Pre-Weekend Update

Since Max started his new chemotherapy protocol on Monday to try to stop the progression of his relapsed neuroblastoma, I thought the time was right for an update. If you need a refresher on what he's taking, read this post.

The most recent problem, blood in Max's urine, resolved itself on Tuesday morning. I got a phone call at work and it was Max, totally excited that he had clear, lightly yellow pee! So far we haven't seen drop of blood (and believe me, we're looking) so perhaps that fun is behind us.

Overall, Max is tolerating the irinotecan and temodar extremely well. Other than throwing up on Monday, he's had little or no nausea and we're able to continue with the Peptamen feedings throughout the day and overnight. He's getting IV hydration at night (his pole in his bedroom now has two pumps - one for the g-tube and the other for his port catheter access), so we're not giving him as much Peptamen at night. Consequently Max is not gaining back the weight he lost in February when he had the stomache virus. He was up to 21.9kg on 1/24, down to 19.7kg on 3/3, and now he's halfway back at 20.8kg today (remember, 1kg = 2.2lbs). Amazing - how easy it is to lose weight and how difficult to gain.

We met with his radiation oncologist Dr. Murphy on Tuesday. The plan is to try to radiate both his S2 & S3 vertabrae as well as the nodule in his lung (only about 1cm according to Murphy). Radiation should start next week though we're waiting on Max's primary oncologist, Roberts, to return from vacation so that he and Murphy can agree on this plan. Luckily for us, after extensive negotiations between myself and Max's cancer cells, they have agreed to stop growing during this time realizing that it would be unfair to keep doing so while Max's docs are on vacation. See, cancer can be nice and reasonable sometimes.

Max's blood and urine counts are stable and in some ways improved, which is good but also leaves us wondering if something is causing the positive impact or whether it is natural variability. For those of you who follow this stuff, here's some recent trends (sorry for lack of tables in blogger):

4/1 -LDH 1180
4/1 - VMA/HVA 24/23.8 (on 3/27 was 18.8/21.8, so not trending the way we want it)
4/4 - platelets and RBC transfusion 4/7 - LDH 804
4/7 - C-reactive protein 0.5 (was 0.8 on 3/13, looking for <0.3)
4/7 - 1 oz calf liver at night (for RBC growth stimulation)
4/9 - LDH 840
4/10 - LDH 927

The rest of the blood tests that we do in consultation with Dr. Belanger, our naturopath, should be coming in the next 4-5 days. I call these our 'leading economic indicators' and they provide further evidence as to what is happening with his cancer.

Max gets a break from chemo this weekend, then starts again on Monday for the 2nd and final week of this round. Then he has a week off, then two weeks on again. During the 'Off' weeks, he will be taking rapamycin. See the plan if you want further detail.

We will be surprising the kids with a Legoland trip tomorrow. Since it's right up the freeway, it's quite easy to do, and the park is relatively uncrowded compared to a Disneyland or equivalent.

Will's dad, Pat has managed to convince Clear Channel Outdoor to put up a billboard (and perhaps up to three) in the greater Boston area promoting MagicWater and driving them to the website where we hope we can convert their curiousity into generosity. You can see the concept for the billboard here, as Pat has made it the header on Will's blog.

On Thursday we will be holding the Spring MagicWater Project meeting here in San Diego. As much as these meetings provide a foundation for discussing and funding new research and effort to bring treatments that will save our kids to reality, they also function as a sort of support group. I'm looking forward to Thursday and being surrounded by a bunch of smart, committed, compassionate people who share a common vision of saving the lives of kids whose only fault is that they were unlucky enough to be struck with an orphan cancer like neuroblastoma that receives so little attention.

Thank you to everyone who has sent supportive and informative emails, phone calls and letters. We really do appreciate all the kind thoughts and suggestions. If we're delayed in responding, please "remember that life's a great balancing act and will you suceed? YES! you will indeed. (98 3/4 percent garanteed). Kid, you'll move mountains!"


Anonymous said...

Wishing you all a super time at Legoland! Maybe someone will have a box of free kittens in the parking lot! :) xolisa

Anonymous said...

Thanks for the update. Have a fun, RESTFUL, and 'puke free' :) weekend!!!

Anonymous said...

Have a blast at Legoland...Your updates are highly appreciated and I look forward to knowing that Max is having better days. xo Linny

Randee said...

Good Morning!! Once again as I read your post yesterday I was overwhelmed with all you have on your plate. So glad Max's first week of chemo went well--wishing you a wonderfully fun day at Legoland and so looking forward to seeing you on Sunday!! Praying for your Spring MagicWater meeting and knowing you will meet with success!! How do we go about getting a MagicWater billboard in SD? Have an awesome day and know you are a constant in my thoughts and prayers. Love, Randee

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