So, what do we do?

Note: this post is a combination of both Andy's and Melissa's comments and writings, interlaced together. Best if you don't worry whether you think Melissa is making Iraq war analogies, or if you think Andy is writing about himself in the third person (as I am right now but not below).

Andy & I were able to meet with Dr. Roberts, Max's oncologist on Friday afternoon to discuss treatment possibilities. Of course, there is no protocol for how to treat Max's neuroblastoma any longer - again we had "the discussion" as to whether or not we wanted to do anything at this point. And again, we agreed on a course of aggressive, but smart (ie, managed toxicity) treatment. Or to put it into the War in Iraq analogy, we're trying to kill as many insurgents while minimizing civilian casualties. Not an easy job either way. But whereas the value of fighting for Iraq is questionable, the value of fighting for Max is unquestionable. I can't see how a reasonably logical person could think otherwise. So, we're fighting.

Let's be clear. There is no cure, there is no established route to success. Our goal in this effort is time - time that extends our chances of finding something that is curative, or guaranteed to stop the disease for the long-term, and which his body can tolerate. So we have to keep him here, and we have to keep him healthy. In other words, we don't have to kill the enemy, just contain it. If we can do that with acceptable toxicity (such as we had for the better part of the last 16 months), we'll have succeeded in our goals.

The MIBG scan indicates both bony and soft tissue disease (soft tissue we think in lymph nodes near the heart and in his pelvis). A CT scan has been scheduled for 4/1 to hopefully give us a better idea of where the bony and soft tissue disease are. Max still has the urology consult appointment 4/1 after which we'll see if the doc there can make quick with the cystoscopy and tell us what's causing the blood in the urine.

So, what do we do?

First, we're taking Max off the topotecan because it appears that he progressed while on it. We'd like to put Max back on cyclophosphamide but can't if the bladder wall is damage by it.

For those of you interested, here is what Max is currently taking daily. Much of this is directed at stopping metastasis. IL-6/8/10, c-reactive protein, ceruloplasmin, VEGF - all are blood factors associated with angiogenesis and metastasis.
  1. Glutamine-gut protector
  2. Nifurtimox-trial drug; weakens NB cells
  3. Celebrex-cox-2 inhibitor; anti-inflammatory
  4. Skullcap-lowers IL-8
  5. Genistein-hormone blocker used in breast cancer
  6. Prevacid-stomach upset
  7. Promethazine-anti-nausea
  8. Zophran-anti-nausea
  9. olive oil-fat & calories, omegas
  10. ImmunoKinoko-increases NK cell function
  11. Vit D-aids in calcium absorbtion
  12. Acidophilus-immune health
  13. Melatonin-G-MCF stimulator
  14. Bromelain-platelet stimulator
  15. Calcium Citrate-calcium boost for Zometa infusion
  16. Milk Thistle-liver function
  17. Tumeric (curcumin)-anti-inflamatory (also makes Celebrex more effective)
  18. Shark Liver oil-platelet stimulator
  19. Fish Oil-omega 3's, fat
  20. Zinc Citrate-lowers ceruloplasmin
  21. Taurox- lowers IL6 & C reactive protein
  22. Cellular Forte w/ IP6 & inositol-lowers plasma VEGF

Andy and another neuroblastoma Dad are using this weekend for some R&D on what Max's treatment possibilities are. Some clinical trials are a possibility, most likely we'd come up with our own mini-trial which is nothing other than a unique combination of agents suited to Max's individual needs. We are not limiting ourselves to facilities on the west coast and have told Dr. Roberts that we will do whatever takes, go where ever we need to go.

More on next post including possible agents/trials we might use, and which will be discussed during a conference call Tuesday with Dr. Roberts and Dr. Sholler.


Anonymous said...

Your daily updates are much appreciated as Max is my first thought in the morning and my last thought at night (and most of in-between). I know he has the absolute best team behind him (which I am so thankful for), and I pray for you all to have discernment as you decide which treatment path to pursue. I am with you and Max in this fight and will do anything to help. xolisa

Anonymous said...

What a lucky boy to have such amazing parents....God speed this life saving mission and may find you a solution for your sweet Max. I am praying for you each step of the way.

A concerned mom in Plymouth, MA

Anonymous said...

There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow. Know that I am deeply praying for a better tomorrow for Max. What ever you decide we will all support your very difficult decision that you have to make for Max. We are all in your camp! xo Linny

San Diego Mom said...

Thank you for the update. I've been coming back several times today to learn about your game plan. It must be hard to walk the path of treatment without any road map. I hope you will find in yourself courage and hope to walk that path. Melissa, if there is a need, I'm always available to watch Nick with Sam, either at your house or mine. Please keep that in mind.

Anonymous said...

Do what you must do... be strong in your fight. You have caring people all over the country praying for you. Max has come a long way and he will not give up now... nor will we... never, never never!!
Love, Nana

Anonymous said...

You both are so amazing....true warriors! I wish there was a way I could somehow lighten your load, take some of the tremendous pain off you shoulders. Since I can't, let me just say that my heart is wrapped around Max every second of every day. (i have never loved tutoring as much as I do every Tuesday with him!!!) I WILL NEVER GIVE UP! Hugs, Ms. Weitz

Randee said...

Our hearts are so burdened for all you have to go through in this battle and so amazed by your strength and resiliency. Just know we are here for the long run and will go anywhere and do anything you want or need us to do. Remember the offer for prayer is open and we would love to make the arrangements for you.

Prayer--Hope--Fight--and Never, Never, Never, Never give up.

Love with all are hearts,
Randee and Mike

Anonymous said...


Anonymous said...

I realize I am only one person, but I am sending my prayers. Prayers for Max, you, your husband, and all of your family that our Lord will guide you to where you need to be. I pray he will hold you tight in times of confusion and when you feel like no one is there. He is with you, even as you read this. I pray he will hear our request for total healing and bless your family with a miracle. I will continue to pray and ask God to fill your life with peace. BTW Max, you are one of the strongest little boys I know...I bet you already knew that!!!

Vickie said...

The bad words have been flying around our house since I read Friday's post. Max certainly does not deserve to face more [insert your choice of bad words here] NB and you do not deserve to have to ramp up the fight rather than enjoying your amazing family. I will pray for wisdom and strength for all of you as you begin making a new plan! Thank you for your willingness to pioneer.


Anonymous said...

I just wanted to let you guys know I was thinking about you all. After finally meeting Dr. Sholler, Dr. Durden and Neil I am feeling very positive about where Magic Water is going and hope that I can extend that feeling to you guys in even a small way in this tough time. You have some fantastic and brilliant people on your side and fighting for Max.

Anonymous said...


I just want to tell you that my thoughts and prayers are with you all. Max is an incredible boy. I still have the card he wrote Penelope. If there is anything I can do please contact me. I would like to help in any way possible. Hang in there.

John London

Anonymous said...

Hey you guys,
My mom just forwarded me an email "call to prayer" from Thelma. As I sit here & read your blog, tears roll down my cheeks & my heart goes out to you. I do have hope for Max, though, as he is surrounded by so many loving and caring supporters...doctors, nurses, family & friends. We have a big God & I have seen such miracles! I pray that Max would be one of those miracles. I also pray that He will give you the strength and encouragement to press on during this difficult time.
Praying for you,
Danita Martinez (Leanna's oldest daughter)

Unknown said...

Hi Max:

You are in my daily prayers buddy. And I have asked for extra Angels to protect you with their wings.


Erin Newman-Smith said...

I think of Max and your family constantly, and am inspired by your dedication-to Max, clearly, and to us in writing this blog. I hope the meetings over the weekend were useful and that you have a plan of attack-something new to try that will kill those insurgents and let your sweet boy enjoy his skateboarding! Fighting for Max is unquestionable. I wear his orange wristband, think of him and your family, and wish I could do more, much more. Stay strong.

Your second cousin, or first cousin once removed, I can never remember,

Unknown said...

Love from me and biggo long distance hugs,
Cuz Leanna in Rapid City

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