I am your father Luke

Last weekend at Legoland - just up the road in lovely Carlsbad - it was Star Wars weekend. For anybody who doesn't have a six-year old boy, Lego has effectively kept the Star Wars franchise alive for another 20 years by absolutely captivating the minds of young boys with their Star Wars merch. From video games to $100 Star Cruiser sets, Lego has definitely done well with this license. So, since Max seriously thinks and talks about nothing else other than Star Wars and Legos, we thought we'd go. We even brought Nic along for his first amusement park experience. He's such the third child. Eating ice cream at 3 months. Amusement parks at 20 months. Good thing I don't like cigs or I'd be sharing my smokes with Nic while watching WWE on friday nights. But I digress...

Max was definitely excited to go. So on Saturday morning we got going early and met papa and aunt Joanne at papa's club down the hill from us for breakfast, then shoved off for the short 10 minute ride north to the flower fields of Carlsbad and Legoland. We finally got through the entrance around 11:30 and began our day.

Just like NYC but, sadly, without the surly cabbies.

Max with the only live character he'd take a picture with that day.

A boy, his Wookie and the Wookie's crossbow are not easily separated.

Nic. Confused. Because he sees NASCAR in front of him, but wonders where his can of Old Milwaukee is...

And the best part of the weekend was that we let the kids watch 'The Empire Strikes Back' for the first time ever on Sunday so they finally understood the phrase that bears this blog's title.

Like a true boy, Nic reaching out to the bad guy Darth Vader (out of the frame but what he's reaching for) and ignoring the cute robot. But not Hannah, she avoids the bad guys (phew!).


Chemo X, 10, Ten

Wow! Max's tenth round of chemo started this week. Hard to believe we have a five year old who's had ten rounds of strong chemo in only eight months and there's no end in sight. Yes, his cancer is stable... but how do we keep it there (or better) and not ruin his body with toxicity?

We've had some goods talks and emails with Max's oncologist regarding the toxicity question and what we can do next. Andy brought up a good point about current therapies subjecting NB kids to really high dose chemo, hot antibodies, radioactive treatments (to name a few) and how none of it seems works in the long run (no remission). Sure it knocks the cancer for a loop for a little while - but it knocks the kids for a loop too. Can their little bodies recover faster than the cancer?

Currently, we're trying to keep the monster at bay without weakening Max. After this course of chemo we're going to add a low-dose oral chemo that Max would take everyday or every other day between IV chemos. This may require his IV doses to be lowered in order to keep his blood counts from dropping too much. The only way to tell is by doing it. The only way to see if it will help is by doing it.
On a lighter note: Max is having playdates with his friends at the clinic this week! Why didn't I ever think of this? (Thanks, Andy.) We packed up the PS2 (playstation2) and took it along. I was able to schedule a friend a day Tuesday - Friday to come and play with Max. He's been so excited to see his school friends! Of course, I didn't bring the d%#* camera! I'll remember tomorrow - check Max's Kid site this weekend for photos.

Max is feeling great this week, is happy about his friends stopping by to play, and it totally shows in his mood. He has been so open and animated with everyone in clinic this week. Talking to the nurses, showing everyone his newest lego toy, and waving and saying goodbye to all the other kids and the nurses as he leaves each day. What a great spirit.


What do we got goin' on...

Ahhh... summer has arrived and as a friend said in an email sent out to some lovely folks that drop dinners at our doorstep during chemo weeks, "Hope you're enjoying the start of summer! Unfortunately for the Mikulak's, there is NO vacation from cancer." Couldn't have said it better myself, although it was like someone hit me in the face with a cold glass water.

Nonetheless, we are having a bit of vacation time. Been to the beach: Max's head got a little sunburned. Oops. All three kids had a blast as usual digging up sand bugs and saving the toys from washing away in the waves. Made a field trip to Papa's new pool and found out that it is indeed not heated. But we all got in and had lots of fun anyway.

Max did need to make two appearances at the clinic this week for CBCs. He was due to start chemo Monday, but his platelets were still too low. Could've tried for a Thursday start, but then decided that being at the hospital over the weekend would just stink, so we opted to try for a start next Monday. Should be a go as his platelets are strong and we're giving him two booster GCSF shots tonight and tomorrow to lift his white count.

Good thing we stopped into clinic today and ran into Nurse Amy. She saw Max's birthday party invite (very Lego Star Wars) and told me that Legoland was having their annual Lego Star Wars Weekend this Saturday and Sunday. We are so going! Max and Hannah are gonna flip out. The kids will absolutely love it! Max and Hannah play Lego Star Wars on the PS2 (playstation 2) every chance we give them and Max saves and spends his allowance on Lego Star Wars sets only. His most recent purchase was the Jabba the Hut Sail Barge at $75! Yikes! BTW: he gets about $5 per week so this took a while to save for. And a big thanks goes out to Papa who threw him a $50 which took him well over the top!

Max and Hannah are going to attend two summer day camps: Camp Reach for the Sky, hosted by the American Cancer Society. And SportsJam2007 hosted by Solana Beach Presbyterian Church where the kids attended preschool. Cancer Camp will be really great for Max because they can attend to all of his treatment needs while he's there for the week. Transfusions, CBCs, hopefully nothing else! This will be a great experience for Hannah, too, as she is definitely feeling the effects of being sibling to a cancer kid. "Second class sibling" is constantly running through my mind (Syd Birrell).

Our last big adventure of the summer will be our family vacation to Carmel, CA. We've rented a cottage that is two blocks from two beaches and a few blocks to town. Can't wait to see the Monterey Aquarium, too!

We've got friends and family setting up mini-adventures for Max, too. We'll post as these come up - there are some doozees! Have a great summer! Let us know when you're heading to the beach. Post your thoughts and comments - we love to read them!


MagicWater Project is officially live

I won't try and duplicate genius. Patrick Lacey, dad to NB warrior Will Lacey had a phone call with the other MagicWater parents this past Wednesday and promptly set out to raise money for our mission - saving lives. Patrick wrote an incredible entry on his blog here, and it really does an incredible job explaining what we're trying to accomplish and why there is a need for what MagicWater is doing and what it means to Will. Please read it, and if you have the time, other entries on Will's blog, it really gives a good insight into the daily life of a family battling NB. Plus, the pictures of Will are just precious. He's a crack-up and though I've never met Will, I hope to someday.


Home from the Chataeu du Rady

Another amazing recovery by Max.

As Andy stated Max checked in to the hospital on Wednesday afternoon with a fever of 101.3. His port was accessed, blood drawn for a blood culture, and hooked up to IV fluids while waiting for the physician on the floor to write orders for an antibiotic. He finally got some tylenol for his fever and the antibiotics running and felt much better Thursday morning. No fever, just a little achy.

When we got to the hospital Max's counts (blood counts) were zeroed out:
0.1 white blood cells (4-12 preferred)
240 ANC (should be 500-1500 preferably, however the doctor felt this was artifically high due his body kicking up everything it had to fight the infection.)
33 platelets (75 is a good number)
These would account for his getting an infection somewhere. His blood culture came back negative, meaning that the infection did not become blood-borne, as did his c-diff sample. Good news on both. So it seems that he simply had a localized infection possibly at the site of his recent BMA (bone marrow aspiration), but it could've been anywhere in his body.

His counts Thursday morning were still pretty low. His ANC had dropped to 160, whites and platelets still real low and his reds were at transfusion level 7.5 (got a refill on those Thursday afternoon). The only way out of the hospital with post-chemo fever is to get that ANC up to 500. We were well prepared to stay again Friday night because the leap from 160 to 500 wasn't gonna happen.

Ha Ha on us. Friday morning Max's nurse brought the CBC sheet ot me and I read, "ANC 600." Get outta here! And we did. Max was so happy! (Note that being in the hospital is incredibly boring no matter how much stuff your mom brings from home.) He talked the ears off of any person who happened to walk in for the next 3 hours as we packed and waited for the discharge papers.

Today was also Max's last of Kindergarten. He was discharged at 11:30 am. We booked to the car and Mommy drove really fast to get Max to the last few minutes of school. He walked into class to see everyone singing/signing "You Light Up My Life" (how appropriate...) and sat down next to Ms. Weitz and sang along. After the song the kids all hugged and high-fived him. It was so heart warming to see all the love his class has for him and to have made it there for even a few minutes.

So yet again, Max pulls a rabbit out of a hat and surprises us all. Way to go, Max!



Max is being taken down to Children's as he's running a fever - 101.3. He'll be in for the night. It's probably nothing as he's had the c-diff bacteria infection plus we were skipping the G-CSF shots in hopes of avoiding musculo-skeletal pain but looks like our strategy back-fired on us this time. Will post an update later tonight.

A few Miracles for Max Stories

The stories keep trickling in. I wanted to share a few with you about the fundraising that took place at Hannah & Max's school over the past two weeks.
  • A group of 2nd grade boys and girls got together after school one day and sold chocolate milk and frappacinos to the parents waiting to pick up their kids and made $228! Papa John was there and said they were really working hard. Greg, Hannah, Robin, Jinny, Eric, Samuel, Soojin, Jaeyoung - thank you!
  • Many children donated their very own allowance money to help Max. I know personally of two little girls who took $20 each from their piggy banks. Thank you Julia and Jamie!
  • Another class sold lemonade after school and I hear they made over $200! That must have been some good lemonade!
  • This came in with a donation: "Thank you for being strong for all of us. Love Ava Cross" with lots of hand drawn hearts and a rainbow. Her sister Alexa wrote, "For Max. We love you. Alexa."
  • Another note: "Dear Max, I feel sad for you. I want you to feel better, make your life wonderful, your a superhero Max. I hope you get well someday. Have a nice life! From Joyce 1st grader."

I could go on and on! Thanks everyone!


Yesterday Melissa, Lori, Jasneet and Brenda, and the incomparable Ms. Weitz tallied the donations from the Miracles for Max fundraiser at his school and the total came to just north of $10K!! This from only two weeks of fundraising. We have an amazing school and live in an amazing community! We also think Max was lucky enough to have the best teacher possible to experience Kindergarten this year in Ms. Weitz who took such a personal and professional interest in his situation. Ms. Weitz, we couldn't have made it through the school year without you. Solana Highlands parents, students, teachers/assistants, administrators and the community-at-large. You have helped save lives. The money will be used by the MagicWater Project to help fund an important phase 1 trial that previously was only available out-of-state. Now, it will be available here at Children's San Diego which will make it much easier for parents and their children to get access to this experimental but promising treatment.

Thank you!! Your donations will do good, in our community, for kids that need help the most. Your donations will help save lives.


More scans - possible treatment changes

Max had his MRI and BMA (bone marrow aspiration) yesterday (Monday). It was a long day. Melis and he didn't get started until noon and got home around 8:15pm, because he needed platelets as it turned out. Max awoke from his BMA quite sad and in a lot of pain, which luckily was brought under control very quickly. He's still very sore and I suspect he won't be too active today during his kindergarden carnival celebrating the end of school. Oh well, at least he's there and and not at clinic!

We're also considering some possible changes to his treatment. I'll post those to the 'Max's Current Treatment Protocol' section on the right column of this blog as soon as we formalize our decisions. To give you an idea, this is what we're thinking of doing (all or some of these would be in addition to what we're already giving Max):

- Adding oral etoposide (VP-16). This is a chemo drug somewhat similar to the topotecan that he's currently taking though it inhibits the topoisomerase II enzyme instead of the topoisomerase I enzyme. It's well-tolerated and some of the kids have done extremely well on it, though there is some risk for secondary leukemia and so we're looking into those risks more closely before making a decision whether we add this to the mix. Another concern is overall toxicity as Max is starting to show signs of cumulative toxicity from the now 9 rounds of IV chemo that he's received since relapse.

- Adding Celebrex for COX-2 inhibition (by selectively inhibiting the overexpressed COX-2, allows p53 to work properly. Functional p53 allows DNA damaged neuroblastoma cells to commit suicide through apoptosis, halting tumor growth).

- Adding Tetrathiomolybdate for anti-angiogenesis effect (tumors need blood supply to grow and so need blood vessels to bring blood to new tumor growth - slow down the growth of new blood vessels and you slow the tumor growth).

- Added Silymarin/Curcumin (thanks for the idea Meryl). A natural supplement anti-inflammatory that functions similar to Celebrex.

- We're changing administration of the Zometa to day 1 of chemo from day 5+3(Zometa is a bisphosphonate - when tumor spreads to the bone marrow, it signals to natural bone destroyer enzymes to "make me some space" so that the tumor can grow - bisphosphonates halt that destroyer enzyme - no space, no tumor growth and stronger bones, we'll take that!)


Prelim MIBG scan results - stable

Yesterday, Melissa watched over the shoulder of the scan tech and reports back that things seem stable with the remaining disease on his T-11 vertabrae, the original spot of recurrence we believe. We'll update this post with official results when we get them, as well as results of his MRI and BMA tests. GI problems seem to be resolving too. Thanks for all the super comments the past few weeks.


Scans, infection, school

Aside from these being the last two weeks of school this year and our attempts to get Max there as much as possible, he's got some important scans at the hospital coming up. Wednesday he'll have his MIBG and next Monday an MRI and bone marrow aspiration.

Andy & I are very interested to see the results. Last months scans showed stability but no visible improvement from the previous scans. His urine markers (VMA and HVA) have had an ever so slight increase since March which is not good - but also not an accurate way (alone) to judge what's going on with his cancer. (added by Andy 6/7 - Max's LDH on 5/29 was 655, normal is 500-900, and trending upward; VMA was 12.2 up from 10.8 and also trending upward)

Our concern is such that we are meeting with Max's oncologist this Friday to discuss treatment options should the scans show cancer progression or simply stability again. How can we kick this thing down?

Going back to the other area of concern this past week (his stomach problems) we've started giving him g-tube feeds as of last night. He's responding well and we'll have him back up to 4-5 cans per day before the end of the week. His antibiotic for the C-Diff infection is a pain in the butt: 4 times per day for 14 days! And it tastes awful... yeah, I tried it. It's so bad that I'm training the nurse at his school how to give it to him through his g-tube because he has to take it during the lunch hour.

His counts were getting low today at his clinic check-up. The nurse he saw thought he'd need a transfusion before the end of the week - he'll be back in Thursday to check. His ANC is only 370 so he'll be back to wearing a mask at school and hopefully not pick anything up that would cause him to miss the last week of school and the Big Kindergarten Carnival which is the funnest thing ever! As always, we will work our hardest to see that he makes it!


From Hannah to Max

Written by Hannah (7) earlier this year to Max, supposedly while I was with Max at the clinic or hospital on a weekend day. It's precious.

Dear Max
I hope you feel beter. Fun blew away. If you were here, fun would attrackt to you. You are a fun magnet. Do you know what I mean by that?
Hannah, Mommy, and Nic


Clostridium difficile

Turns out Max's stool tested positive for Clostridium difficile, a not-to-be-underestimated bacteria of the gut. It's fairly common for immuno-supppressed individuals (such as Max was earlier this month) to get this. Treatment is using 600mg/day Metronidazole. I read that Kefir also helps so will be getting some this morning when the stores open and start giving it Max through his g-tube.

Max's appetite is so-so, he's thrown up twice since yesterday which could be caused by the chemo or the metronidazole, as its one of the more common side effects (fun, trying to figure that one out).

Hopefully this fixes his GI problems so we can get back to the business at-hand, beating back the cancer while continually trying to optimize his overall health.


Digestion Problems Deux

We got a stool sample from Max last night (fun) and brought it into clinic today for testing. Turns out there was something there! Max will start some kind of antibiotic tomorrow and hopefully this will make his tummy all better! Crossing our fingers for the best!