3/07/2008

Connecting the dots

Just in case we don't get to update during the weekend, a quick update on the week's events...

Max is finally starting to feel better, ie, back to "normal", normal being a kid with deadly cancer who doesn't eat but receives 98% of his daily caloric intake via a tube that empties directly into his stomach. But what's normal these days anyway??

Numbers recap:

Good trend, a bit more data than last Saturday's March 1 post:

LDH (normal range is 470-900)
2/21: 609
2/27: 1143
2/28: 803
2/29: 676

VMA (normal range <8.5)
9/24/07: 9.5
10/8/07: 13.2
10/22/07: 13.3
11/5/07: 13.1
11/19/07: 11.7
12/3/07: 10.6
12/17/07: 12.8
1/14/08: 11.1
1/28/08: 10.4
2/21/08: 17.4
2/29/08: 8.4

Max has lost over 2 kg since getting the intestinal bug (1 kg = 2.2 lbs), in other words, a lot given how little he has to spare. He's back to looking pretty skinny compared to the photo at the top of the blog, and he's pale as can be, and almost bald so he looks quite different again. I'll post a picture this weekend so you can see - we've been lazy/busy in other areas lately but I know a picture says it all.

Max will be starting again on chemo today. His counts are good: ANC: 1250 and platelets 110K (his minimum platelets to be on chemo is 50K, which we lowered from the previous limit of 75K otherwise he'd never get chemo). So it looks like his bone marrow has finally recovered from the whammy of the IV topotecan late January. Max will be starting on oral topotecan today, a decision made by the possibility that the cytoxan he's been taking orally since July '07 has damaged his bladder (he's had blood clots in his pee fairly consistently for the past 3 weeks). Which if turns out to be the case, he can't use oral cytoxan any longer which will be a challenge for us as it appears to have been well-tolerated and (as far as we can tell), effective against his cancer. However, looking at the most recent VMA and LDH numbers, maybe the topotecan really did a bang-up job and is what we should be focusing on using going forward? Unfortunately, there are no simple, definitive answers with relapsed neuroblastoma. Everything's a informed crap-shoot at best.

On the propoganda and advocacy front, this week was busy...

Yesterday, Max was on San Diego radiothon supporting Children's Hospital. He was on 95.7 and 94.1 I believe. Melissa said he did great, was interviewed twice, and got a toy aircraft carrier out of the deal so everyone's happy.

Next week, there will be a feature on the MagicWater Project in our local newspaper, The Carmel Valley News/Rancho Santa Fe Review/Del Mar Village Voice, which is a really good local newspaper combination.

The MagicWater Project is also having discussions with Amy Marcus, WSJ reporter who is on leave working on a Robert Wood Johnson Foundation project focusing on orphan diseases. She's interested in our model, and of course our outcomes. Who knows what may come of these discussions, hopefully some good visibility and credibility for what we're doing. Like Steve Jobs' 2005 commencement speech at Stanford, hopefully this will all make sense at some point in the future.
"Of course it was impossible to connect the dots looking forward... But it was very, very clear looking backwards ten years later."

3 comments:

Anonymous said...

Thanks for the update! Thrilled to see those numbers coming down... The "connecting the dots" quote reminds me of my favorite Bible verse... "We walk by faith, not by sight." Faith in knowing that you are making the best decisions possible for Max with the info you have. Max is blessed to have you as parents...you both work tirelessly researching, advocating, and working for a cure. It WILL happen!!!
xoxolisa

Jen said...

I heard one of the DJs on 93.3 talking about a "Max", and how he just wanted that aircraft carrier, this morning. For some reason, I just knew is was your Max. He made quite the impression with the DJ.

Anonymous said...

Keeping positive thoughts from Oregon and sending them your way! It amazes me how the both of you juggle all you do and stay so focused and current on all aspects of this journey. You are both AMAZING!!! xo Linny

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