First grade, treatment change

It's been a while since our last post. Chalk it up to August blahs, back-to-school schedule, changes in Max's treatment and general lack of energy and will to do as little as possible cancer-related other than what was necessary (necessary is getting up a 6am to give Max his glutamine and zophran - unnecessary is blogging about it)!

Notice I slipped in a 'change of treatment' above. Just to check to see if you were reading, and yes, we made a slight change to Max's treatment regimen but we haven't been able to fully execute but I'll get to that in a minute.

We decided that we liked the oral chemo regimen that we were on, and are sticking with that until we see data that its not working. We switched from irinotecan back to etoposide/VP-16 which Max took a few times in July. We didn't like the side-effects of irino (nausea) and so hopefully etoposide will be better tolerated by his stomach.

As I mentioned above, we haven't had a chance to really execute this new treatment regimen because Max's counts have been low and not recovering. It could be the oral cytoxan every day is just too much, so we took him off as of last Thursday and will see this Thursday if his counts are high enough to start on the cytoxan again, adding the Etoposide in as soon as possible. Max is still taking the nifurtimox daily and he's tolerating that well, though we've switched to 1 pill in the AM and 2 in the PM. We think he still has some 'irritability' issues related to the nifurtimox but given how efficacious we think it is, its a small price to pay.

On the supplement front, Max continues to take an artimisinin compound containing artemisinin, artemether and artesunate. It's relatively expensive ($2/pill/day) but worth it. He's also taking glutamine, skullcap, vitamin D, acidopholus/bifidus, melatonin, tumeric, calcium, bromelain, papaya enzyme, fish oil, and olive oil. We give him zantac 2x a day to help protect his stomach from the chemo and the celebrex, zophran when he's nauseaus, and immodium when he's got the runs. Most of this we can give him through his g-tube but some he has to take orally and in that area Max has shown improvement (though not as good as Sam who shows off by taking 3-4 pills at a time).

Also, we discovered we weren't giving him enough calories a day to gain weight, so its back to the Nestle Peptamen for Max for the time being until we can figure something out. We 're still giving him the vegetable concoction that Melissa makes up from beets, kale, red cabbage and garlic, but that's during the day. At night and once during the day he gets the high-calorie Peptamen and it seems to have had its desired effect already, Max gaining a kilo in one week as of last Thursday. He's also starting to grow hair because of the move away from IV chemo, which has me personally terrified as I now have an justifiably irrational fear that if his hair's growing, so is his cancer.

Max started school two weeks ago. His teacher this year is Mrs Sturt and she came highly recommended and is a match made in heaven. She's very, very dedicated and super interested in Max's situation and how to contribute to his betterment. She's already planning two fundraisers at the school. Mrs. Sturt has a web page and blog up for Max's class and you can see it here.

Hannah continues to do well in everything at school, and her new teacher Ms Janis seems perfect for her and vice-versa. As usual, Hannah was hugging her new teacher on the first day like they were long-lost best friends.

This past weekend Melissa and I got away for two nights (sans kids) thanks to her family/my dad springing for a couple of nights at the Marriott in downtown. We had a fabulous marina and bay-view suite thanks to Blanche and thoroughly enjoyed ourselves. Thanks Matt, Jenny, Randee, Mike, Mom/Dad Porter, Greg, Blanche, Jarod, Bree, and 'ol man Mikulak!


Randee said...

So happy you're back--missed your updates and understand sometimes it's good to take a break!! We are so glad you had such a nice time on your much deserved weekend of fun and rest!!! Blanche really stepped up to the plate on this--Thank you, thank you, thank you!!!

Sounds like Max and Hannah are off to another fine year at school--can't wait for the school pics!! I'll bet Nic enjoys his only child hours while his older siblings are off at school!!

Take care--Love you guys!! Randee

Anonymous said...

You, Max and your family are always in my thoughts.

Anonymous said...

Don't you love it when you find a really great teacher!! That is always exciting!!

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