**update 3/30 8:21AM: looks like we can administer Gemzar and radiation at the same time, so that makes for a much clearer path forward**

At a little after 8pm tonight, Melissa brought Max down to Children's as the pain med (Lortab) wasn't doing the trick. I cannot tell you how frustrating it is to see your child cry in pain and know that you can't rub it away, that no amount of natural endorphins will take over and make the pain go away. He will receive morphine tonight while coming up with a pain management plan that works.

Max's catecholamines continue to climb. Not a good sign. Last Monday they were VMA 37 and HVA 42. His neuroblastoma is likely progressing. However, other markers which help to measure metastatis, are either normal or falling.

Clearly, the irinotecan/temodar combination isn't working. Not entirely surprising but deflating nonetheless. Plan B (maybe should have been Plan A all along) is to try Gemzar/Velcade. The trouble with this combo is that we can't give Max radiation (to his legs for example) while he's receiving Gemzar. So it's an 'OR' solution versus an 'AND' solution. I hate 'OR' solutions in cancer. Another possibility may be to go back to his old standby cytoxan for a week or two while we radiate his femurs to take care of the pain. The problem with cytoxan is that is what gave him the bloody pee not so long ago.

Max continues to take:

Gemcitabine (perhaps starting on Thursday)
Velcade (perhaps starting on Thursday)
Nifurtimox - oxidative stress
Zometa - increase bone density
Rapamycin - mTOR inhibitor
Tetrathiomolybdate - lowers IL-6
Genestein - AKT inhibitor
Celebrex - COX-2 inbitor
Glutamine - for Celebrex (gut protection)
Skullcap - lowers IL-8
ImmuniKinoko/AHCC - elevates NK funtion
Tauroxicum - lowers IL-6 and c-reactive protein
IP6/Inositol - lowers plasma VEGF
Super biocurcumin - lowers IL-6
Zinc citrate - lowers ceruloplasmin
Calcium - For Zometa
Vitamin D3 - For Calcium


San Diego Mom said...

Nothing is more heart wrenching then hearing your child cry in pain. How much would you want to trade places!!! Melissa was telling me how the morning started good. Such up and down must be one of the hardest aspect of your fight against NB. I will pray that Max get a relief from pain and you will receive peace of mind. Shiho

deb schwedhelm photography said...

oh NO!!!! i'm so sorry and sad to hear that max is having so much pain :-((((

i hope that he has some relief (lots of relief) soon. you all are in my thoughts and prayers.

of course, let me know if you need me for ANYTHING! i do make him laugh hysterically...you know.

many hugs,

Randee said...

I am so so sorry to hear Max is in such pain. I wish there were more words to convey how this heart hurts for what Max and his family goes through every hour of the day. I am praying--and will continue to pray!! Love you guys!!!!

Anonymous said...

I love your little guy and will continue praying for him and this battle he is in. As a grandma of 10, it breaks my heart and at the same time I love little Max so much. He is such a fighter and I know God has special plans for him. I am fighting along with him often in prayer. Please hug him for me.

Erin Newman-Smith said...

Poor guy! I am so sorry that Max isn't feeling well--for his sake as well as for all of you--it is so hard to hear your child or sibling cry. That is great news that you can give Gemzar and radiation at the same time. Not having to chose one over the other is great. I hope Max tolerates them well, and feels soon better! We think of you often!

Cousin Erin

Anonymous said...

So sorry for Max and very sorry for you Missy and Andy as I know this just sucks for your guys having to watch you sweet boy go through all this. Hurry home pain free!!!!

Anonymous said...

We cringe while reading the blog. But then we see the smilin' pics of Max and the kids. OUr thoughts ns prayers are always with you, daily, hourly.

Love, Kevin and Reba

Anonymous said...

There is nothing worse than to see your child in pain..even from a small fall ..the feeling of helplessness is overwhelming...My deep and sincere prayers go out to you both and of course Max...You are in my every thought...xo Linny

Unknown said...

Melissa and Andy,

We continue to pray for Max and for all of you. We have him on the prayer list at church and have forwarded Randee's emails to many, many friends and family who are praying for him and for all of you too.

I can't even begin to imagine what you all face day by day and admire your strength and courage as you continue to try and find ways to fight this terrible disease.

Love and God's Blessings to each of you!

Char and Al Love

Anonymous said...

i'm so sad and angry to hear about max's pain. this just sucks. i'm back in ny after 2 days in sd. everywhere i went i thought of you and max, as i continue to do thousands of miles away. praying for relief for your wonderful boy.
be strong.
toby pannone's mom

Anonymous said...

Thinking of and praying for you all continuously. Missing Max's smile and sparkling eyes. Hoping he will soon be all smiles again. xolisa

Anonymous said...

Just me again checking in and want to tell you guys that there isn't an hour that goes by that I don't stop and think of all of you.

Sheri K said...

Nobody should have to deal with this monster! I am so sorry. Max you are my HERO!!!! I am praying for you!!!

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