Cloud 6 on the Horizon?

Gee, we have all these posts as of late, but nothing about Max and his battle. Let me get you up to date.

Max is feeling great. Home chemo is way easier on a kid than IV blasts. But you have to do what works. He’s been having a lot of nausea/vomiting since the Etoposide chemo was added to his daily meds. Of course, we didn’t figure this out for about three weeks. Kids don’t seem to have the capacity to recognize when they feel nauseous all the time. Dr. Roberts prescribed an additional anti-nausea medicine last week and Max seems to be feeling better because of it. He ate a hotdog Friday night and 4 pieces of sourdough at the Fish Market on Sunday (he hasn’t taken any food by mouth in 2-3 weeks).

Thank goodness for his mickey-button or the kid would have wasted away by now. We continue to give him 1500ml of his formula along with 400-600ml of veggie-brew daily. Yesterday his weight was up again to 19.0kgs. 41 pounds. Can I hear a “WOO-HOO!” Alright!

Today is Tuesday and it’s 7:30am - I’m at the hospital right now with Max. He’s in for an MRI. Max loves MRI day. Kooky-kid. I think he enjoys riding on the gurney down the halls and waking up to popsicles, graham crackers and a Disney movie afterward. He had an MIBG bone scan last week. Both are to track the spot on his spine that has remained unchanged over the past 5-6 months. It appeared on last weeks’ MIBG, which I can see while he’s having the scan, that the spot is still unchanged. This is good news – no growth.

Can anything be done to further diminish the spot? It’s bugging us a little that it’s just sitting there seemingly taunting us month after month.

Luckily, Max was on the nifurtimox trial so we have the added benefit of another oncologist – and NB specialist – to review his scans. Dr. Sholler suggested zapping the spot with another round of radiation could very well take him to NED status again (NED = No Evidence of Disease). I spoke with Max’s main oncologist (the extremely helpful, knowledgeable, and patient-with-neurotic-parents-who-email-him-daily Dr. Roberts) who spoke with Max’s radiation-oncologist about the possibility, and it looks like it is definitely doable. We’re now just waiting for an appointment time.

So, yeah, NED. What awesome news. We’re saying prayers, crossing our fingers and toes, wishing on stars, shaking chicken feet over Max while he sleeps… looking for good vibes!


Anonymous said...

I've been praying and praying and praying! Such good news! Hope that radiation just blasts that NB off the planet, and you all can join Sam on Cloud 6. NED: my new favorite 3 letters (after MAX, of course!).

Anonymous said...

YAHOOOOOOOOOOO!!!!!! Such awesome news!
=) Debbie

Anonymous said...

Yeah Max-
You show that nasty NB spot who's the boss! I hope the appt gets set up soon and you can start working your way up to higher and higher cloud levels:)

Anonymous said...

Yea!! The power of prayer and a positive attitude! Way to go Max...just keep blasting those NB into the atmosphere! Linny

Anonymous said...

I had google'd Nifurtimox and found myself reading a mirror of my son, ryan's blog. We are pursuing Nifurtimox as one of his options. I am hoping for great results from early pioneers like max. I really appretiate all of your straight talk and info!!
Our very best to you all,


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