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

Radiation
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!

Megace
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
Rick.Blount@uvm.edu

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.

Clarification

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...

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!
http://maxmikulak.blogspot.com/

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.

Radiation
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.

MIBG Scan
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.

MRI

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.

Hooliganism?

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.

Max's Schedule

Wow. We just took a look at the treatment schedule last night for Max and how it's going to affect his school time. Sheesh. Here's a preview:

• Week of Nov 27: hopefully only missing school Monday morning for clinic blood counts.
• Week of Dec 4-8: Missing school to have his 2nd round of chemo.
• Week of Dec 11-15: Missing school to participate in study in Vermont (see previous post).
• Week of Dec 18-21: If blood counts are good he'll be in school (we're crossing our fingers!).
• 12/22 - 12/31 is Christmas Holiday. Max will have a few clinic visits to check his blood counts.
• Jan 1-5: Missing school to participate in second part of study in Vermont and recieve his 3rd chemo.

Max's spirits are high and he had a great Thanksgiving playing with Hannah and his cousins Alaina and Patrick for 9 hours straight. He is having pain in his back and legs which is causing some crankiness. We phoned the doctor today for some codiene to help him cope.

It's really hard this time to see him in any pain as we understand much better what's happening to his little body. I almost can't wait for the next chemo round to start in hopes that it will start killing off the cancer cells faster and relieve some of his pain.

Thank you everyone for your outpouring of love and offers to help us in way possible. Right now everything is as under-control as it can be. (I'm still changing diapers; Max and Hannah still fight; Andy goes to work everyday; etc!) When Max goes in for his next chemo I may be calling you for afterschool playdates for Hannah. Outpatient chemo apparently takes 8-9 hours each day -- but at least we get to come home each night!

I'd also like everyone to know that we are not too busy to take phone calls, we can take your kids to school with us in the AM if you need a favor, and playdates are welcome as long as Max's blood counts are up. We need to keep our daily life as normal as possible for ourselves and especially for our kids. Yes, we are dealing with a crisis. But you can help us get through this by staying close. Isolation is the worst thing.



Cousins Alaina and Patrick flank Hannah and Max on Thanksgiving day at our house.



Max and Patrick in Del Mar waiting for trains to come by.



Cousin Alaina with Max and Hannah's favorite playtoy, little brother Nicolas.

Max going on clinical trial

Max is going on a phase 1 clinical trial (for an antibiotic called nifurtimox) as part of his therapy now that the neurblastoma has recurred. There isn't much web data on this trial - that I can find anyway - as its just started as of Nov. 20. Melissa spoke with the principal investigator on the trial this morning and we're scheduled to start Dec. 11. The trial takes place at University of Vermont and Max has to be there for 5 days starting the 11th and 5 more days around Jan 1. Below is a post to the NBLAST list from a fellow NB-parent Neil Hutchinson who also lives in San Diego and whose son Sam has had a rough time with his neuroblastoma. We'll post more as we know more. Obviously this will be tough as Melissa and Max will have to go to Vermont for 7 days (I hear they have pleasant winters just like San Diego) and I'll keep things going at home. Perhaps Nic will go with Melissa and Max too and I'll stay in SD with Hannah and keep her on-schedule and in school.

Neil Hutchinson wrote:
"I wanted to post an update on the soon-to-be-open
nifurtimox/topo/cytoxan trial. The goal is to have
it open 11/20 in Burlington , VT and soon thereafter
in St. Louis at St. Louis University Med Center
(don't quote me on the name though). I think this is
good news for the list since it means travel
distances would be shorter. The way the trial works
is that the first 3 weeks are nifurtimox only and
starting with week 4, they add the topo/cytoxan. So
you do need to be in St. Louis or Burlington for
weeks 1 and 4 so they can observe any toxicities and
do pharmacokinetics (they're trying to measure how
much nifurtimox gets into the blood serum). Once you
have met the week 1 and week 4 milestones, you can
continue treatment at your home hospital as long as
your local oncologist agrees to communicate with Dr.
Sholller, who as the Principal Investigator for the
trial, will need to be aware of counts, scans,
toxicities being seen etc."

Photos from first treatment

Max's new port. Better than the Hickman catheter (tubes) he had sticking out of his body last time.






mmmmmm.... french toast... more like churros though.






Day 1 of 4 1/2.






Artwork by Max & Co.

Max home from first treatment

Just a quick post to let everyone know that Max came home Sunday (19th) night from his first chemo treatment. He did exceptionally well, as per usual, and tolerated all the attention, pokes, prods, squeezes, etc. with no fear and a smile on his face. His favorite part is (surprise) the playroom. Some good pics will be posted in the next few days. Thanks to everyone for their thoughts, cards, etc. Hannah spoke in front of her 2nd grade class to explain to them what was happening to Max, and the whole class created what must be the world's biggest get-well card. Also, Max's Kindergarden class all produced their own get-well cards which of course lifted Max's spirits greatly.

Max headed to hospital to begin treatment

Since it's Fall, it must be time for bad news from the Mikulak household. 2 years and 17 days ago Max was admitted to Rady Children's Hospital here in San Diego to begin treatment for stage IV, high-risk neuroblastoma. As you all know, he responded to treatment very well, and finished his protocol in close to record time, with almost no short-term side effects and only one major long-term side-effect which was some moderate-to-severe hearing loss in both ears forcing him to wear hearing aids. In relative context, we got off easy, we thought. As it turns out, the chemo, autologous bone-marrow transplant (stem-cell rescue as its called now), radiation, and retinoic acid didn't quite finish the job. So, the same cancer has come back - albeit in lesser form - but still to the point where Max will be receiving fairly moderate chemotherapy.

A key difference between this time and last time, is that this time we're venturing into the unknown, relatively speaking. That is, with Max's prior treatment protocol, there was much known about how to treat a newly diagnosed instance of the disease. However, if and when the cancer recurs, less is know about which treatment protocol produces the best outcome. So, we're entering this treatment with more-or-less a hypothesize-administer-measure-adjust framework, where we have a lot of options to consider as we determine what's working and what isn't.

Max is checking in tomorrow at 1:30P at Children's, and in the afternoon will receive a bone-marrow aspiration (1/8" thick needle inserted into the pelvic bone to remove a core of bone marrow) and will receive his new "port", through which blood will be drawn and the chemo drugs administered. As some of you will recall, last time Max had what's called a Hickman catheter, which entered his body just below his collarbone and which left about 10" of plastic tubing protruding from him. This required much maintenance and caution, since if the entry point got wet, or if the tubes got pulled, that would have been no good. With the new port, everything is subcutaneous and Max will simply have to endure getting slightly stuck with a needle to access the port. We'll see how that goes, but to-date he's been a tough kid when it comes to pain and so we're hoping this works for him.

CT No Help

Well, the CTscan Max had of his ribs was of no assistance to his surgeon. Didn't show anything that would tell her exactly what she'd be looking for, so she will not do the biopsy.

Max's oncologist is still very wary about the back surgery biopsy, so he is suggesting that Max have another needle biopsy of two spots on his spine. This is a fairly simple procedure that leaves him in very little pain. Last time he didn't even need tylenol at home. He'll have this procedure this week.

We're crossing our fingers that one of these show something or give us some clue as to what's going on in Max's little body. Should nothing come of these, Andy & I will have a consult with the back surgeon to find out just what Max will have to go through should the back surgery be necessary. We'll let you know...

3-Month Check-up

Since this blog is a little bit of a diary for us to look back on, I wanted to expand on Andy's latest post and review what has happened since July 2006.

Max went in for his regular three month check-up the week of July 17 (MRI & bonescan). Both scans showed that a spot had appeared on his spine somewhere around T11 (if you know what that is). His oncologist ordered a biopsy on the site. Max underwent a CTscan guided needle biopsy of the site, however, pathology came back negative for cancer. In this case, negative means inconclusive, because if it's not cancer then what is it that's showing up on the scans?

The best course of action for now was to schedule Max for an MRI every month to watch the spot and see if it goes away (hooray), or grows (bad). Max had an MRI in August and September and the spot didn't grow, but it also didn't go away. His next 3-month check-up was October. At this point, the oncologist said that if the spot is still on his spine we will need to schedule an open biopsy of the site to get a better tissue sample. This was going to be very invasive, as the spot is between two vertebrae.

So, Max went in for his three month check up on October 20. The original spot was still on his spine, unchanged. And now we have a new spot on a rib. Great. We're now waiting for a CTscan to be taken for Max's surgeon to get a better look at the rib so she can do the biopsy. We should be going in for all of this Halloween week.

As you can imagine Andy & I are pretty stressed out, but doing our best to keep it normal around the house for the kids. Max is feeling well, going to school, and having fun in general. Next week Max's class is going on their very first school bus field trip to an animal center and he's going to be Superman for Halloween!

Thank you for your prayers and thoughts.

Two years on Thursday 10/26... and some bad news.

It was two years ago this Thursday, October 26 that Max was checked into Children's hospital and subsequently diagnosed with neuroblastoma. Unfortunately, today Max had a bone scan and we learned that he has a second "spot" on one of his ribs, which warrants a surgical biopsy be done immediately. He is likely to have the surgey early next week, Halloween day or the next most likely. We'll post an update as soon as we know something, good or bad. In the meantime, here's a picture of Max in kindergarden at "daddy day" earlier this month.

Celebration of Champions

Max went this past weekend 5/27 to an event called Celebration of Champions put on for the patients and families from the Hemacology/Oncology ward at Children's Hospital.

Hair & soccer

Hair and lots of it. Curly too. Thought you'd all get a kick out of it, since Max's hair was straight before chemo.



Max playing soccer with his still-skinny legs.

Life Update; 3rd Scans Coming Up

Hello! Max is still doing great and has been busy as a bee the last few months. He finished up T-ball before Christmas and just started soccer which he really loves. His hair is growing like crazy and he's due for another trim. We're going for the "fade" which he looks great with especially with his hair coming in a little curly! School is the big highlight everyweek and he can't get enough of it. He's made some great little buddies this year in class (he missed out on that last year...). Max is a very happy little guy!

Max was fitted with hearing aides just before Christmas. His hearing was affected by the last chemo drug he received prior to his stemcell rescue. The hearing loss was expected; it was just unknown how bad it would be. It ended up being quite significant. He spoke very loud all the time and was unable to hear us most of the time. "What did you say, Daddy?" He confused a lot of the letters in the alphabet like P, D T, C, etc. The hearing aides are great and only amplify the tones that he cannot hear. Digital technology! He adjusted to them in one day and noticed the difference right away. He said, "I can hear myself talking now." He's now able to learn the sounds of the letters and his speech (which wasn't bad even before) is improving markedly. His hearing loss is not temporary and he will wear the aides forever.

Max just finished his last round of the retinoic acid! Hooray. We hated that stuff. Poor boy would have chapped lips from his chin all the way to his nose; most of the time cracked and bleeding, too. It caused him to be very moody and emotional, as well as several other side effects.

Max is scheduled for his third round of follow-up scans this month. He just had the bonescan this week and has his MRI and bone marrow aspiration next week. We'll post the results when we have them.

A few monthes ago Andy noted on the kids growth chart (our bathroom door jam) that Max grew about 4.5 inches from 12/2004 - 12/2005. Good thing he didn't lose any weight while he was in the hospital!

A year ago today...

Max checked into Children's Hospital San Diego for diagnosis of what we eventually found out to be his cancer. Today, he has his chest catheter out (last Tuesday), is doing great, cancer-free and back in school. It goes without saying that without the support of our families, friends, business associates - all whom offered their help and support in too many ways to list here - we wouldn't have made it through the past year in as good as shape as we did. So to everyone, thank you!

Great Scans!

Max had his second round of scans this week. MRI, CTscan and bone scan... and all came out clean. I guess we can officially say he's in remission! Wow. His next sest of scans will be in three monthes; beginning of January.

We will make an appointment next week with his surgeon to have his hickman cathiter removed. (His "tubes" as he puts it.) Max is looking forward to this like nothing else. He'll be able to take a deep bath, a shower, go swimming... even get dressed all by himself because daddy and mommy will not have to unpin his tubes from his clothes. No more daily tube flushes, and no more weekly bandage changes.

Max still needs to have blood drawn about twice per month to check his chemistry (he's on retinoic acid orally for the final part of his protocol) but he's been having this done in his arm like a big guy (with a little help from numbing cream)!

Hair growth and recent events

This post is really just an excuse to post some vacation pics that show how well Max's hair is growing in. Otherwise, everything is normal. He's taking his 13-cys Retinoic acid without problem. Being the stud that he is, he's also now had two blood samples taken via needle, which means that he's ready to have his Hickman catheter removed.

Here's a photo of Max at a train museum in Carson City, NV. See the hair?



And here's a photo of (l-r) Anna, Hannah and Max in the meadow on Mt. Rose.



Finally, Max and Hannah at Dland on the way home from Tahoe. All in all, a good week spent with each other!

Scan Results - Great!

Max received his MRI, CTscan, bone marrow biopsy and hearing test as scheduled on July 5.

All the scans and the biopsy show the cancer as dead. We can't say, "it's gone" because there is still a small (bullet size) portion of dead tumor tissue left in his neck that they don't want to try to remove - too invasive - and the scans show that it is dead. The pathology results from his bone marrow biopsy show no cancer cells.

Max will receive these scans and tests every three months for about two years to track the cancer and make sure it doesn't come back. Nueroblastoma is a very aggressive cancer and they don't take any chances with it.

Max showed a little loss in hearing at his hearing test. Mostly in the upper frequency range, but still within normal hearing range. We're going to take him to a hearing aide specialist and see what they can do for him. He has been displaying loss of hearing. Says, "I can't hear you. What did you say?"

He is in his final stages of the treatment protocol and is taking oral medication, Accutane (retinoic acid). 14 days on and 14 days off for 6 months. He still has to give blood for lab tests every two weeks, and currently still has his tubes (Hickman catheter) in his chest. We're going to try putting numbing cream on his arm and have an IV inserted for these blood draws and see how he fairs. We'll obviously explain to him that if he can tolerate the IV blood draw he can have his tubes removed. He's already asked when they're coming out, when he can take a shower or a deep bath, go swimming, play in the waves without having cling wrap all over him, etc.

We, the whole family, are enjoying only visiting the clinic every two weeks... and not being inpatient anymore! It's so nice to be home!

Radiation Complete!

Max is such a stud! He went to radiation for 3-1/2 weeks (17 treatments) and behaved as good as an adult! (Amazing what the promise of a few gummy bears can do to inspire your child!)

He made up his own routine of bringing a new toy each day to set on a shelf in the radiation room to look at, and always had a small toy to hold in his hands. He'd let the therapists get him all set-up, then we'd all leave the room for a few minutes while he received his radiation. We could watch him on a video screen (to make sure everything was okay) but he had no way to see us. The therapists and his radiation oncologist were quite impressed with him. There was never a hassle!

Tuesday, July 5, he's scheduled for an all day event at Children's Hospital. Max is checking in at 6am for: MRI, CTscan, bone marrow biopsy, bone scan, heart sonogram and a hearing test. The first four are to track the cancer and ensure that is dead everywhere. The heart-echo is to make sure the chemo he received didn't have any adverse effects on his heart (he's had two of these already). And the hearing test is to see what kind of hearing loss he may have suffered from the chemo; he's received two hearing tests as well. Hearing loss is a typical side effect of some of the chemo drugs he was given. As far as we can tell from being with him everyday his hearing doesn't seem to be to bad off. He may need a hearing aide for certain circumstances... we'll find out!



Max had a great 4th birthday party last month. He celebrated with three of his best buddies. We took them to the local firehouse to check out a fire engine! The boys had a blast, got to climb inside, put on firefighter equipment,and meet real live firefighters! At the end of the tour the Fire Chief asked them what they wanted to be when they grew up... Max quickly answered, "I'm going to be the trash guy!" I guess when firetrucks get a big claw-like arm that can pick-up big cans and slam them back on the sidewalk...

Max update - not much new

Max is doing well. Extremely well. Short of his lack of hair, and the catheter in his chest, you would never know he was just diagnosed with a life-threatening form of cancer 8 months ago. He's about halfway through radiation. By end of June he'll be finished. Then, another round of scans to confirm that the cancer's all gone. He'll then go on a therapy consisting of high doses of retinoic acid - vitamin A - for 8 weeks. Vitamin A in extremely high doses (much more than is recommended for healthy folks), when administered in conjunction with the stem cell transplant, has greatly bettered the outcomes for kids with this type of cancer.

Soon to come... photos with hair (maybe even close ups of eyebrows!)

Incredible writing

Click on the following link: Series running in S.F. Chronicle written by one of its copy editors recently diagnosed with cancer - great writing.

6/8 -- Radiation treatment update

Max is now undergoing his radiation treatment. This is an everyday application of a low (relatively) amount of radiation extremely focused on his tumor area, which is around the junction of his neck and shoulder, on his left side. The amount of radiation he is receiving is low enough (24 grays?) that he isn't experiencing any side effects, nor is he expected to be at risk for any long term health conditions as a result of this radiation. However, nothing is certain, as we have been taught buy this ordeal.

As usual, the bright spot everyday is Max's attitude and positive personality. He cooperates so well that he is one of the few young children who do not have to anesthesized during the radiation process. Instead, he lays still, as directed, while being set-up and during the 30 second timeframe when radiation is being applied and there is no one else in the room with him, or that he can see. What a stud!

Max's blood counts are doing so well that he's pretty much out of isolation, althought we wouldn't take him on an airplane or into a crowded theater, or anything so enclosed. He will be done with his radiation a day or so before his 4th birthday (6/30), and afterwards may get his Hickman chest cathetar removed. This removal would be great as everyday-beachtime is just around the corner, and his big sister Hannah is taking surf lessons this summer, and Max is sure to want to get out into the water, which he cannot do right now with his catheter still in him.




Max this past weekend; back to the grind in Del Mar...

Radiation Set to Start

Max's appointment with the oncologist/radiologist went pretty much as expected.

Max will get a very low dose of radiation over a very small area (what's left of his tumor) as insurance that the tumor is really dead. The doctor doesn't expect Max to have any adverse side effects like nausea or vomiting or fatigue because the area and dose are so small. The treatments will start on Monday May 30 and will happen daily for about 3 weeks. Each treatment will take about 5-15 minutes total.

Max will have a trial-run this Thursday to introduce him to the room and where he has to lay, etc. Most likely Max will not be able to lay still for the treatments, so he will get anesthesia each day. No one can be in the room with him and there are no windows for him to see anyone through. We'll see how he reacts, but I'm not sure even the DVD player will be much help!



Max wins Pretty-Pretty-Princess! Like those earrings?

Radiation treatment and update

We are going in today (Monday 5/23) to Moores UCSD Cancer Center to have a consult with the pediatric radiologist who will let us know what radiation they think is necessary for Max to have in order to be thorough in his treatment protocol. Even though, as of his last diagnostic update before his stem cell transplant, Max was esssentially cancer-free, this cancer is just too aggressive to leave the door open to any remaining cancer cells.

We were prepared for this of course and we don't anticipate any suprises. Most likely the radiation will be concenctrated at the site of his tumor -- or what's left of it (left shoulder/neck).

This weekend we broke the rules a bit and we went to the beach. Even though Max is still supposed to be in isolation, it was too much to resist... and Max was soooo happy to be out and about, with his feet in the sand. You could just see the joy in his face as he rubbed his toes in the sand!

We'll post another update after his radiation consult later today.

Max Under House Arrest

Max has been home now for almost ten days (24 days post transplant) and he's doing great! You'd never he know in a million years that he had some crazy amounts of chemo and a stem cell transplant if you saw him.

He's officially under "house arrest" as I call it. But, better here than in a small hospital room. His isolation period will last until the end of June, possibly end of July, but he's doing so well that we're banking on the June date. Until then he's not permitted to go outside (although we do let him into the backyard for a little while each day with a mask on), and absolutely no visitors - especially kids, which is breaking his heart because the kid needs to see his friends! The no-outside-rule is due to airborne fungus and molds that he could inhale and become sick from. The no visitor rule is to keep the germs and bacteria he's exposed to to a minimum (again, fine with me, because I certainly don't want Max back in the hospital and I don't want to sleep in that chair again!)

He's doing quite well just hanging in the house and keeping busy with his plethera of toys and DVDs. Every once now and then he gets a little grumpy because he wants to go to the train museum or a park or the beach, but he seems to understand when I remind him that he could be stuck in a hospital room instead of being home. Such a trooper!

Max is taking only one oral medication each day... and he hates it. So you can imagine how fun it is for mommy to force it down his throat each morning. He is only going to the clinic once a week to have his blood counts done and get an IVIG (an immune-antibody something or other infusion).

Max's red blood and platelet counts have stayed up since he engrafted, although last weekend we had to give him two shots to boost his white cell count.

Again, your thoughts, prayers, positive vibes -- whatever you're sending his way -- is working and we thank you!

MAX IS COMING HOME TODAY!!!

3 weeks and 2 days. Almost a world record... He'll be released in about an hour (1:30P). Gotta run...

Miracle Max!

Okay, this kid is just a miracle! We are thirteen days past Max's stem cell transplant, he's been in the hospital for a whole 20 days, his blood counts are out of this world, and as soon as he eats a couple of meals in a row he gets to go home.

Yes, you read correctly: gets to go home. (I hope he eats a great dinner!)

They cut his IV nutrition in half today, to 12 hours per day, which has already helped his appetite come back. Today for lunch he had 1/4 hot dog and 1/2 choc chip cookie. He's on the right track!

Max's blood counts have stayed up and he received his final GCSF shot (white cell booster) Saturday night. He only received two red blood transfusions and two platelet transfusions during this whole stay.

Max is obviously feeling great. Energetic and happy. We remind him daily that he can go home in a few days if he eats well now. He seems to understand and is doing his best.

Weekend update - After dad's stay this weekend.

Max's ANC (see post below for reference) was over 24,000 today. This basically means that a homosexual rhino that just came back from a 'boy's weekend' on Castro Street in San Francisco, and which coughed in Max's face and wiped his nose with Max's hand wouldn't be cause for Max getting sick. More important, his red blood cell count went up, which is the last to rise and which truly signals that he's producing blood on his own and at a fairly good clip. Super Stem Cell Boy is his name for now...