Sat 1/26/08 - Max Home!

Whew! Max's blood counts were A-OK and he and Andy were home 2 1/2 hours after they left. He still has a fever and feels very yucky, but he's home in his own bed. Good night!

Sat 1/26/08 - Max to the Hospital

Max spiked a fever this afternoon of 103.7 which means he has to go to the hospital to make sure he's okay. Okay being that his blood counts are still high enough to fight the foe causing the fever. If the counts are low (making him neutropenic) he has to stay inpatient and receive IV antibiotics for as many days as they say is neccessary. Sheesh - we haven't had to do this for along time!

Andy headed to the hospital with Max around 3:00 this afternoon with an overnight bag just in case. They will go directly to the oncology ward, have Max's blood drawn, then wait for results. I hope they'll be home soon.

Matthew, Max & Jack ready for a superhero mission.

Where's Sam and Max?

Bob Burnquist (aka, owner of the world's largest skateboard ramp), has invited Max and Sam to Fallbrook to hang out during one of his backyard ramp sessions. Click on the videos to get a sense of the size of this thing. Upon viewing it, Max declared, "are we going there today?"

Soon.

Thanks, Daniel for your sense of humor in making this video, and Lisa for putting up with him!

How is Max?

We never did touch on the official results of Max's last scans. Andy & I were able to speak with one of the radiology doctors and look at the scans with him and Max's oncologist. It appears that nothing has changed.

The spot is still there.

It hasn't increased or decreased in size. It's just there.

With Dr. Roberts guidance weve decided to ramp up treatment a little and add topotecan (chemo) to Max's diet. He's been on this drug before and did well with it. We're not sure if he'll take it orally or IV. Max has a clinic appointment tomorrow and we'll find out then.

We are disappointed the radiation Max received in October didn't do more. I think I was hanging on to this notion/hope/wish that the radiation was going to take care of that spot and the scans would show a much smaller spot or nothing at all. But it's still there.

On a lighter note, Max is weighing in just shy of 50lbs! He's a little fatty now! His legs are all filled out, he has a belly and his spine and shoulder blades don't stick out. He looks great and feels great. He gets the Nutren Jr. formula all night a 2-3 times per day, plus we finally got our act together and figured out how to get those veggies into him without cooking, grinding, puree-ing, and straining them to make them go through the IV tube: Juicer. Duh! It hit me in the head like a bag o' carrots last weekend as I was throwing out the last batch I had made that was going bad in the frig. We picked up a juicer that day and love it! The kids have a blast with it, too. Max's buddy, Jack, helped and tried carrot/broccoli juice. He liked it! (blech)

Max is in a taekwondo class which is perfect for balance, coordination and aggression. Nothing like punching and kicking air for 90 minutes to clam a six yr old boy down. And he loves his white jacket and pants. Cub Scouts is going great - another cool uniform to wear.

Overall, Max looks great and feels mostly good most of the time. He still had problems with throwing up; we think he has a super sensitive gag reflex more than him feeling nauseous. He enjoys running around a lot more and doesn't tire out so quickly.

Hearing Aide Found!

What are the chances? Amazingly enough Nicky had nothing to do with the disappearance of Max's hearing aide. I found it in one of the many treasure boxes Hannah keeps on top of their dresser. It had fallen through a small hole in the top. Whew! 6 1/2 days of torture is over and we're all happy!

Isaac Lieser

Isaac became an angel today. He was trying to get on the Phase 2 nifurtimox study but infections and complications prevented him from getting to Vermont. Please visit his site if you wish to and pass along some words of love and hope to his family.

http://www.caringbridge.org/visit/isaaclieser

Hearing Loss associated with lost hearing aides

Well, I knew something like this would happen eventually. We have officially lost one of Max's hearing aides. (For those of you familiar with the cost of hearing aides you should exhale that Gasp! you just made before you pass out.)

I'm not totally sure about this story but this is what I think may have happened...
We're getting ready for school Thursday morning. Shoes on, hair brushed, jackets, check! Max and Nicky are squabbling upstairs about something (yes, a six yr old fighting with a two yr old). The two yr old grabs the hearing aide and throws it somewhere because he's mad a the six yr old. Let's go you guys - to the car! Finally, they're all buckled in (or strapped down - which ever you prefer) and I have to run back in for the hearing aides. Hmmm, there is only one here on the dresser. That's a problem. Run back downstairs to the car, "Max, there's only one. Do you know where the other is?" Max, "No." That's helpful. "Nicky, did you put Max's hearing aide somewhere?" Nicky, "Yes." Ok, get him out of the car to show me where the thing is. He says in the trash in the upstairs bathroom and under the red chair in the family room. Ugh - gonna be late for school. Back to the car. Here Max just put this one in for now and I'll bring the other when I find it.

It's been four days, the cleaning lady has been here and looked for it, I've dug through our trash FOUR times and even went through the vacuum bag, I've emptied drawers... the damn thing is gone. I'm short of breath just thinking about it. And I'll tell what's gonna happen: we're going to buy a new one and the lost one will show up.

Any audiologists out there who can cut me a deal on a high-end hearing aide?

Article about hearing loss & neuroblastoma patients

This article was published in Pediatrics - the Official Journal of the American Academy of Pediatrics: Hearing Loss, Quality of Life, and Academic Problems in Long-term Neuroblastoma Survivors

I thought it was interesting as we are already trying to help Max in every way we can with his schooling. Max's hearing loss is small. He can hear without his hearing aides, however, it is almost impossible for him to differentiate between sounds like B P T G D and the like without his aides on. He also has trouble with the TH and F sounds verbally, which they hit on. It's a bit lengthy, but if you're interested you can skim through it pretty quickly.

Never, never, never give up!

Miss Lisa Sturt - Max's teacher - wrote us a wonderful letter accompanying the gift that she gave us for Christmas. The gift is something we'll always treasure - a silver paperweight with the simple phrase engraved on it, "Never, never, never give up!"

More significant is the letter that accompanied the gift - the story behind the gift. I thought that her letter was so perfect in capturing the spirit and essense of our fight, that I wanted to share it with everyone. Lisa graciously said yes to my request, allowing her inspiration to reach the greater family that follows Max's battle against NB via this blog.

Christmas 2007

Dear Andy and Melissa

When my dad was fighting his own battle against cancer, he adopted one of Winston Churchill's famous remarks as his motto:

Never, never, never give up!

It is widely believed that Mr. Churchill in addressing the boys at Harrow school, stood up, said these five words and sat back down. And while that would have been very impactful, the truth is he did deliver a full speech. I've copied some of it below as I feel it embodies what you are doing with the Magic Water Project and to give you encouragement to continue in your battle for precious Max:

(The speech was made 29 October 1941 to the boys at Harrow School.)

You cannot tell from appearances how things will go. Sometimes imagination makes things far worse that they are; yet without imagination not much can be done. Those people who are imaginative see many more dangers than perhaps exist; perhaps many more than will happen; but then they must also pray to be given that extra courage to carry this far-reaching imagination...

Never give in. Never give in. Never, never, never, never -- in nothing, great or small, large or petty -- never give in, except to convictions of honor and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy.