Children in the back seat

A good article below, nothing you haven't heard before but reinforcing nonetheless.

Quick update: still waiting to get Max's radiation appointment, so we're somewhat treading water on our push to get to NED. It's frustrating- its been more than 10 days since our consultation appointment, and you know how pushy we can be! Granted, Max's situation isn't life-threatening, but we still want to get him zapped as soon as possible.

Once we know something definitive, we'll update. Until then, it's business as usual.

Sunday, Oct 28, 2007
As I See It: Research into child diseases takes a back seat on funding
http://www.kansascity.com/273/story/335066.html
By Cheryl Mozer

Why do people with rare diseases not seem to have any voice in America? If you have a rare disease in America, you cannot count on having a treatment for it because there is no profit to be made. I have no problem with companies making profits, but why don’t they “give back” a percentage of that money to help others whose diseases do not have a large enough market to warrant research for a cure?

This year, 12,500 children in the United States will be diagnosed with some type of childhood cancer. Our son survived neuroblastoma cancer, a disease affecting 1 in 10 million children. Half of the children with the late-stage disease that Jacob had do not survive.

None of the treatments Jacob received were approved in children and he was saved only by an experimental antibody therapy found in New York City. Although childhood cancer is the No. 1 cause of death by disease in children (more deaths than all other childhood diseases combined), funding remains consistently low.

A group of seven fathers recently bicycled across America from California to New York (through Kansas City) because there is no funding for the estimated $3 million to $5 million it would take to develop a promising proposed treatment.

These fathers were anxiously trying to get the funding for doctors to develop the treatment that could potentially save their children’s lives. On top of the normal stress of having a critically ill child, one should not have to bicycle 3,700 miles to raise money for a treatment that could be developed if only the money was there (see www. loneliestroad.org). Private foundations such as Alex’s Lemonade Stand Foundation are struggling to make up for the lack of funding.

There are other options that could pay for critical research. Please send e-mail to your state’s senators and representatives to urge passage of the bipartisan Conquer Childhood Cancer Act, which would provide funding that could save lives. Twenty clinical trials are in danger of closing because of a lack of funding, affecting 400 children.

None of the senators in Kansas or Missouri have yet co-sponsored the Conquer Childhood Cancer Act. Reps. Dennis Moore, Nancy Boyda and Jerry Moran of Kansas and Sam Graves and William Lacy Clay of Missouri are co-sponsors, and for this we thank them.

Although the large cancer organizations do great things for adults with cancer, only a tiny percentage of funding goes to research for treating childhood cancer. September was Childhood Cancer Awareness Month, which was largely ignored. If it was your child, neighbor, grandchild, niece or nephew, would this be acceptable?

© 2007 Kansas City Star and wire service sources. All Rights Reserved. http://www.kansascity.com/

Fires update

We've been home since yesterday at noon. Kids are glad to be home. Lots of ash and debris from the winds Sunday, but otherwise - home sweet home!

Three years ago tomorrow, Max checked into Children's San Diego. Later the next day, he was diagnosed with stage IV neuroblastoma. Our family will never be the same, but we cherish and are blessed with every day of his precious life.

San Diego Fires

We're getting a lot calls and emails wondering if we're okay, and, Yes, we are. Carmel Valley (located on the east side of the I-5 from Del Mar) was asked to voluntarily evacuate early this morning, so we did. Packed up the kids and few items and went down to mom and dad's house in North Park. Max had a clinic appointment this morning, too.

The fires are still far east of our area. But the smoke and soot have been so bad since Sunday noon at our house that we would've left anyway. You couldn't even go outside and the inside of the house became smokey even with the house shut tight. School was closed today and will be again Tuesday due to air quality.

Should anything come up we will post. Thanks for caring!

Wear Your Care Final!

Ok, folks, the numbers are in: Over $11,000 was raised and close to 1700 wristbands ordered! WOW!

For those of you who ordered a band and didn't receive it (due to our short-sightedness on how well this campaign would go!), the new bands should be arriving by Halloween. We're so sorry for the long wait! We'll have your bands to you as soon as we get them. Thank you for your patience!

As for ordering a band if you would like more or simply don't have yours yet, please make a donation of any amount directly to Magic Water then send me an email with your mailing address, band size preference (child, medium or large) and I'll send your bracelet to you. (I think Mrs. Sturt needs a break!)

Mrs. Sturt worked so hard on this project and the money is still rolling in. Thank you all so much for your support and for Wearing Your Care. I'd have to say that this fundraiser was a huge success, wouldn't you?

The proceeds from this fundraiser went to the Magic Water Project which moves lab research into clinical trials for our kids by providing the much needed funds to make it happen. We believe that there is a cure for NB - it just hasn't been tried yet.

Lucas Tran

Another neuroblastoma (NB) child, one who by all counts shouldn't have died, passed away in the Bay Area this morning. Lucas Tran's parents did all that they could and should, and yet he still went from stable to progressive to hospice care in a little over 2 months.

Aaarrrgh! It makes me so mad! Lucas lives in the technology capitol of the world, and yet the majority of intellectual and financial support is directed at figuring out how to share homemade videos on the Internet, not at trying to find a cure for diseases that rob us of our future teachers, scientists and artists.

That's why there's no resting, no relaxing - once your child has NB, its like they've been kidnapped. And until the kidnapper is DEAD, you can't ever stop. We've got to kill NB.

Reality Check

NED - what does this really mean to us?

#1 - it doesn't mean we can relax with Max's treatment
#2 - it doesn't mean his cancer is "cured"
#3 - it doesn't mean his cancer will not come back

Too many times, in reading other families blogs, I read the cancer has suddenly, horribly, taken over their childs body. Out of nowhere... it just comes back full steam.

Don't get me wrong - I'm happy Max is headed in the NED direction (he has a radiation set-up appointment on Tuesday to zap that bothersome spot on his spine) - but the nature of this disease is unforgiving, unrelenting. And so must we be in return.

Article from Carmel Valley News

Students, community rally behind Solana Highlands firstgrader and encourage everyone to‘LIVE LIFE TO THE MAX’
By Janice Coy

Students at Solana Highlands Elementary School who are learning about caring as part of the Six Pillars of Character program have had the opportunity to participate in a hands on manner by showing their support for a fellow student with cancer.

First grader Max Mikulak is battling a recurrence of neuroblastoma (NB). The six year old was first diagnosed with the cancer, which attacks the bones and their marrow, three years ago. His initial treatment killed all evidence of the disease, but last fall, a bone scan showed new spots of it on his spine.

Max is currently taking an oral form of chemotherapy and is able to regularly attend his first grade class where he is taught by Lisa Sturt.

Max’s mother, Melissa Mikulak, said the boy’s teachers have been very supportive of him and the family. This fall, Sturt asked the family if she could spearhead a fundraiser for the Magic Water Project, a non-profit organization that funds clinical research trials for patients with NB.

As part of the fundraiser, the school sold orange reminder bracelets embossed with “LIVE LIFE TO THE MAX” for a suggested donation of $5 each. Sturt said $10,707 was raised, and 1,379 bracelets were sold. Orders for the bracelets were closed out last Thursday, but Sturt said donations could still be made to the Magic Water Project at http://www.magicwater.org/.

“With September being Childhood Cancer Awareness Month,” Sturt said, “we thought this would be a tremendous opportunity to show Max and the Mikulaks how much we care.
Sturt said classes at other schools are participating in the fundraiser as well, and Solana Highland families are “spreading the care beyond our community” by sending bracelets around the country and abroad.

“The outpouring of generosity and kindness has been overwhelming and there’s not a child or family that deserves it more,” she said. “The Mikulaks are always smiling and positive. They find the good in each and every situation.

“They have learned that each moment is precious.”

Andy and Melissa Mikulak have lived in Carmel Valley for five years with Max, their 8-year-old daughter Hannah, who is in third grade, and their 2-year-old son Nicolas.
Mikulak describes the caring as incredible and heartwarming. Last year, she said, Max’s kindergarten teacher, Ms. Wietz, also spearheaded a fundraiser for the Magic Water Project and raised $10,000.

“It’s a really, really great feeling to have so much support,” she said. She stays positive, she says, because “it is simply the only way to get through a crisis, especially with children involved.”

Mikulak, said finding out about the cancer’s recurrence was “even more shocking” than the initial diagnosis.

“What you learn is that NED (no evidence of disease) doesn’t mean your child is cured,” she said.

Mikulak said it was Max’s pediatrician who first suspected that he had NB which was later confirmed by a oncologist at Rady’s Children’s’ Hospital. His symptoms included a low-grade fever that lasted for about a month, constipation and pain in his legs that caused him to limp.
“When we would go to pick up Hannah in kindergarten, he would ask me to carry him, “ she said. “Eventually, he would lie in bed and couldn’t even get up to go pee.“It was horrifying.”

Mikulak said it is not known what causes NB, but research has shown that, while it is not genetic, it could be triggered while the fetus is growing nerve cells.

After his initial diagnosis, Max underwent chemotherapy and a stem cell transplant.There was no evidence of the disease afterwards.

“There is no treatment protocol for recurrent NB,” Mikulak said. “There is no cure for it, so there’s no real protocol.”

When the spots on Max’s spine multiplied, the Mikulaks decided, with the oncologist, to follow a treatment of 11 rounds of high-dose chemotherapy. Max lost his hair and had to miss 40-50 days of kindergarten last year because the chemotherapy suppressed his immune system. At the beginning of the summer, a bone scan showed that the cancer had shrunk.

“Last year he was completely bald, and sometimes he would have to wear a mask to school,” Mikulak said.

Despite his absences, his kindergarten teacher kept him a part of the classroom by visiting his kid-friendly blog with the other students. Max’s Web site is http://www.mikulak.org/. Mikulak said the teacher also came to the clinic where Max was to do homework with him.

“With the oral chemotherapy, his blood doesn’t get blasted, so he is able to participate in activities,” she said. “There’s actually fuzz on his head which is exciting.

“He goes to class every day. His mental health is just as important in helping him get through this so we allow him to do whatever activities he can.”

Cloud 6 on the Horizon?

Gee, we have all these posts as of late, but nothing about Max and his battle. Let me get you up to date.

Max is feeling great. Home chemo is way easier on a kid than IV blasts. But you have to do what works. He’s been having a lot of nausea/vomiting since the Etoposide chemo was added to his daily meds. Of course, we didn’t figure this out for about three weeks. Kids don’t seem to have the capacity to recognize when they feel nauseous all the time. Dr. Roberts prescribed an additional anti-nausea medicine last week and Max seems to be feeling better because of it. He ate a hotdog Friday night and 4 pieces of sourdough at the Fish Market on Sunday (he hasn’t taken any food by mouth in 2-3 weeks).

Thank goodness for his mickey-button or the kid would have wasted away by now. We continue to give him 1500ml of his formula along with 400-600ml of veggie-brew daily. Yesterday his weight was up again to 19.0kgs. 41 pounds. Can I hear a “WOO-HOO!” Alright!

Today is Tuesday and it’s 7:30am - I’m at the hospital right now with Max. He’s in for an MRI. Max loves MRI day. Kooky-kid. I think he enjoys riding on the gurney down the halls and waking up to popsicles, graham crackers and a Disney movie afterward. He had an MIBG bone scan last week. Both are to track the spot on his spine that has remained unchanged over the past 5-6 months. It appeared on last weeks’ MIBG, which I can see while he’s having the scan, that the spot is still unchanged. This is good news – no growth.

Can anything be done to further diminish the spot? It’s bugging us a little that it’s just sitting there seemingly taunting us month after month.

Luckily, Max was on the nifurtimox trial so we have the added benefit of another oncologist – and NB specialist – to review his scans. Dr. Sholler suggested zapping the spot with another round of radiation could very well take him to NED status again (NED = No Evidence of Disease). I spoke with Max’s main oncologist (the extremely helpful, knowledgeable, and patient-with-neurotic-parents-who-email-him-daily Dr. Roberts) who spoke with Max’s radiation-oncologist about the possibility, and it looks like it is definitely doable. We’re now just waiting for an appointment time.

So, yeah, NED. What awesome news. We’re saying prayers, crossing our fingers and toes, wishing on stars, shaking chicken feet over Max while he sleeps… looking for good vibes!

Wear Your Care Update 3

This morning closed Mrs. Sturt's Wear Your Care Fundraiser for Max and the Magic Water Project (this doesn't mean you still can't get a band!). I betcha wanna know how many bracelets were sold and how much money was raised... Before I tell you, let me share some other gems with you:

• There was an all school assembly to celebrate the caring attitude demonstrated by all the students at Solana Highlands - not just for this incredible fundraiser but for the caring they showed each other all month long.


• Most of the kids and parents were wearing orange, as well as their Live Life to the Max! bands.


• A mom-friend of mine brought a bag full of orange hairspray to decorate the kids with.


• People from 20 other states in these United States of America ordered bracelets through this fundraiser.


• Bracelets were also sent to about 10 countries far and wide including Iraq, Sweden and Asia.

And the numbers are:

Max and Hannah unfurled the total: 1379 bands were ordered and $10,707 was raised! But there's more! Mrs. Sturt is still receiving orders for the orange bands - as of this morning those orders pushed the total to almost $10,900.

Mrs. Sturt, still flush from the amazing outpouring of love from our community, surrounding schools and world in general, revealed her next fundraiser for Magic Water (as modeled by Hannah):

Magic Coins for Magic Water: a little change can do magic!

Magic Coins is a way for kids to keep on giving - even if just a little bit. Every classroom in our school will have a jar with the Magic Coins logo on it and they drop coins into it whenever they can. I think any school could do this fundraiser - don't you?

If you are interested in ordering a Live Life to the Max! band, please send a donation of $5 per band (or more!) along with a double-stampled SASE to: Mrs. Lisa Sturt c/o Solana Highlands Elementary School, 3520 Long Run Drive, San Diego, CA 92130

Thank you everyone. Today was a teary day, but for good reasons!

Ms. Weitz * Mrs. Sturt * Ms. Mulvaney -- sporting their Wear Your Care!

Max Deux

Here's a post from another mom on the east coast who has her own little Max battling NB (Max Palmer). It feels so good to see so many NB parents liking what the Magic Water Project is doing for our kids.

September 24, 2007 at 01:28 PM EDT
Hi everyone- This isn't really a medical update though Max seems to be continuing on the bumpy road with some great days and not so great days. Today was a good day so we'll take it. Keep those good vibes coming!

We just wanted to let you know about a cool kid named Max Mikulak who lives in sunny CA and is also fighting neuroblastoma. His 1st grade teacher is selling orange “Live Life to the MAX!” wristbands to raise money for neuroblastoma research. (I think they look like the livestrong bracelets). He has such a great teacher and school – every kid in his school bought one to support him.

The proceeds go to a really amazing organization called the Magic Water Project (link) which helps move ideas for treatment from the labs out into clinical trials that aren't getting funded for children to participate in. Its run by a smart group of parents and doctors like a venture capital- they research the ideas and selectively fund the ones that have the most potential.

Anyway, since WE have an inspiring little Max in our lives too- I talked to Max Mikulak's mom and am jumping on their idea. If you are interested in a bracelet to support the Maxs and a great cause, send $5 per wristband along with a double-stampled SASE to: Mrs. Lisa Sturt c/o Solana Highlands Elementary School 3520 Long Run Drive San Diego, CA 92130

Vermont

It's Andy. I thought I'd post a quick update on my weekend trip to Vermont. The purpose was to get together parents - Neil (Sam's dad), myself, Pat (Will's dad), Terrill (Paul's dad), Ranan (cancer dad from NYC), and of course Meryl (Andrew's mom) - together with some researchers and clinical oncs - the incredible Dr. Giselle Sholler and Nick Heinz, PhD from UVM, Laurent Brard, MD/PhD from Brown, Jim Jameson, PhD from Kent State, Dr. Dan Durden from Aflac/Atlanta Children's Hospital and Dr. Sholler's lab staff including the wonderful Genevieve Johnson who always gets us our nifurtimox pills the next day after we ask for them :)

The purpose was to put together a MagicWater Project roadmap for 2008. Here are the outcomes (I'm sorry its so brief but I'm tired, I'm now in NYC and I have lots more work to do tonight and meetings bright and early):

1. Agree to meet every 3 months (may be obvious but not so when you consider work, treatment, etc)!

2. Begin to test 4 different "oxidative stress" compounds in mice that would 'turbocharge' chemotherapy (like Nifurtimox does) as well as be used in a maintenance treatment once the child got to NED, in order to see if there are additional agents that we could add to or substitute in case our current treatments stop working or a child relapses again. Those agents are:
- Vit C/K3
- Rapamyacin
- Artemisinin
- Omega-3's (yeah, fish oil)
- We may also try tetrathiomobylate

3. We also want to investigate the timing or chronotherapy component of administering agents. Some studies show that up to a 40% improvement can be made just by optimizing the time of day when an agent is administered.

4. Lastly, we agreed on a Phase II Nifurtimox trial, as well as a Phase II Nifurtimox trial for NED kids, so that we can see if giving Nifurtimox will help kids stay NED.

Obviously all of this is going to cost money. The Phase II Nifurtimox trial alone will probably cost at least $400,000. But, its worth it, and I'd dare say the readers of this blog would agree.

The best, I've saved for last. Please check out these two websites. Both of these amazing kids Neil and I met this weekend.

The first, Eden Brunskow, lives in Tustin Hills, CA but for most of the last two years has been at MSKCC. She is the second to last child to go on the nifurtimox trial. Neil and I, after taking the red-eye to Vermont Saturday night, dropped by the RMH in Burlington to meet Eden and her dad Paul. Neil knows Paul already but neither of us have met Eden, nor where we prepared to fall in love so quickly with her. She is absolutely darling and one of the cutest kids we've ever seen. She was so talkative and smart, entertaining us with stories of gophers and halloween (her fav holiday).
http://www.caringbridge.org/visit/edenbrunskow

The second child we visited right before leaving the campus of UVM on Monday. Dustin Cobb is the last child to get on the nifurtimox study (15th). He's had a tough time as of late and was in-patient with an infection when we stopped by to see him. Dustin's a cool dude that loves to play shoot-em-up video games. He also seems to enjoy getting tickled by the nurses and Dr. Sholler. Neil asked if the nurses and Dr. Sholler would tickle him but they declined.
http://www.caringbridge.org/ga/dustincobb/

Please visit both of these children's sites and let them know you're pulling for them both. I'm sure they'd love to know you've read their story.

More on Vermont later later (like maybe this weekend).