September 26 - Avalon medical update

I'm doing this part separate from the other, so you can choose whether or not to read it. I fully understand that some people coming here are here to relax, laugh, and walk away from their own stress for a bit. I appreciate that. Its why I'm addicted to several mindless shows on cable. Escapism is free and good for the soul.

But, some people coming the site do want to know about my daughter. For you, this is the easiest way to get you up to speed. (particularly, since her website is nearly 2 years out of date)

As of yesterday morning, I still had not heard about Avalon's lab tests from Thurs Sept 20. That's very unusual for our clinic, but I knew they'd run tests that required being sent to labs far and wide, so I wasn't too concerned about the time frame. I called clinic Tues morning, and left a message asking about results and leaving my home and cell number - knowing we'd be gone to my daughter's school. (with the stress they cause me, that stupid school owns at least a barn or two on my fat farm...) I did what I always do, and gave them permission to leave the results on the voicemail - its easier for them, rather than having to track me down.

When I never heard from anyone, I presumed there would be a voice mail waiting. Sure enough, when we got home at 5:45 - there was the hospital number in our caller ID. After threatening the kids to silence, (if there is no threat...people in China can hear them, and I can't hear squat) I called into our voice mail. When I got to the hospital number, I nearly fainted.

Rather than the typical, "Hi Alicia! Its Sue,..." Or, "Hi Alicia! Its Diane..." I heard, "Hi Alicia. Its Dr. R***...." At our hospital Docs don't normally call. I've talked to ours a few times on the phone...but my daughter has had some pretty nasty problems too. As much as I love our doc, his voice was the absolute LAST thing I wanted to hear associated with lab results. Worse, his message just said, "Hey, I'm going to call you on your cell phone." That's it. No results, no "don't worry"s, just a few sentences indicating that he didn't want to leave a message - he really wanted to talk to me himself. Ugh.

Here's where the torture ramped up to super level. I realized my cell phone hadn't rung all day. Then, I thought about the number I gave him, and realized, to my horror, that I'd goofed up the number, again. I don't call myself, and frankly - can't remember my number to save my life. I have absolutely no business ever giving it out - I get it wrong 90% of the time. Yesterday, was no exception. So here it was, 5:45, after clinic hours - with no way of getting a hold of the doctor. For a medical emergency, you can call the Heme-Onc on call. For being a dweeb and giving the wrong cell number - you just have to suck it up until morning.

First thing, I called Nick (hubby) and described the message - hoping he wouldn't think along the same lines. Fat chance on that. We've been together 25 years, we long since gave up having individual thought patterns. He went right to the ugly place I was. After much discussion, we managed to calm ourselves and rule out any cancer relapse scenarios, or life-threatening issues. We knew Dr. R*** would have turned the world upside down to find us if we needed to go to the hospital. That left less-than-stellar lab reports on the table. And basically, our only option was to wait it out. In Nick's case, that meant staying late at the house we're trying to sell, and working himself into a forgetful, exhausted frenzy. For me, that meant eating things I shouldn't. Duh...I'm a stress eater. And this, definitely, qualified as STRESS.

This morning, I called Heme-Onc again, and left a new message. I apologized for having the brain of a frog, and begged for mercy with a return phone call. I outed myself and my burgeoning gray hairs and heart condition as I waited for news... God bless those people - they knew I was a wreck. I got my phone call by 9:30.

Dr. R*** did, indeed, make the return call. Again, I adore this man...but again, his voice made my heart sink to ankle level. The news wasn't all bad, but it couldn't exactly be categorized as good. Quick review: Avalon has a high level of protein in her CSF (cerebral spinal fluid). This is not good. Option #1 - Best case scenario - we would find indicators of general body stress, showing that her body was not happy having some "hardware" in it (her shunt). We would put her on low dose anti-inflammatory drugs - and allow her body time to adjust. Option #2 - Worse case scenario A - we would find high levels of inflammation indicators and other blood values indicating shunt rejection. Avalon would be placed on anti-rejection meds like an organ transplant patient. Option #3 - Worse case scenario B - Avalon would show positive bloodwork for a new disease - and auto-immune disease. Treatment will depend on disease.

Well folks, it appears to be Option #3, Avalon has developed a new disease process. Avalon's neuro-optho had warned me that this was distinctly possible. She said that children with blood/immune system cancers, like lymphoma and leukemia, have a much higher possibility of developing an auto-immune issue. Add to that, we have a horrific family history of auto-immune problems, and this was our main fear. Oddly enough, I had questioned this possibility very strenuously back in Feb of 2007. (a fact that I forgot until my hubby and a close friend reminded me) In Feb, Avalon's CSF was only showing mild elevation in the protein level - still perfectly withing normal range. In Feb, the ANA (anti-nuclear antibodies) titers were normal. Now, she is positive for ANA. Without getting too medico on you, normal people just don't have positive ANA's. Its a definite indicator of auto-immune disease.

Also, she had elevated segs. For cancer people, or medical people - you know what that means. For everyone else, segs are a part of a blood work differential done on white blood cells. High segs can indicate impending relapse. Avalon's were not that high, and the rest of her counts were fine. Elevated segs indicate general body stress - and point to auto-immune disorders. Add that to her increased fatigue in the past few months, and the protein in her CSF - and now we have more than enough ammo to get an appointment with a rheumatologist to try to figure out what it is that's after her.

After checking into the most likely culprits, its also apparant that repeated anesthesia episodes are probably not the culprit for her hair loss. I've been asking for months, why her hair falls out so easily, and in such large clumps. You'd think someone would have put two and two together. Allopecia is also a hallmark sign of auto-immune dysfunction. I'm totally understanding how adults can go years without a diagnosis. This kiddo sees highly trained specialists and is constantly gone over with a fine-toothed comb - and they missed the signs.

On one hand, I'm glad that I pay close enough attention to her that I've been complaining about the fatigue and hair loss for months. I'm glad I know my daughter well enough to know she's been exhausted/in pain. I'm glad I can advocate for her, and I haven't been super paranoid crazy mom all this time.

But good grief, I'm damn sorry to be right. Just once, I wish a doctor would say, "No, its nothing." and actually be right. I've heard that phrase, they've just always been mistaken...

So, it looks like Avalon's chariot will likely be a permanent member of the family, rather than a visitor for a few years. And, we're gaining two new departments for her resume. I could sit and cry, but I don't have time. She's a grinning, happy, ornery 4 year old - who can't be bothered to sit still long enough to be pitied. She's got it going on. And she's kicking my whiny butt into moving on.

Thought you'd all want to know. At the very least, this better explains my recent hurdle off of the diet train...

- Alicia losing weight to raise awareness of pediatric cancer www.crazycancermom.com