lives will be turned upside down. How our other children will suffer due to our absence. But most of all, for parents of a child diagnosed with neuroblastoma, we know that a relapse is a virtual death sentence. Sure, there are drugs that can beat it back into submission (not remission) for a little while. There are experimental treatments available that might buy us some time. But the bottom line is that a child who relapses with NB will die.

How cruel it is to have fought so bravely against this monster - to have hope that maybe your child will be one of the lucky ones who ultimately wins the war - only to be blindsided just when things seem to be going so well.

I watched The Incredibles yesterday. The villan in the movie creates a robotic machine that is intent on destroying its enemy. And what makes it so deadly is that it learns from the mistakes it makes. It learns from its enemy's successes and takes advantage of them in the next battle. So what the hero does to defeat it the first time, won't work the next time. This is neuroblastoma. The drugs that defeated it the first time won't work as well in the next battle. All you can do is keep throwing new things at it to keep it at bay a little longer. You hope and pray that something you throw at it strikes a lethal blow and kills it for good.

My heart is breaking for this family. I can well imagine their terror. They've already accepted in their hearts that their son has relapsed. If by some miracle, they hear otherwise tomorrow, well - they'll be more elated than I can possibly imagine. I really pray they'll get their miracle.


Posted by catherino at 1:50 PM PST
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Tuesday, 25 January 2005
High Anxiety
Mood:  hug me
Topic: Cancer Sucks
Pre-scan anxiety is hitting a fevered pitch right about now. Nicklaus has an MRI 2 days from now. It was originally scheduled over 2 months ago, but thanks to a steady influx of pre-school germs from Noah, we had to cancel it due to a bad cold. He can't be sedated if he's got a cold or practically any other normal childhood illness that kids have ALL the time. So it's basically a total crapshoot as to whether or not he'll be healthy enough to go through with it. He's been sniffle-free for nearly a month now. This morning he woke up with a stuffy nose. I told him in no uncertain terms that he could NOT get sick before this scan. I'm sure that'll nip in looming illness in the bud.

So it's been over 8 months since his last MRI. And he's supposed to have them done every 6 months. But since his oncologist wasn't worried about the delay, we've been trying not to be either. Even though our rational minds tell us that everything will look just fine, that doesn't keep the irrational what-ifs at bay. Plus it's just a stressful process itself. He can't eat or drink milk before the scan because of the anesthesia. Try explaining that to a 2 year old. Actually, I've never tried it because we've never done this at 2 years old before. We've done it at 2 days, at 2 weeks, at 2 months. We've done it more times than I can even count. But never at 2 YEARS.

For those of you who have never seen or experienced an average 2 year old, here's the thing. They are a force of nature. They cannot be contained. They cannot be reasoned with. It's their way or a complete nuclear meltdown. That's a normal 2 year old. Multiply that by 10 and you're getting close to describing Nicklaus.

So I'm feeling more than a little anxious.


Posted by catherino at 10:50 AM PST
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