Paul Saxon - Angel

Paul passed away last night at 3am Tx time. He was on the nifurtimox study at University of Vermont just as Max was. Please visit his site, read his story, and do what comes naturally.

La Mesa Fire Dept

More of an update here. Just wanted to profusely thank Justin and Captain Steve from La Mesa Fire Department station 12 for the awesome firehouse experience last Sunday. You can see pics on Max's "kid-friendly" blog. Guys, you made Max's (and Hannah's) day and I'm sure one day Max will really want to be a fireman instead of a trash truck driver!

And a huge thanks to Jon (who set up the visit for Max) and AJ (whom Jon knows and works for LMFD, but was called out of town to fight fires in Northern California).

Friday the 13th is a lucky day!

Why, because it's Hannah's (Max's awesome big sister who takes care of Max and keeps him safe at night) and Sam's birthday today. Two amazing kids, each in their own way affected by cancer, and who's parents are linked by a common goal: beating cancer for their kids and others.

Hannah turns 8 today.
Sam turns 7 today.

We wish the two of you all the happiness and love the world has to offer.

Cancer is fun!

Will update this more later but wanted to quickly share with you a pic from yesterday. Max got out of the hospital around 11am, whereupon mommy dropped Hannah and Nic off at Nana and Tata's house, and continued on to the amphibious base on Coronado (where the Navy Seals train) for a boat ride around San Diego bay in a Navy Seal attack boat. That's cousin Jake next to Max who just left the Navy having been a driver on one of these.

We're home!

Finally...

Extreme NB

Life battling NB is frequently a life of extremes. Highs can be extremely high. Lows can be extremely low, obvious on that one. This week is shaping up to be one of those extreme weeks.

High - on Sunday, Max got the firehouse experience of his life. Full tour? 'course. Wear a fire coat and o2 tank? c'mon. Go for a ride in a brand new $750,000 fire engine? whoa.... DRIVE a brand new $750,000 fire engine. WOW! Pull through the garage, switch over to the pump, pull out a 2 1/4" hose and spray water through a real nozzle? NO WAY! See pics here: http://maxmikulak.blogspot.com/

Low - on Monday, check into hospital with fever.

(pending) High - Thursday, take a ride around San Diego bay with a Seal team and cousin Jake (who just got out of the Navy driving the Seal boats). Somehow, the gods have shined down on Melissa and she gets to go on this adventure since the 'boys' want to go out at noon on Thursday. I bet Melissa could auction a boat ride with a Seal team to one of the CV moms for thousands! ;)

Low - gotta figure out a new plan for Max. Obviously addition of VP16/Etoposide has played havoc with his bone marrow (two transfusions in two weeks).

I also just wanted to share some infectious pics of Max working on a new Lego project. And a couple from the Fourth, especially one of Hannah, who's been having a rough time with all the attention, gifts and prizes lavished on Max. I seriously think she would give her left foot to be in the hospital with mommy tonight...


Max with his Imperial transporter Lego set that he bought with the wad of $1's from papa. Look closely and you'll see Lego Luke Skywalker's head on the bikini-clad body of Lego Princess Leia...


Hannah being patriotic and symbolic at the annual kids parade in Del Mar on the morning of the Fourth.


Hannah (Max in background in top hat and red jacket... where's Nic? Oh sh*t!)


When I look at Max's smile I see such innocence.

Max:Fever = Check-in:Hospital

Just home for a second to pack up some overnight essentials. Max went into clinic this morning for his CBCs. Had a runny nose and slight sore throat. Well, with low white blood cell counts and low ANC it all adds up to a fever that slowly but surely escalated and hit 101.2 right before he was ready to go home. So he and I have a reservation at the Chateau du Rady for the next few nights (hopefully not too much longer than that!). Good to point out that sometimes you get to stay for 7-10 days due to fever and low counts. Woo-hoo!

Max is remarkable on the spring-back, so I hope for the best!

You Can Help Raise Awareness

Go to http://www.curesearch.org/support_curesearch/raise_awareness/ and click on the links to write a letter to your congressman regarding his/her support of the Conquer Childhood Cancer Act of 2007. Budget cuts are leaving researchers high and dry which in turn leaves our kids in a worse position.

Write a letter, send an email, make a phone call.

FU, NB 2

James Runde

FU, NB

Paul Saxon is having a hard time. He was on the Nifurtimox study.

Elesha Debenport became an angel June 22.

Please take a moment and visit their sites. Do what comes naturally next but please remember that there are kids that are not doing as well (wow, that's a relative statement) as Max.

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!

Fever=hospital

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!

$10,000!

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?
Love,
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!

Digestion Problems

You didn't actually think everything was going perfect, did ya?

Yeah, Max has been having some digestive problems over the past 3-4 weeks. To preface this topic I'll remind you that he started his nightly g-tube feedings about 8-9 weeks ago and put on almost 7 lbs... he was up to 17.7kg! The feedings consist of a special formula similar to Ensure that is specifically for tube feeding. About 3-4 weeks ago he started getting diarrhea everyday that wasn't necessarily connected to chemo. Shortly thereafter he began throwing-up. He'd wake at midnight, throw-up all the formula he had just been giving over the past 5 hours - with none of it even looking curdled or digested. Or he'd do the same thing first thing in the morning. It was inconsistent timing and, again, not really connected to chemo.

So we switched his formula to an elemental type (meaning it's completely broken down so your body doesn't have to actually work to digest it). The vomiting continued for a few more days, then stopped, but the diarrhea has continued. His weight is back down to 16.9kg telling us that his body is not digesting the formula. It's flushing right through his system.

In an effort to figure out what's going on we've suspended his feedings (per his doc) and all of his supplements for this week. We're also going to see if we can have his g-tube button changed out. This is an easy thing to do: the nurse deflates the balloon on the inside of his stomach via a hole located on the outside of the button Photo. Pulls the whole button out and replaces it with a clean, new one, inflating the balloon through the same hole. The nurses told me these buttons get quite gross in there and I'm seriously wondering if this isn't the cause of his problem. Apparently, they will last from 1 to 8 months before needing a change. I'd say we're ready and I'm bringing one to clinic tomorrow. This ought to prove fun as Max still hasn't let anyone touch it!

Chemo IX & "Miracles for Max" start TODAY!

Took Max to clinic this morning with a full agenda:

• Get CBCs taken asap
• Start pre-hydration in case his CBCs are good enough for chemo to start
• Get doctor check done asap
• Get Max back to school asap for Hannah & Max Day and Miracles for Max fundraiser kick-off day
• Pick-up Max at noon and head back to clinic for chemo

All of these things happened just as I had hoped with the help of the awesome nurses at the hospital. They were happy that Max was having a special day at school and wanted to help get him there as soon as possible so he could enjoy part of it. Max was in school at 9:45! Nice work! I already received the call that his CBCs are great and chemo can start today as scheduled. I'll pick Max up at noon and head back down to clinic for a late start. He should be finished up around 6:30-7:00 tonight. Well worth it though!

The Miracles for Max fundraiser starts today, too. Ms. Weitz, Max's kindregarten teacher, has put together a wonderful fundraiser through-out our school and community to help raise awareness and much needed money to fund NB research. The fundraiser will run from today through June 8th at Max's school with all proceeds going to the Magic Water Project. Thank you, Ms. Weitz!

Big Bear or Bust!

No bust! The weekend was great! Andy took Friday off for an extended weekend and we headed up to the mountains with the econo-liner filled to the roof.

The cousins (Chase and Hallee) were already there to greet Hannah, Max and Nic and the fun began right away with a pinecone hunt that continued all weekend and developed into "art" in the front yard. Hannah and Max both made friends with a very large dog, Bear, who wandered the neighborhood as well as Max-the-Pup, my sisters' dog, who they are typically afraid of. (My kids are terrified of dogs FYI.) They got dirty, played Star Wars with sticks, went on a nature hike and made animal track casts at the Discovery Center, went fishing (no luck!), took a spin on the Alpine Slide, stopped at a Hot Rod show, and had a pontoon boat ride! Whew! All in 2-1/2 days! (Lots of photos on the kid friendly site.)

Dad and Mom had fun, too, hanging out with the kids and the rest of my family. We all stayed in one house that was just big enough for 11 adults and 7 kids. That doesn't mean everyone got their own bedroom ;-) ...although we did somehow!

Good adventure weekend.

This Week's News

For some reason we've had very busy week. Here are the highlights:

Monday
8:00am clinic day. Expected Max to need red blood and he did. Had a quick check-up and waited for the blood to arrive. Made it home by 3:00!! Yes - this is considered a great day. Max is still having disgestion issues. Spoke with the nutritionist at the hospital and came up with a few ideas to hopefully remedy the situation. #1 was to elevate his head more for his overnight feedings. #2 is to stop the fish oil for a week. #3 adding papaya enzyme. Will post more when we find out if any of these ideas worked!

Tuesday
Max's blood counts were really low yesterday: virtually no white blood cells (no germ fighting ability) so he had to stay home from school. He found out that mommy and Nic don't actually spend all day playing. We had three short errands to run and he barely made it through. He's quite the complainer ;-). We decided to give Max some GCSF shots to boost his white cell growth. All he wanted to know was what his prize was going to be. He came down with a cough last night and had a slight runny nose to boot today (although it's hard to have a runny nose with no white cells). We hoped he wouldn't get sick, however...

Wednesday
This morning he woke with a fever. Ugh. For those of you not-in-the-know on the chemo-fever: if Max spikes a fever of 101.0 he has to be treated in-patient with IV antibiotics for up to ten days. mm-hmm. F-U-N. So I packed an overnight bag for Max and I, and another for Nic to stay at Nana & Tata's house. Got everything together that I thought we'd need to stay overnight which took me an hour longer than I thought it would, but with Nic/godzilla destroying everything in his path it makes sense now. By this time Hannah's long gone to school with our wonderful neighbors, Jenna & Melissa. Max actually slept until I had everything ready to go. We were out the door at 8:50am. Max chatted happily in the back seat all the way there... hmmm, isn't he feeling sick? Turns out his fever went away all by itself (awesome!) and he just had to stay in clinic long enough to get a precautionary antibiotic and have his temp taken a few more times. Hooray - we get to go home! Made it home by 3:00 again today!

Thursday
Going back into clinic for a post-Wednesday check-up. Not expecting Max to need any blood products as his counts are on the way up according to Wednesday's lab results.

Weekend
If everything goes right, we'll be heading up to Big Bear for the weekend with my whole family. The kids will have a great time with all their cousins as they usually do. I was suppose to get all the packing done on Wednesday. Ha ha. A long, relaxing weekend away from home is on the horizon.

Penelope - Angel 5/19/07

Penelope passed away this morning at 5:30am.

Mr. Inspiration

This evening Max was the recipient of a very special award given by his school district. One child from each grade, at each school, is chosen for their special efforts to receive an Inspiration Award. Max received his for courage and effort. This is what his teacher, Ms. Weitz, wrote about him:

Max Mikulak is a true inspiration of courage! He is currently undergoing chemotherapy for recurred neuroblastoma, Stage 4. Anyone, and everyone, who meets Max is awed by his positive attitude and kind spirit. When he is able to be at school, he participates 100%, never letting his symptoms get him down. Max is always willing to share his experience, either through his "blog" or just with his words and he always does it with a smile on his face... his is truly courageous!

We think so, too.

Amazing

-----Original Message-----
From: Bob Tressler
Sent: Tuesday, May 15, 2007 12:16 PM
Subject: FUN: More about Bryan

Hello N-BLAST family! I chose the heading "FUN" because we had the most beautiful ceremony for Bryan, truly a fun celebration of his life.

Let me tell you how Bryan left this world. He did not die from cancer.
So for all of you who might lose a little hope with Bryan's passing, don't. His nb had been turned around by Dr. Sholler. We'll never know how far Bry could have gone in that direction. Maybe ned once again, maybe not. But it was headed the right way. Bryan died from a bacterial infection. It could have come from when he went to the bathroom, it could have come from one of us not having our hands clean enough, it could have come from his own body. We'll never know and we really don't care. We have a strict policy of not looking backwards and beating ourselves up over this or that. This has gotten us through nearly 9 years of this grueling battle, and it will get us through the rest of our lives.

Bryan and Mary Lou started that Monday morning the same as always. They packed for the week and headed for Burlington, 2 hours away. At the hospital, Bryan was hooked up to the usual monitors while he was getting treatment. There was nothing unusual going on. Bryan was talking about making corn dogs for the staff that week (he made quesadillas the week before & made $54!) All of a sudden he got very quiet, then the alarms went off. He went into cardiac arrest and died right there. No pain, no fear, no knowledge of what was happening to him. For Bryan, if he as going to die, we could not have asked for anything more merciful than that. But the docs were able to revive him. He was intubated and put on a ventilator, and heavily sedated. This bought us enough time for me to find our other son and drive to the hospital. It also allowed time for our daughter to get a flight from Manhattan to Burlington. She got in at
1 am. We were all there to help Bry through the transition from this world to the next. Now, before Jen got there, I guess around 11pm, Bryan's blood pressure started to fade dramatically. It looked as though this would be the end. Then, two child life specialists who were very close to Bry came in the room. They started chattering at him as if nothing was wrong. They talked about corn dogs, scrabble etc. His blood pressure shot back up to normal levels!! The doc confirmed that, although he was sedated and couldn't speak or see, he could hear what was being said to him and he could respond. What a gift that was to us!
From then on, when we spoke to him, he would occasionally squeeze our hand. We just knew he was hearing us.

So, we urged him to fight. And he did. He made one more big rally in the wee hours, but it became clear that would be the last one. Doc Sholler, as caring & wonderful as anyone I have ever met, stayed overnight in the room down the hall. She checked in on us often, and was back in the room full time before 6am. We felt such comfort as she guided us through what was happening to Bryan. Even though she told us his blood labs were getting worse, we continued to urge him to fight. And as he squeezed our hands, we knew he was giving it everything he had. Then, a little after 7am, Giselle told us he was going. As a family, we all put our hands on him. As a family, we all told him we loved him. As a family, we all told him it was ok to stop fighting. And then we all had our personal words for Bryan. I'm not sure what my other family members sad because I was focusing on what I needed to say. I knew I only had a few seconds to tell my son the last words he would hear from me. And so I told that I knew he could see Jesus waiting for him with open arms, and to run into His arms right now, don't stay here any longer. And he shuddered, ever so slightly, and then he was gone.

I will live the rest of my days in peace knowing that my family delivered Bryan to Heaven. I thank God for being so merciful to him and us. We are healed as a family, and Bryan is healed from cancer.

We did not mourn Bryan's passing, rather we celebrated is life. He touched so many people and had a profound and, in some cases, life changing impact, that we rejoice for the time we had with him. He served God's purpose for him here on earth, and now he is enjoying his reward.
Amen.

www.caringbridge.org/ny/bryan

Bob Tressler, forever proud dad to Bryan. I am humbled in his presence.

Round 8 - post chemo wrap

Whew! Busy week. Here's the highlights.

Max breezed through his chemo this week.
Though he's feeling more nautious that usual and has NO appetite. Yesterday he ate a couple of M&M's, and a few sips of plain chicken broth at dinner. Thank goodness for the g-tube, though that's been making him a little sick lately too.

Family day at Children's Hospital San Diego.
Not what you think. Instead, we had the rare treat of having two kids in the hospital at the same time for different procedures - Max: chemo and Nic: hernia operation. Nic sailed through the operation and was out of there before noon, on his way home, and today (Sat) is doing fine with no known pain (Tylenol with codeine helps that).

MagicWater Project.
Two good things happened. One is Neil (www.TeamSam.com) and I met with Max's onc Dr. Roberts and we're going to try to open the Nifurtimox trial that Max was on in Vermont, here at RCHSD. That won't help out Max but it will help out some other kids with NB who may not be able to travel to Vermont or St. Louis (which is opening the Nifurtimox trial June 1). And, the hope is that we'll bring more trials that can help Max from Vermont to RCHSD. Another good thing that happened is that we're finally getting the MagicWater Project Fund going at the San Diego Foundation. This will enable us to get more low-toxicity trials going to keep kids like Max, Sam, Penelope and others fighting their cancer without blowing out their immune systems or internal organs. More info coming soon.


Max chillin' on Friday night in the playroom.


Walking to Max's Thursday night Kindergarten performance at his school.

Finally, lately Max has been having his own little Friday night dance party. Especially after such a busy week and his chemo, its great to see him with such energy, if not mad skillz, on the dance floor.

Geeta Anand - WSJ Reporter on MSNBC

The "Saying No to Penelope" story from last week's Wall Street Journal.

"Bryan is gone"

And so this long journey has ended. Bryan's incredible fight for life has been defeated by a bacterial infection which took advantage of his weakened immune system. Bryan left this world peacefully, not in pain. His family was with him, we all had our hands on him, and he knew we were there to ease his transition from this world to the next. When it came time for him to stop fighting, we all had our last words for Bryan. Words of Love, Peace, Strength and Comfort. My own words to him were to look for Jesus, to see Him standing there with His arms open waiting for him, and to RUN to Him.

And then he was gone.

Mary Lou and I are priveleged to have called him son. Jen and Bobby are priveleged to have called him brother. And anyone who ever met him, who's lives he touched, are priveleged to have known him. We all stand in awe of this incredible young man.

We will love you always, Bryan. And we will be with you again soon.

Dad, Mom, Sister, Brother

Melissa and I met Bob Tressler, Bryan's dad, in March at the Vermont Conference. He was too nice a person to have this happen to him. Bryan was on the Nifurtimox trial too, I think he was #3 or #4 and Max was #2. We just missed him in clinic while we were there. I love the pictures of Bryan on their website: http://www.caringbridge.org/ny/bryan/

Nutrition update

Max's nutrition has made an amazing recovery from four weeks ago. You'll recall at the end of March post that he had just received his g-tube and was still suffering the effects of not eating much for a few weeks plus the flu. We had also come to find out that he was osteopenic, meaning he didn't have enough minerals in his bones. The g-tube is amazing. Max weighs close to 40lbs now and has more energy. He's gaining muscle mass and his limbs don't look so painfully skinny. His face has filled out and he smiles a lot. Across the board, his calcium, mag, and phosphorous are within the upper range of normal, which is good. Further, his blood counts were high enough that he didn't need a transfusion this week, which I'm attributing to the daily doses of 8mg of melatonin he's getting at bedtime, which has been shown in studies to stimulate platelet and WBC production.

With this round 8 of chemo (which he started today), we are going to try skipping the G-CSF shots post-chemo and see what the melatonin can do on its own. If it works, we may stick with it as we think the G-CSF shots might be responsible for some if not all the mild leg/joint pain he's been experiencing lately.

We used to have a pet fish

Ya Can't Let Cancer Ruin Your Day outing #1

Inspired by Syd Birrel (www.JamesFund.ca), whose son James coined the phrase, "ya can't let cancer ruin your day," I rented a convertible to take Max to the Wild Animal Park this past Saturday.


Max getting ready for the open road.


Cruising past Lake Hodges, between RSF and Escondido.


What day at an animal park is not complete without Spongebob?


On our way to the new "heart of Africa" ride which takes you around the park.


Max the bird.

Saying No to Penelope - WSJ article about neuroblastoma

PAGE ONE
Saying No to Penelope

Father Seeks Experimental Cancer Drug,But a Biotech Firm Says Risk Is Too High

By GEETA ANAND
May 1, 2007

NEW YORK -- John London, a successful hedge-fund executive, is desperate to save his 4-year-old daughter, who suffers from a rare cancer. She clings to life at New York University Medical Center here, sucking her thumb and clutching her favorite teddy bear.

For the past month, Mr. London has been begging a small biotechnology firm to allow Penelope to be treated with an experimental cancer drug that might help. Mr. London has received high-powered support: Several legislators, including House Speaker Nancy Pelosi, have lobbied the company and its board to make the drug available. The Food and Drug Administration isn't blocking the way.

Neotropix Inc. of Malvern, Pa., says it would like to help, but the drug may not be safe for a child and dispensing it would be bad business. "For us to provide the drug to this child would be to put at significant risk a small company with limited financial resources," says P. Sherrill Neff, managing partner of Quaker BioVentures, a major investor in the firm, which is trying to tie up a vital round of financing of about $20 million. "You could delay the opportunity for lots of patients to get this drug if you sidetrack it for one patient," he says.

The deadlock reflects an increasing tension between individual patients and companies using the revolution in understanding biology to develop new medicines. Ideas for treating deadly diseases are proliferating, and the Internet carries hints of promising results into the homes of dying patients. They are pushing for the chance to bypass the laborious approval process and receive quick access to experimental drugs when all else has failed.

In the U.S. Court of Appeals in Washington last month, a lawyer for a patient-advocacy group argued that patients' constitutional rights are violated when they are deprived of medicines in testing that could save their lives. The Abigail Alliance for Better Access to Developmental Drugs wants the FDA to allow patients to buy drugs in testing directly from companies and to allow the companies to profit from the sale. A three-judge appellate panel last year ruled in favor of the alliance. The FDA appealed the case to the full appellate court, which is scheduled to rule later this year.

Lawyers for the FDA argued that broad access to experimental drugs could harm patients and undermine the incentive for them to participate in clinical trials, the studies companies are required to perform in humans to prove safety and efficacy.

"This is a huge dilemma we face as a society -- it's moral and it's ethical," says Patty Delaney, director of the FDA's cancer liaison program. "We have the incredible pain of an individual -- sometimes it's a 4-year-old child, which pulls at everyone's morality -- versus the societal issue of what happens if a small biotech company diverts its resources to a child or ill mother?"

Mr. London, 40 years old, was raised in Manhattan and spent seven years at Highbridge Capital Management, one of the largest hedge funds in the world. He co-founded SuttonBrook Capital in 2002 with $30 million in capital and built it into a $2 billion hedge fund. On a blind date in 2001, he met his wife, Catherine, a free-lance writer and editor. They married the next year, and she gave birth to Penelope, their first child, on July 6, 2002.

Growth in the Ribs
Penelope was 16 months old when she was diagnosed with neuroblastoma, a rare cancer that develops from nerve tissue and often appears first in the adrenal glands. By the time her parents noticed a growth under her ribs and took her to Mount Sinai Hospital, the disease already had spread to her lymph nodes, liver and bones.

Four days later, Ms. London delivered the couple's second child, a boy named Oliver.

Doctors told the Londons that Penelope had a particularly aggressive form of neuroblastoma and stood just a 25% chance of being cured. Over the next year, she underwent high-dose chemotherapy, radiation, a bone-marrow transplant and surgery.

A few weeks after the treatment ended, the family went on vacation to the Atlantis Paradise Resort, a hotel with a marine park in the Bahamas. They had just gotten off the plane when they noticed a lump on Penelope's neck. They tried to ignore it and enjoy the vacation, taking turns holding her in the underwater tanks for hours to indulge her fascination with the giant stingrays.

Soon after they returned to Manhattan, they discovered the cancer was back. Radiation shrank the tumors in Penelope's neck and skull, but the cancer broke through again after several months, in what would become a pattern. Each time Penelope's cancer progressed, the Londons tried a new treatment -- moving toward therapies earlier and earlier in human testing. Some treatments put her cancer into remission, others kept it in check for weeks, and some didn't work at all.

Mr. London combed the Internet and connected via Web sites with parents of other children with neuroblastoma. When he heard of promising research, he phoned the physicians or scientists involved, pressing them about whether their work could benefit Penelope.

Several times, the Londons say, their doctors told them they were out of options and advised them to take Penelope home to enjoy the time they had left. "More than John, I was willing not to try anything else because I just wanted Penelope to be comfortable," says Mrs. London. "But John just couldn't do that. And many times, he was right. Penelope would not be alive today if it weren't for him."

"Penelope was still laughing those deep belly laughs of hers, still running around and looking healthy," says Mr. London. "I just couldn't give up on her."

Not wanting to miss time with his daughter, Mr. London stopped going regularly to work at the Manhattan office of SuttonBrook. Running his hedge fund from Penelope's bedside at home, he often stayed up all night devouring medical research papers. One day, sifting through 600 papers that were presented at a conference, he read about an antibiotic used overseas that appeared to help a child with neuroblastoma. Pediatric-cancer specialist Giselle Sholler wrote that the child's cancer went into remission after being treated with the antibiotic plus chemotherapy. Dr. Sholler agreed to treat Penelope.

The combination therapy seemed to work, says Dr. Sholler, an assistant professor at the University of Vermont who had been studying the potential treatment in mice. The walnut-size lump over Penelope's collarbone shrank to less than the size of a pea, Dr. Sholler says. For three months, as Penelope's curly brown hair began to grow back, she played like any other child, dressing her dolls, making vanilla pudding with her older half-sister, Isabelle, and teasing the family cat, Charlotte.

"She had an incredible ability to bounce back," says Elizabeth Raetz, a pediatric oncologist at NYU Medical Center who has been treating Penelope and advising the family since she was diagnosed.

Through the struggle, Mr. London grew close to the parents of other children with neuroblastoma. "I felt so alone in going beyond what the medical establishment wanted me to do, that the parents of other sick kids were the only ones I could truly relate to," he says. He invested $100,000 in a fund that is paying for Dr. Sholler to test the antibiotic in combination with chemotherapy in a clinical trial. Dr. Sholler has enrolled eight patients in her trial and most have had their tumors shrink without many side effects, she says, although she cautions that the tests are still at a very early stage.

"John's passion for finding a cure for this disease and his daughter made this trial happen," she says. "And all of these children are seeing a better quality of life."

Cancer Breaks Through
Last November, Penelope's cancer broke through again. After unsuccessfully trying two other experimental drugs, Mr. London was particularly anxious when a parent emailed him in March about Neotropix's therapy.

The experimental medicine is a virus that strikes pigs and appears, in early test-tube and mouse experiments, to attack certain cancer cells in humans. The approach is new and risky, Neotropix Chief Executive Peter Lanciano notes, because it involves injecting a virus into humans that they presumably haven't been exposed to before. The drug is still in its earliest phase of trials for safety. It was tested in just six human beings over the past year. The company hopes to finish the first stage of testing over the next 18 months, giving the virus to another 49 patients, most with small-cell lung cancer.

Mr. Lanciano says that the week he took over as CEO nine months ago, the FDA put Neotropix's trial on hold because the first patient died. Only after four months of testing and analysis was Neotropix able to resume its trial, having demonstrated that the patient died from cancer and not the therapy.

That delay was on Mr. Lanciano's mind when Mr. London and his supporters began calling. The CEO says he wanted to help, but he thinks the drug is too early in testing to be used safely by a child. To give Penelope the dose that was effective in mice, he says he would have to multiply the top dose used in humans so far by 100,000 times. Normally drug companies are careful to raise the experimental dosage in small increments to detect side effects before they become lethal.

"The question is: Can we really help or would we do more harm?" asks Mr. Lanciano.

Mr. London argues this is a risk worth taking. "We're not talking of testing an unproven drug in a child who is perfectly healthy and running around," he says. "My daughter is already in so much pain and is so sick she can't get out of bed. If anything has a prayer of saving her, how can you argue it's not the right thing to do?"

Investors have put about $14 million into Neotropix, which was founded in 2003 by a former Novartis AG scientist. Last year, Mr. Lanciano, a former executive at several biotech companies, took the helm.

Mr. Lanciano and Neotropix board members have expressed concern that the FDA will force Neotropix to put its trial on hold again if Penelope dies. FDA officials called Neotropix and reassured the company that this isn't the case, Mr. Lanciano says. A colleague of Mr. London who is an internist had approached the FDA and asked it to deliver that message.

Despite the verbal assurances, the CEO says he is still worried. "You never have the ability to wash your hands of any adverse events the patient has," says Mr. Lanciano.

FDA officials, agreeing only to speak generally about the issue, said the agency would not hold a company accountable for the death of a very sick patient receiving therapy as a desperate effort.

"The FDA has good appreciation for the fact that we're dealing with people mortally ill and this is a last-ditch effort," says Richard Klein, director of the agency's HIV program. The notion that the FDA would halt trials over a death in such circumstances is "more of a myth, or urban legend," he says.

Nonetheless, "there aren't any absolutes," says Ms. Delaney, the FDA's cancer liaison. "We can never say: 'We won't pay any attention to safety' " when a patient gets a drug.

The Neotropix board held several meetings on the question of giving the drug to Penelope, Mr. Lanciano says. At one point, the board called an ethicist for an opinion. Urged on by the London family, patient groups and politicians, including the staff of House Speaker Pelosi and Pennsylvania Gov. Edward Rendell, lobbied on behalf of giving the drug to the child.

On April 18, the Neotropix board decided not to provide the drug. Yet calls from politicians and Mr. London's supporters continued, Mr. Lanciano says. Finally, four days later, a Sunday, Mr. Lanciano sent out an email, copying them all.

"Tremendous pressure has been brought to bear on all levels of the company" to try to get it to change its position, he said in the email. "We will not do so."

Mr. Lanciano, 50, says he sympathized, having lost his wife several weeks earlier to cancer at age 51. He tried to get her in clinical trials for pancreatic-cancer treatments, but she didn't qualify, he says.

"If I were that father and mother with a dying 4-year-old, I'd be doing exactly the same thing," says Mr. Neff, the partner at the venture-capital firm that has invested in Neotropix. "There is no right answer," he says. "But in a small company with limited financial resources and a high risk profile, you really have to reduce the risks to drug development."

Mr. London is now trying a new avenue. A day after Neotropix turned down Penelope, a friend Mr. London met on a parents' Web site told him about another company, Jennerex Biotherapeutics, also with a virus in the earliest phase of human testing for cancer. Mr. London reached the company's chief executive, David Kirn, on his cellphone and the two spoke for an hour. Dr. Kirn, a cancer specialist, agreed to provide his experimental drug to Penelope if a hospital would agree to administer it.

"If you are in the position where a loved one is dying of a disease, it is impossible to understand how any company can withhold something potentially beneficial," says Dr. Kirn. He says his company has raised $10 million so far, mainly from individual investors who leave medical decisions entirely up to him.

William Carroll, director of pediatric oncology at NYU Medical Center, said Saturday he's trying to get permission to treat Penelope with Jennerex's experimental virus at his hospital. He needs approval from several hospital committees that monitor clinical trials and biosafety because the treatment is a live virus. That process would normally take months.

Dr. Kirn is pitching in to make the case. "We're asking hospitals to compress a six-month procedure into a week and that's very difficult," Dr. Kirn says. "You're asking them to bless a plan with less than the full data that is normally available. But you're asking them to do it for a heroic cause -- to try to save a child."

Running Out of Time
Mr. London knows the family may have run out of time.

Wearing pink pajamas in a ninth-floor room at NYU Medical Center last week, Penelope, frail and partly bald, tucked her favorite stuffed bear under her arm as she watched an Animal Planet television show about a sick walrus that was saved. She cried now and again, sending her parents rushing over. A bowl of half-eaten oatmeal sat on the table; Mrs. London asked a friend to make it with extra butter to try to fatten up her daughter. Mr. London's computer was open to the Web site he uses to keep family and supporters updated about Penelope.

The Londons brought Penelope to the medical center Wednesday because her pain medicine wasn't working. They thought she needed stronger drugs to stay comfortable. The plan was to switch her to methadone, a powerful narcotic, and take her home.

On Friday night, after Penelope had struggled for two days with the pain, her eyes lit up when her big sister, Isabelle, appeared in the doorway. The little girl, who hadn't gotten out of bed in days, pulled herself up -- batting away the outstretched arms of her parents -- and wobbled over to sit on the cot beside her sister. Later, when Dr. Raetz, the oncologist, stopped by, she found Penelope, her arm shaking a little, putting the numbers of a block puzzle into the right spaces, not randomly but meticulously, in ascending order. "She's a very determined little girl," Dr. Raetz said.

"We go into this with our eyes open," Mr. London said, talking in another room out of Penelope's earshot. "The chance of anything bringing her back from the abyss now is very low. But the only thing I know for sure is if we don't treat her, she will die."

Mr. London and his wife say they are searching Penelope's big brown eyes for clues as to how long she wants to continue to battle for life.

For now, says Mr. London: "We see she still wants to fight."

Write to Geeta Anand at geeta.anand@wsj.com

URL for this article:http://online.wsj.com/article/SB117798196751887629.html

Ryan - angel 4/26/07

This disease sucks. Ryan only got home (Albany, NY) last night from Houston (MD Anderson) where he was being treated. Visit Ryan's site

Comments!

We'd love to hear from you regarding your thoughts to our posts.

Please click on "comments" at the end of each post and give us your feedback, thoughts, feelings, etc. We love to read them and they're easy to look back on when attached to the blog.

We look forward to hearing from you!

#7 Complete

Max is finished with round seven of his chemotherapy and is doing great. (I can't say enough good things about that g-tube! Amazing what good nutrition can do for a kids overall well-being.)

While finishing up his last day of chemo this week we were visited by a pair of storytellers who work at the hospital. They were very funny and told us (acted out) a couple of stories. Max actually set aside his Leapster and joined in on the fun shouting directions and laughing.


Our weekend has been very nice. Saturday morning we finally took the Rokenbok (loaned to us by some great friends - thanks!) and set it up in the livingroom on the train table. The kids are having a great time playing with it. Even Nic enjoys putting cargo-balls in the trucks for Max and Hannah to dump. Max has figured out how to drive those trucks really well. Hannah likes to fill the monorail trailer with cargo-balls then drop them on other trucks from high above.

Andy and Max left this morning on a run to the local nursery to pick up some flowers for the yard since it's Earth Day. Max also wants to find a fresh packet of pumpkin seeds in hopes that we can grow a pumpkin for Halloween. The kids are currently growing a batch of peas behind the playhouse just waiting for the day they produce. Hannah decided to stay home and explore the yard in her own fashion. I think chemo week makes Hannah miss home and homelife. Yesterday she stayed home, too. Laid in the sun, decided to wash the playhouse, got her clothes wet and ended up naked in the backyard. Ahh, to be a kid again!

Tonight we start the fun gcsf-shots again. I have to get to a store today and buy a Bionicle for Max's shot prize per his request. I have to tell you how well he does with those shots. He and I have our own jobs each night for the shots and he gets through it with no tears. He's truly amazing.

Tomorrow begins a new week and back to the grind of fitting in as much school as possible for Max with scheduled clinic appointments twice a week. Monday he goes in for vitamin C and zometa infusions; Thursday just vitamin C. Oh, and don't forget blood draws and possible blood transfusions. There's a lot of in-the-car-time for Max and Nic every week.

Until next time...

Pulitzer Prize photos featuring boy with neuroblastoma

Series of photos taken of Derek Maden and his mother Cyndie French during his 11-month battle against neuroblastoma. These photos won the photographer a Pulitzer Prize.

All Around Update + Chemo VII

Wow... Max started his 7th round of chemo today - on time I'd like to add. The booster GCSF shots he received over the weekend pretty much cinched it for him. Max is feeling good and doesn’t have too many complaints right now. It’s great to see him with a little head of hair and displaying some energy. Not really what you’d expect from someone starting their 7th round of chemo. Max and I had a pretty good day at the hospital from 8:15 to 6:15 (Monday's are long!) but we're no worse for the wear.

Max just had a CTscan of his feet and knee last week as well as a whole body MIBG (bonescan). It doesn't appear that there are any new hot spots (from what my untrained eye could see on the MIBG). There is a singular spot on his spine still, but nothing lit up anywhere else. The CTscan results came back with nothing. Max had been complaining about pain on the bottom of his heels and in his knee/leg area. We have reason to believe that his heels were hurting because he's been way more active (running, playing, etc.) since he began his tube feedings. The cause of his knee pain could be the same, but could also be attributed to one or more of the medications he takes. It's great to have a doctor who's willing to react as fast we need. The emotions of having a child with this cancer can be overwhelming and the help we get from Max's oncologist is one less burden. Thanks, Dr. Roberts!

Max’s g-tube is apparently working. We checked in for chemo today and found that his weight has gone up to 17.1 kg from 15.9 kg when he had it inserted three weeks ago. "Woo-hoo," as Andy so eloquently put it via text message! We are also going to change his appetite enhancer back to Megace. The periactin (sp?) we tried didn’t do anything, so we’re giving the first one another go around. Started it tonight.

Max’s hair is partially grown in and looking very fuzzy – like a duckling. I may need to take him down to the shop for a little buzz to even it out. I did notice some hair on the pillow in clinic today, so maybe I'm jumping the gun on a haircut!

I took Hannah and Max down to the model train museum this weekend. Usually Andy is in charge of this outing, however he had just taken Max there the weekend before so I took the reins and we headed down to Balboa Park for Western Days at the train museum. The kids dressed up in their western finery. Max in his blue plaid Wrangler shirt with slick black leather vest, and Hannah in her pink suede, fringed vest and matching skirt. Don’t forget the hats! We ended up in the fun, loud train room - O gauge - where one of the gals, Amy, who works there noticed Max with his obvious ‘currently-in-chemo-treatment’ look and struck up a conversation with me. She introduced me to Jon Everett, O Gauge Club President, and they offered Max the opportunity to come down on a Tuesday and run the room (control the trains)! F-U-N! Max is stoked and can’t wait for the next Tuesday we can make it down there.

Max and Hannah's school has a KidsKorp group that meets after school once a month. This month they've decided to honor Max and Hannah. They're going to read a beautifully written book called "I'm a Superhero" by Daxton Wilde (and his mom). It's a four year olds' interpretation of fighting cancer. The kids at the meeting will be able to ask questions and Hannah will be there to help answer them. They will make orange bracelets for all the kids in school to wear on a special day just for Max. (date tbd) This will really be a great opportunity for Hannah to feel involved and important during this time where she's a "second-rate-sibling" (to steal a phrase from Syd Birrell).

If you haven't already checked over on Max's Kid Friendly Site, be sure to. Eight year old Cousin Alaina spearheaded a recycling effort at her school and made $600 for the playroom at the hospital. Wow, again, Miss Alaina, and thank you!

A huge thank you going out to everyone bringing over meals and to Kristen and Lori for organizing this project thebelskys@earthlink.net or lorigood@san.rr.com. Getting home tonight at 6:45 and being able to just sit down and eat is such a blessing. You people are great and we really, truly appreciate you! (PS - we're covered this week ;-) contact Kristen or Lori if you'd like to be included in their future emails.)

Goodnight!

Kendall an angel

Kendall (post below) passed away this evening at 8:30pm CDT. That's how quickly this beast works. Send some good thoughts his family's way (he has a twin, Zachary). This kid was a warrior.

Three kids that could use some good thoughts thrown their way

Kendall http://www.caringbridge.org/ny/kendall/
Penelope http://www.caringbridge.org/ny/penelope/
Ryan www.caringbridge.org/visit/ryanmccormick

Also, both Max and Sam have been complaining of knee and leg pain off-and-on lately so they're both getting scanned ASAP to see what's going on. Max's scans are tomorrow (CT) and Friday (MIBG). Sam's are the following week I think, but I'm seeing his dad tonight and will find out definitively.

Top Ten Signs You’ve Been Fighting Neuroblastoma Too Long

Shout out to Margo for coming up with true comedy (that which is funny and makes a point that otherwise would be difficult to make without humor).

10. Every time your child gets a fever you hope it spikes to 101 or higher.

9. You’ve ceased to register the shocked faces at preschool when you off-handedly say, "Oh we can’t make it, we have chemo that day."

8. You’ve started inviting the nurses over to dinner

7. When you are at the ENT with your other child talking about removing his tonsils and the doctors says, "It’s surgery you know, it requires general anesthesia," you involuntarily go "Pfff."

6.When your child is diagnosed with pneumonia, you hope it’s the viral kind on the off chance pneumonia is an oncolytic virus that kills neuroblastoma cells

5. You can spell "pneumonia" and "oncolytic virus"

4. You don’t even flinch at throw up at a birthday party and help clean it up even when it’s somebody else’s child.

3. You can sleep through a stem cell transplant (stole that from the Londons)

2. When your child says something hurts you hope he or she has broken a limb somehow.

1. You have a hard time drumming up sympathy for Elizabeth Edwards and get ticked at all the cheery articles on how great it is to live with cancer these days.

General Grevious Gets Gushed

Tuesday Morning
7:00am - Max is a trooper. He's still not eating much but we'll pick up a prescription for a new appetite enhancer this afternoon at clinic. Breakfast was a flop, however, he powered down almost all of his pills (keep this in mind).

9:00am - Nic has an appointment with the peditrician. While I'm checking in I get a phone call from Hannah & Max's school. Its the school nurse: "Hi, Mrs. Mikulak. Max just threw up in class. He's here with me in the nurses office." Ok, um... I can be there in about 30 minutes. Is he feeling okay now? "Yes, he seems to be in good spirits." Ok, I'll be there as soon as I can.

So I get through Nic's appointment: he's a little anemic which could be caused by a virus or ??? And it appears he has a hernia in his diaper area if you know what I mean... So I just need to schedule an appointment with the surgeon, Dr. Hilfiker, who happens to be Max's surgeon, too. (I do not have time for two sick kids. What are these children thinking?)

Back to Max: we get to school and Max is reading happily along with the nurse through a big book of birds. He's happy as a clam and ready to go back to class. I excuse myself and trot down the hall to speak with his teacher, Ms. Weitz, to find out what happened: Today was Max's turn for the Secret Sack (show and tell). He brought his brand new Star Wars Lego General Grevious figure with four light sabers and the empty box showing the cool Lego ship that he has at home. Apparently he got a little excited about showing his new toy and nervious about talking in front of the class and promptly threw up IN the lego box. Ms. Weitz found herself impressed with his throw-up know-how. Mommy quickly remembers that he ate nothing this morning except a handful of pills. Hmm...

The good news is that he went back to class and felt fine the rest of the day.

Chemo VI

Max just completed his sixth round of cyclo/topo chemo. At this point the mix is working and we will stay this course until Max is again in remission or the NB cells become resistant to the current treatment. At which point a change would need to be made... however, Max is not at this point and is responding nicely.

Now that he is off-study for the nifurtimox (still taking these) we have added vitamin C and zometa (a bisphosphonate bone strengthener) to his cocktail. His first infusion will be Tuesday. The preliminary studies from Dr. Sholler's lab show that nb cells responded even better to the nifurtimox + vit C. The bone strengthener just seems like an obvious choice due to the fact that the cancer is attacking his bones. There is a study on this somewhere.

Back to Max: He was very tired this week and actually took a nap today in clinic during his post chemo hydration. His appetite was really low. Today he barely ate at all. He has been getting his overnight nutrition, but it's vital that he keeps eating by mouth, too. I'm trying to figure out what the cause is: he is post surgery on his g-tube, it's chemo week, we're feeding him over night. I dunno. I've decided not to call his overnight feedings "feedings" anymore. I don't want him to think that's his new way of eating. We'll figure it out.

Signing out for tonight with a big yawn. Melis

Butterflies

Syd lost his son James to neuroblastoma, and below offers words of hope for the parents who's kids have probably reached the end of their fight with this evil disease. His message below is to another NB parent who wrote today to Penelope's parents, expressing his grief at Penelope's state.

Henry,
Five years after losing my son to this monster disease I find that dealing with the trauma of watching his suffering is as hard or harder than the loss itself. It is because I do not want other parents to travel this road that I pour heart and soul into the James Fund. But I can say from my experiencethat neuroblastoma cannot defeat the spirit of our children, and it cannot match the strength of the love that surrounds the NB children. I would add that contrary to my thoughts at the time, it is possible to find life after NB, and it is possible to be happy, fulfilled, and to enjoy and cherish my surviving children.

I would go further, and say that although I instinctively label myself a failure for not saving my son, I perhaps have been able to contribute something to making this world a better place, if even only half the nice things people say to me are to be believed Now while I was in the place that John and Aimee and others find themselves today, and in the tremendously difficult time that followed, it bothered me ferociously that I did not love my other children as much as I loved James, and that my relationship with them was of a much milder quality. Well wake up Syd, what do you expect if you spend months and years of 24/7attention on a child, dodging the bullets in the trenches, living life's worst fear, and then try to create that same relationship with the "normal" siblings. One of the gifts of childhood cancer is that you get to know a child intimately, it is a relationship that normal parents can never experience. The loss is the greater, but the legacy can help you change this troubled world.

So I am writing all these words as I wait for the next performane of my 14 year old daughter Rebecca at a dance competition Rebecca was pretty cut up as a nine year old, grieving for her eight year old brother. Now she is a confident, cheerful, loving and accomplished young lady. And as I watched her dance, of course I cried quietly in the darkened auditorium, as dads do, but not just for the reasons normal dads do. I cried because she has managed to build a beautiful life despite years of being a second class sibling, despite the lack of stable parenting, despite the enshrining of her brother throught the James Fund and my book, despite the ongoing media fuss about her brother. I cried most of all because I thought of Penelope London, whom I saw smiling and laughing and dancing just three weeks ago, and who loves to run and leap and catch butterflies. What can be done with all our tears as we witness the horror of neuroblastoma? I am just a dad, I have no professional qualifications to comment on such hard things, but it seems to me to boil down the choices. Am I going to let tragedy destroy my family? Am I going to let neuroblatoma fill my life with its fear and horror? It was my son who said "Ya can't let cancer ruin your day" and so we put those words on his tombstone. And every day when as usual I don't feel like getting out of bed, because, remember, I'm a failure, then I remind myself that ya can't let cancer ruin your day, let alone your life, and that it is time to choose to get out of bed, and nurture my daughter, so she can dance, and my son, so that he can run, and my wife, so that she can sing.

My best wishes to you Henry, as you slay your dragon.
Syd. Wife of Pam, father of
Rebecca, James and Ben.
www.jamesfund.com

Penelope

Darling Penelope London (http://www.caringbridge.org/ny/penelope/index.htm) has gone into hospice at home. Please read her father's post below from last night, go hug your kids if you have them, and then perhaps decide to do something to help in the fight against this absolutely evil disease that strikes those who are least able to defend themselves against it. Penelope can't appear on TV with her husband and presidential candidate to talk about her disease. She can't stand at the podium in the press room of the White House and share her story. Her battle is invisible to most of us, but it is the most courageous battle of all, and it deserves better. There is not one drug that has been specifically developed for pediatric cancer. All drugs used to treat neuroblastoma are used "off-label", unlike higher-profile cancers like breast, lung and prostate which attract the research community's and pharmaceutical company's attention, focus and effort.

Thursday, March 29, 2007 7:07 PM CDT

I am writing this entry so that I remember it in the future. I am hoping it will help Catherine and me and our family one day....

Penelope is doing very, very poorly. Tumors are protruding from her skull, eye socket, spine, abdomen and are in every bone of her body. We know her time with us is so very short. She is in extreme pain, her vision is impaired and we have her on pain medication around the clock.

I was just lying in bed with her, holding her in my arms and I told her "I know you feel very yucky right now. Daddy wishes he could feel yucky instead of you". Penelope shook her head and said to me "I want nobody to feel yucky". Her eyes were closed and she went back to sleep. I squeezed her a little tighter and with tears coming down my face I said "thank you so much for saying that Penelope". She wants us to be happy. She doesnt want us to suffer. She is an angel as she seeks to keep her family from pain. We are so amazingly blessed to know her, to have her as a member of our family. We just want her to be as comfortable as possible in the period to come. I pray she is spared more suffering. Catherine and I tell her soon she will have no more pain and she will be chasing butterflies and laughing and singing. We love you so much Penelope.

Please keep her in your prayers.

Catherine and John