New Week, same stuff

He had a clinic appt Monday morning for CBCs. His red blood cells were low, so he stayed for refill (transfusion). We were prepared to stay and had lots to do including gluing a wooden tank together, playing battleship, and laying around watching TV. When Max's reds are low so is his energy level. We'll that all changed once the transfusion was complete. That kid came alive, I tell you. He did a "happy dance" and song about having his port de-accessed. He talked all the way home in the car and continued to talk (non-stop, I kid you not) until he went to bed that night... 5 hours. You couldn't shut him up. He even joked around about taking his medicine and getting his shot. (If you recall, Max has to receive 1 shot in the leg each night for 10 nights following chemo to boost his white cells.) The boy was on fire. What a hoot!

Tuesday morning he had his last radiation appointment! Hooray. Hopefully it did it's job.

He spent the rest of Tuesday at school and is there again today - for the whole day! He's so happy to be there.


Chemo Round IV

Max did get to start his 4th chemo treatment on Monday. His platelets more than recovered from the previous week and he was off to a great Monday start. Also received the results for his bone marrow biopsy from last week - no disease in the marrow. Love that news.

The days are definately long this week: stopping in La Jolla for radiation first, then heading down to Childrens for chemo. Somehow we've managed to get out of there before 5:00 each day. (Much thanks to all the nurses! Those gals rock.)

Max had two fun visitors this week: his very own kindergarten teacher, Ms. Weitz, has stopped by twice to tutor Max in some of the school work he has missed out on this week! The poster in the background was made by all his classmates.And, a hometown hero here in San Diego: Trevor Hoffman (famous closing pitcher for the San Diego Padres). Ol' Trev stopped by with a few friends to drop off autographed baseball caps to Max and his buddy, Sam. Ok... he stopped and talked to all the other kids, too!

Max is feeling good this week. He's a little tired. I'm sure that can be contributed to several things: lack of activity, radiation, chemotherapy, boredom. His attitude is great, however, and he's been a pleasure to hang out with everyday - as usual.


Chemo #4 comin' up...

Max is scheduled to start his fourth round of chemo tomorrow (Monday, January 22).

He'll start his day with an 8:15am radiation treatment at the UCSD Cancer Center, followed immediately with a CBC panel (blood counts) at Childrens. Provided his blood counts are a-okay (which is a big question this time), he'll get hooked up to the drugs and start his next five-day-whirl-wind-tour-of-chemo. His platelets were low this past week so we're crossing our fingers that they've recovered enough to start chemo tomorrow. If his counts are low we'll try again on Thursday.


New Scan Results & Radiation Report

As per Wonderboy usual, Max is responding with no obvious side effects to this radiation treatments. He's halfway through the treatment with 6 appointments to go. When his tech's come out to get him, he marches right in by himself and is back out in less than ten minutes (which includes taking his shirts off, getting set-up on the table and then redressing when the radiation is finished). I did start giving him zophran (anti-nausea med) starting Thursday. His appetite seemed to be dipping a little following the radiation... and that's about the last thing he needs!

The Megace (appetite enhancer) seems to be working already. He's certainly not hungry all the time, however, he is saying, "When's dinner gonna be ready? I'm really hungry!" What music to our ears. Of course, then I have to make something he'll actually eat. Currently, boxed Mac & Cheese and Cup O' Noodles are tops on his list; bottom on my list for any nutritional value and protein content. I'll find something that makes us all happy eventually.

MRI & MIBG Scans
Max had an MRI and MIBG this week. His MIBG scan looks exactly the same as the previous - no increase in uptake but no decrease either. His MRI shows more enhancement than the last (which is not what we want to see), however, when comparing the two scans if there were more disease the MIBG would show more uptake. It's very complex and hard to explain, but we're having a leap of faith that what we're seeing on the MRI are cells being killed, not cells growing. (Scans are not typically taken at this point in the protocol, so the doctors are trying to interpret data that they don't usually look at. Max is having all these extra scans for the nifurtimox study.) At some point this conflict in scan results will need to be resolved: all scans need to show a decrease in disease.

VMA & HVA Levels
This is something we haven't mentioned before but plays an important role in tracking NB. These are catecholamines that are traced in the urine and elevate in children with NB. On his chart the levels started going up dramatically about the time he recurred and was diagnosed. These levels are steadily going down, which also supports the belief that his disease is decreasing.


OK, if you REALLY want to help...

Andy & I know you all love Max and want to do something for him, and because of that Max is receiving lots of great stuff from everyone - too much stuff. We're having some issues on the home front due to it. wink ;-)

We thank you for all your thoughtfulness and caring. We know you all want to help Max in some way, however, the gifts, the money to buy a book for himself, the new clothes... it's all a little overwhelming for a five year old boy! (Stop it, and I mean it.) (I'm not kidding.) (Stop looking at me that way!)

"Gee," you say, "I really want to do something for this great little kid. I really want to help!"

Well, we say you still can. You can do something that could stop neuroblastoma in it's tracks and help Max get through this battle and into adulthood. Please make a donation in honor of Max to the Penelope and Sam Fund. We have chosen to support this fund because the research and trials being done through it are multi-agent studies: they utilize drugs that have been shown to work against NB while adding new agents to the mix to hopefully get better results.

The Penelope and Sam Fund was set up by the parents of Penelope London and Sam Hutchison (Max's Nintendo buddy) to fund new treatments for relapsed neuroblastoma. The research is being headed up by the amazing Dr. Giselle Sholler at The University of Vermont. The fund has already made possible a new clinical trial for Nifurtimox (which Max is on right now). We are deeply grateful for any and all donations. Please know that no donation you can make is too little. 100% of your money will go to researching (not a salary) and beating this nasty disease. All donations are tax deductible. Thank you from Max and all kids fighting nb.

You may make your check payable to:
Penelope and Sam Fund
c/o Rick Blount, Assistant Dean for Development & Alumni Relations
The University of Vermont College of Medicine
E-100 Given Building, 89 Beaumont Ave.
Burlington, VT 05405
Voice: 802-656-4405/ Fax: 802-656-5788


Lots Going On...

At Max's clinic appointment on Monday 1/8 we spoke with his oncologist about school and when we should keep him at home due to low blood counts (ANC). (If Max gets an infection that results in a fever he will end up in the hospital getting IV antibiotics for 10 days. When his ANC drops this is a distinct possibility.) The doctors' feeling was that even when Max's ANC is low it is much more likely that if he were to get an infection it would be caused by a virus already in his body and not by a runny-nosed friend at school. So this great news... Max can go to school much more often than we were expecting. This is such a great relief for us - and for Max even if he doesn't know it - that he will be able to keep up his social activities with his friends. Along with medical health, mental health is so important!

We started Max on an appetite enhancer, Megace. You'll see in the radiation photo below how thin the boy is! He weighs a whole 37lbs. It will take 2-4 weeks before we start to see a change in his appetite. We can't wait.

We're also looking at adding something called a bisphosphonate to his treatment cocktail. It's a bone strengthener used commonly in cancer treatments and osteoporosis. Since the cancer he has right now is in his bone (and he's receiving radiation to his bone) we thought this would be a good addition. Max may need to wait until the Nifurtimox trial is completed before adding this, because there is also a trial on this drug testing the theory that it may make bones stronger which then makes it more difficult for cancer cells to attack said bone (this is my layman's explanation - don't quote me!). Whether that's true or not we do not know, however, couldn't hurt, could it!

Here's yet another photo of Wonderboy (he's smiling in there!). Max just started radiation treatments at the Moores UCSD Cancer Center in La Jolla. He'll be receiving 12 treatments, 12 days in a row(excluding weekends!). The making of this mask was quite possibly one of the most amazing feats Max has pulled off. It starts off as a flat screen. The tech warmed it up in water then stretched it down over Max's face and head and held it there for 15-20 minutes while it cooled and hardened. Max just laid there and did it. No biggy. Of course, I just carried on like this was an everyday event (all the while I thought my eyes might pop out of my head wondering when he was going to reach the end of his rope). Now Max wears his mask everyday for his radiation treatment for about 5 minutes. He lays on the table, puts on the mask and the "guys" get the sharpie marks drawn on his body lined up with the lasers. Then everyone has to leave the room and Max receives the radiation in there all by himself. I even have to wait in the lobby! He comes out all dressed and smiling. Unbelieveable!

Next week he's scheduled for an MRI, bone marrow aspiration, and MIBG scan in addition to radiation. His next chemo is scheduled for 1/22 pending blood counts.



Let me clarify my early morning post below. Actually, the scan results from Vermont were mixed. The MRI results showed lesions at C2, T1-5, T7, T11 and L1 vertebrae. This is - characterized by Max's SD onc - as stable. However, Max will be having his whole spine irradiated starting on this Thursday and will go every weekday for 12 days.

Some progress...

We're back from Vermont. We got back to San Diego on Sunday, around noon, after 6 days away from home. Max was very, very happy to be home, see Hannah and Nic (and Mommy too of course!)... and play his Star Wars video game, 'natch.

Tuesday (1/2), our first day at the hospital, you'll recall that Max had an MRI and bone-marrow aspiration/biopsy. Well we just heard from Dr. Sholler, Max's onc in Vermont and the results of the bone marrow were negative! So we're happy to have some early indication of progress after 3 courses of chemo. Don't know if the Nifurtimox is helping or not and quite honestly am not going to worry about it too much... just like to see progress.

Below, some additional pics from Vermont. It was quite warm during the rest of our stay but Max still had a good time, especially at the ECHO center a few blocks away from the RMH where we stayed.


Vermont - round 2

Arrived in beautiful, snow-covered Burlington Sunday night - New Year's Eve - after a long day in the air. United managed to lose our luggage, leaving it at Dulles where we had transferred from the relative comfort of a UA 757 in Econo Plus to a Embraer regional jet.

Aboard the Embraer United regional jet.

United must've decided the little jet was too heavy as it was obvious why our "big" suitcase was left behind while our smaller two made it through. Of course, the big suitcase held Max's and my clothes so we were without a change of clothes the first night.... and of course Max wet himself Sunday night and I hadn't prepared for that, so he spend Monday morning - New Year's Day - pantless in our room. I have a picture of him playing on my computer that I would love to post as only another parent would appreciate it, but alas I'd probably have the San Diego Police child p*rn team at my house waiting for my return.

Max - in a "clean" photo of the situation I mentioned above.

We had Monday off but didn't do a whole lot... Max got a cool book on dragons at the downtown Burlington Barnes & Noble, one of the few stores open on New Year's. And so we spend most of the day fooling around the house, reading and generally doing “nothing”, which was nice, especially in preparation for today, Tuesday our first official day in clinic.

In front of RMH Burlington.

Today started off pretty good. Max was scheduled for an MRI and bone marrow aspiration, so he couldn’t eat or drink anything after 6am. We got the beautiful UVM medical center at around 7:30, early for our 8:00 start time but hopeful we could get going quickly. Didn't happen though we did start soon after 8am, only to find that our 9am MRI appt was bumped to 11am for some reason. So, Max played video games (they have a cool GameCube cart) and I tried to get organized and do some NB-parent work.

Hooked up for a neurological scan.

Max went in for his MRI around 11:15 and came out around 2:00 after full-body scan plus a bone-marrow aspiration + biopsy procedure on his pelvis. Nevertheless he recovered from the anethesia quite quickly and rose to eat his favorite post-op treat, popsicles. He was still so groggy while eating the popsicles he was having trouble getting them into his mouth, which was both quite funny and sad as the same time. NB parents reading this realize this funny/sad dichotomy happens quite often, and its part of the challenge to embrace both the good and the bad, sometimes at the same time, as it happens.

Eating graham crackers and popsicles while recovering from anesthesia.

The rest of the day was pretty uneventful. The staff at Children's Specialty Center (the outpatient infustion clinic in other words) worked very hard and effectively to get Max out at the scheduled time of 4pm. Tonight, Max ate oranges for dinner. His first time eating an orange and he ate four of them tonight! Actually they're those clementine tangerines that are so yummy and easy to peel. Nevertheless, he's hooked which is great for us and for him!

Finally, after MRI and bone marrow aspiration, chemo and Super Mario Cart Racing on the GameCube.

Tomorrow will be an easier day. I'm going to make Max a giant batch of pancakes for breakfast, as some people here say Vermont has good syrup, whatever that means... I thought Aunt Jemima was from the South...