Gone to Vermont!

Max, Daddy & Papa John are on their way to Vermont for the second part of Max's nifurtimox trial. They'll have tomorrow (Jan 1) to play in the snow, and then it's off to the hospital for five days of chemo. Outpatient, of course. Max will also have an MRI and bone marrow aspiration for the study while there. They'll be staying at the Ronald McDonald House again which is so great for Max. Very homey.


Kid Friendly Site for Max's Friends

Hey - we've made a kid friendly site for all of Max's friends to see what Max is up to when he's not at school. It'll be lots of photos and a little narration. Enjoy!


Some pics from Christmas

Saturday, December 23 at the park.

Christmas eve at the cousin's house in Alpine, 30 mi east of San Diego.

Max was feeling a little sick on Christmas morning and so hence the sheets over the couch... Max asked Santa for a Star Wars laser gun and the big red guy delivered.

Max at Powerhouse park/beach on Christmas Day after playing in the sand with sister Hannah - one of the best therapies in the world as far as we're concerned.


Update with last scans

A little different post here than normal, notes below from a call last week with Max's oncologist which should prove informative to some y'all. These notes are regarding current scans and treatment plans that max is currently on.

12/8/06 MRI
a. Spine appears to be lit from top to bottom in addition to the two original localized spots. (T11 and L2).
b. Second cycle of chemo may not have taken effect at time of this scan. Normally do not look this early in protocol at scans. Slight possibility that cells are “exploding” and then look enhanced.
c. With new MRI showing less diffused, have to interpret as positive for cancer.
d. Raises question “can there be more elsewhere?” MIBG scan ordered to see what shows up.

12/8/06 Bone Marrow Aspiration
a. Shows positive for cancer cells at about same measure as previous aspiration taken 10/20/06. Small focus of cells there each time.

a. Still using low dose 20 grays for radiation on entire spine.

Bone scan
a. Results from 12/21 bone scan show no difference from previous.

a. MIBG scan scheduled for 12/28/06

Nifurtimox Trial
a. Length: trial will last through three chemotherapies. After which Max is eligible to receive the drug for as long as necessary.



Just a quick pic of Max getting his latest MRI.


Home from Vermont

Max, Nic, Aunt Randee and I arrived back in sunny(?) San Diego Saturday morning 12/16.

I didn’t mention before that my sister, Randee, joined us on the trip to babysit Nic while Max & I were at the hospital. They had a great time bonding and Nic is now completely spoiled from taking 2-3 stroller rides daily. The Ronald McDonald House was only one block from the town center and they explored it thoroughly. Max and I were able to join Nic and Randee Wednesday on their exploits. We took to the 45 degree, rainy streets and walked about one mile to Echo http://www.echovermont.org/ a science center and aquarium centered on Lake Champlain. The boys had a hoot looking at all the fish and turtles and playing with all the exhibits. We followed that up with a late lunch at Ben & Jerry’s (yes, they serve more than ice cream).

Thursday found Max back in the hospital for Day 2 of the trial. Same routine as Monday: take a pill, have your blood drawn all day between Nintendo games. Don’t get me wrong! We did do some school work, read a few books, saw Santa touch down outside in a helicopter, had a one-on-one meeting with the fat guy in the red suit, yadda, yadda, yadda. Typical hospital stuff.

Friday we took to the roads in hopes of locating snow. No luck. We did, however, locate the Ben & Jerry’s Factory! http://www.benjerry.com/ Huh? How ever did we find that? We took the tour, had a special sample they were making that day, bought some stocking stuffers… the usual.

And now we’re home. Thank goodness. It was a long way to go to get a bottle of pills and get blood work done. Nonetheless, we’re hoping for the best from the Nifurtimax. It’ll be more than worth the 16 hours of travel when it proves itself.


Greetings from the Northeast

I would say greetings from the great white north, however, there is no snow her in Vermont! We arrived late Sunday night to a 1-2 inches of snow blanketing the ground, but the weather was warm enough the next day that it all melted away.

Max spent the entire day, Monday, in the hospital for the start of the study for Nifurtimox. He took his first pill in the AM then had his blood drawn every hour to track the toxicity levels for the rest of day practically. Max is now taking the nifurtimox three times daily. He's a champ and swallows the pills with a little apple juice, then he gets a Hershey's Kiss. Day one involved lots of bribing with Hot Wheels and I began to think this was going to cost a fortune in diecast cars. However, Max pulled yet another rabbit out of a hat and showed endurance and ability beyond his years! Chocolate's better any day of the week anyway!

Tuesday we had a morning appt for Max to receive his first blood transfusion this go-around. His red blood cells had dropped from the last chemo and he was getting a little pale, tired and irritable. This afternoon he was nice and rosy-cheeked and in good spirits.

Tomorrow we have the day off. Max plans on doing a little shopping (for himself) and getting some vitamin sunshine. It was clear and beautiful today, so we're hoping for more of the same tomorrow. Thursday will find Max back in the hospital for the day for the study. It's not such a bad deal as Max has found the Nintendo and fallen in love with Super Mario Racing something or the other. It certainly makes the day go much faster for him. Friday we have the day off again -- guess we could've flown home a day earlier! Perhaps we'll rent a car and take to the mountains for a little sledding! We brought our snowsuits and boots and can't wait to try them out.

Oh! I don't want to forget to mention how awesome the Ronald McDonald House is here. http://www.rmh-vermont.org/ It is so wonderful. Each night someone from the community has brought dinner for the guests here, Last night we had pasta with meatballs and salad. Tonight a girl scout troop made beef stew, buns, and decorated Christmas cookies. There is a constant supply of baked goods and the refrigerator is always full of food. The volunteers are so friendly -- and so are the other families who are staying here. You just wouldn't believe it.

We'll post more later this week and photos when we get home.


Nifurtimax clinical trial

Max left today (Sunday 12/10) towards Burlington, Vermont for the start of a P1 clinical trial that offers the drug Nifurtimax, an antibody drug, that has shown promise in some VERY preliminary applications on children with recuurent neuroblasoma.

More posts soon as Max went in for his first set of scans (CT, bone, MRI) this week.



Just had to share this picture of Max (left) and his buddy Sam (also with neuroblastoma) in clinic yesterday. They look like some soccer (sorry, football) hooligans about to make some trouble after an Arsenal-Manchester game at Emirates stadium. Instead, they're just some nice boys playing Nintendo (phew!).

Hair loss

Thanksgiving day after first course of chemotherapy.

December 2 during second course of chemotherapy.
We had Max's hair cut after Thanksgiving and before going back to school to try to lessen the shock to his friends of the hair loss we knew was coming, and also so his the hair falling out was only 3 inches long instead of 10.

December 3 after realizing that hair was coming out all over.

Max was actually excited to get his hair cut off. He like it and thinks it feels like a porcupine or armadillo... smooth one way, rough the other!


Chemo #2 Started

Be flexible. That's what we learned last time Max was being treated for cancer. Friday morning 7:30am we were able to put our flexibility into high gear. Max's doctor wanted Max to start his chemo Friday in order to meet some guidelines for the Vermont Study (see nov 22 post).

Needlesstosay, it was a whirlwind of a morning! Hannah went to school with our neighbors, Papa John drove down to stay with Nic all day, and Max and I were at the clinic by 9:15 -- we even packed toys, games, snacks, and lunch! It ended up being a 10 hour day. Blood counts and doctor check have to be done before chemo can be started the first day. And the clinic treatment room was filled with kids getting chemo, blood, etc. I've never seen the nurses so busy.

Max and I were playing cards at one point during the day and he had me shuffle the cards so they blew air on his head. When I pulled the deck away I noticed a few strands of hair had come with. Looks like his hair loss has begun. He doesn't seem in the least worried about it. He's so amazing.

Andy & Max are at the hospital today. Max was hooked up for fluids at 10am, but the chemo wasn't ready to be hung until 12:45. They were able to leave at 4:45. "I'm outta here," said Max. And they were!

It's really cool to be able to come home each day after chemo, eat dinner together, and sleep in our own beds. Then start the new day together as a family, too.

Max's second round of chemo will end on Tuesday. Pending his blood counts he may be able to go to school...? We'll see. He's also scheduled for a CTscan, MRI and bonescan which will make that even harder to achieve.