Mine! Mine! Mine!

Ever have a fit of parking lot lunacy? Well I'm here to tell you that you just feel better standing up for yourself when something like this happens:

The kids are off school one day and we decide it would be fun to meet daddy for lunch at Souplantation. Apparently everybody thought Souplant was the best choice that day because there were simply no parking spots to be found. Usually we have a great amount of parking-karma and find a spot quickly no matter where we are. This day, however, I think our karma went the way of the bars on my cell phone... going, going, gone. We (me and the kids) literally drove through the stupid lot for over 10 MINUTES! My eyes were practically rolling into the back of my head at this point.

Ahhh! Finally, someones leaving and I'm the car in line to take it. Blinker on. Waiting. Cars passing me while I wait. Okay, car is backing out finally. Another car passes me... HEY! That a#%hole just pulled into my spot! Throw the econoliner into park, emergency brake on, "You kids keep your belts on!" I'm outta the car and banging on the a#%hole's window before he can even get his car turned off. He rolls down his window with a look of surprise on his fat little face and I lay into him, "I have been waiting patiently with my blinker ON for this spot and if you think you can just zip around me and take it you've got another thing coming buddy because I've got three hungry kids in my car and we've driving around this lot for ten minutes. You are rude and inconsiderate and you'd better move this car right now!" Man in car is catching flies in his mouth the whole time I'm in rambling-mode. So I finally shut up and he comes back with this ever-so-witty remark, "All you had to do was ask nicely." He's lucky I'd already started walking away because I would've gone into my "ask for what nicely?" rant at that point.

He moved his stupid little car and I got my spot. HA! Oh yeah, he didn't eat at Souplant that day.

Why do things like this happen when only one parent is home?

Last night Andy had a dinner meeting with some guy (no offense!). While he's gone the proverbial shit hit the fan at home.

The kids are having a great evening. Dinner's done. All three of them are tearing around the house playing catch-me-if-you-can or some such nonsense. Time to give Max his supplements and night time meds. So I call him over to the table, we're chattin', putting all the syringes of meds into his mickey-button. We finish up and not 30 seconds later he gets a look on his face and says, "I'm gonna throw-up!" No throw-up bin within reach. Barf! All over the chair, down the leg and onto the rug! Touchdown! Yes, there is some on Max which is really grossing him out. Poor kid is hysterical. "Get me something to drink!"

About this time, Hannah & Nic come running into the kitchen - and right back out again. Hannah takes Nic upstairs for me. (Thank you, girl!) Max is calming down, we've got the paper towels out wiping him up, when I hear Hannah holler, "MOM! NICKY HAS DIARRHEA!" Oh, okay. Uh. My hands are full. "Hannah, read him a book, I'll be there as soon as I can," I call back. CRAP!

A few minutes later Max is feeling better, cleaned up, throw-up pants off (throw-up is still all over the chair and floor - I mean, I've got diarrhea to deal with!). We head upstairs and are welcomed by an incredible stench wafting through the hallway. Terror starts to strike me in the chest as I walk quickly toward Nicky's room. I can hear Hannah reading a book to him very calmly. I enter the room. I see Hannah in the rocker with a book and Nicky on his back on the changing table, frozen in terror himself, diaper opened up and poop exposed to the world - but still primarily in the diaper! Woo-hoo! (Funny how that could be a happy ending.)

Hannah was so please with her helpfulness, I couldn't help but smile at her. This, of course, is the first time she's ever touched one of his diapers - AND she had to take his jammie pants off, too.

Parenthood... good times.

hrumph...

What is wrong with me? I've been in such a funk this month - possibly longer than that. I feel like I'm chasing a car that I just can't keep up with - it's just out of reach, but the faster I run the further ahead the car moves. And why is this happening? Max is getting better and he goes to clinic way less often. Shouldn't I be feeling great? Getting more done and having more time since we're not at the hospital all the time? Well, nothing's getting done. The piles just get bigger and bigger and more appear. The faster I move the faster they grow. The weight of it all is pushing down on my chest somedays and I just want to curl up in a ball in a corner and sleep for 12 hours. I'm forgetting things; forgetting to do things - that are actually written in my agenda! I'll look at that book several times everyday and still forget to do something. The kids are sleeping well at night, so I should be too. But I'm wondering if I am - I wake up every morning tired and I'm tired all day. I could sleep hours more - if I knew there wasn't a list of things to do that was growing by the minute waiting for me. Good thing I'm wating my precious time writing in my blog...

Craptacular Morning

Andy's off in Vermont and NYC for a few days. Monday morning was complete mayhem here. I sent Andy an email detailing the happenings so he wouldn't feel so far from home. (I can read this now with a smile on my face.) Here's the email:

Oh my gosh... worst morning ever with Max taking his pills. We had a great talk last night (Hannah, Max & I) about cooperating and getting things done that have to get done before school, including taking Max's pills - which were an issue Sunday AM, too.

Everything's great this morning. Kids all slept in until 6:30. Got dressed, made their beds, brushed their teeth (without me asking, by the way). Hannah gets her own breakfast. They're all getting along! Wow! This is awesome.

Then I hand Max his pills (it's only 7:30) and he immediately starts up [tantrum]. We had the biggest power struggle... it was just ridiculous. He got so worked up that I put the other two in the car (8:10 now) to wait. Then I come back in the house to see that he is throwing up all over the carpet under the table and continues throwing up in his bin until I'm sure he tossed all the food from his AM feeding (so much for those 350 calories). S#%T!!!! I have never felt so frustrated in all my life. I just wanted to scream scream scream!! So I said a few profanities under my breath over by the sink while emptying his barf bin, took several deep breathes, got him straightened up and in the car (he's perfectly fine by this time) and drove the kids to school (8:25) where Max proceeded to
take all his pills outside his classroom door in less than a minute. What the hell?

Cloud 9

I'm having a time of it right now. This past week or two has somehow been very trying for me. I'm tired. I'm inwardly stressed (out of my mind) wondering what's happening with Max's cancer. Is it shrinking? Is it stable? I know his markers (urine and blood) aren't showing any real changes for the worse, but will the fear - the wondering - ever go away?

I read Margo's post the other day (Sam Hutchison's Mom) about being on cloud 9 since his NED news. But then settling down on cloud 6, where the view is still fabulous, because she knows the truth of this cancer.

I'd love to be on cloud 6 with her. It's just so sad to think that even when your kid is NED (no evidence of disease) there is most likely an NB cell hiding out just waiting for a break.

Cloud 9 is therefore unattainable... until a true cure has been found.

High School Musical 2

I'll admit I haven't seen the movie and I don't think Hannah has yet either. I think the hype is fun and - believe me - the hype was on full throttle for the premier of HSM2 at Disneyland when we arrived Monday. The world premier was being held at our hotel! Yippee! There were special parades in DLand and more 'tweens than I've ever seen!

We moved into our peaceful, pool view room at the Grand Californian and settled down after a long, hot day at California Adventure Park. The kids were pooped and ready to sleep.

Uh, what's that noise? Peek out through the curtains... disco lights... loud speaker... oh, HSM2 Premier rehearsal at the pool. Are they kidding? Why am I paying a premium for this room if I can't even enjoy the balcony - no less my room!?!? Andy heads down stairs to find out what the hell is going on and how long we can expect this to go on... and on...

He calls me and says that we can expect tonight's rehearsal to last until 11:00pm. Tuesday, the entire pool area will be closed all day to host the Premier Party which will run to about midnight. Oh joy. Andy ends up downstairs working on getting us moved for about the next hour. And, of course, it's never as easy as that. They wanted us to check-out in the morning and re-check-in later in the afternoon. "Sorry, we're planning on entering Dland early with our hotel-guest-is-special-pass, so that is not going happen. Also, our little one naps in the early afternoon so it looks like we'll be ready to switch rooms in the afternoon. In addition to that we'd like an appropriate credit on our bill to reflect the inconveniences." In the long run they came through, but what a pain the butt.

Thanks High School Musical! You Rock!

Tears

Wow... I just found myself with tears streaming down down my cheeks while looking at photos of Max at his kindergarten end-of-year carnival. Here are all the kids running around having a great time - Max included - eating popcorn, doing a cake walk, mining for gold, fishing... and Max is wearing a surgical mask because his counts we're low that day. I dunno. It just struck me as so sad.

Childhood Cancer Act 2007 - HELP

Just posted on ACOR by another parent. You can help; pass it on...

http://www.curesearch.org/support_curesearch/raise_awareness/ See this page for information regarding ways to help raise awareness about childhood cancer and direct links to contact your congressman and senator.

I just called all the Representatives from our neighbor state of SC. I was distressed that most offices, even their healthcare aides, acted like they had never heard of the Conquer Childhood Cancer Act. We need to change that.

It is so easy. Go to www.house.gov to get a list of your representatives by your zipcode (top left of page). It allows you to click on each member to get their webpage which will contain their contact information.

Call their Washington office. Ask if the Congressman plans to co-sponsor the Conquer Childhood Cancer Act of 2007. I told them in a few sentences why it is important, e.g.

"It is vital that Congressman X support the Act because cancer is the number 1 disease killer of children. Current budget cuts have resulted in clinical trials being closed for our children. As the parent of a 4 year-old with stage IV cancer, I strongly urge Congressman X to co-sponsor the Act."

I wrote the following to my rep:

Dear Mr. Bilbray,
I am interested in knowing if you plan to co-sponsor the Conquer Childhood Cancer Act of 2007.
I am a parent of a child with a stage IV recurred cancer that currently has no cure. We believe there is a cure out there - it simply hasn't been tried. Current budget cuts have resulted in clinical trials being closed to our children. We need your help.
As a cancer parent, I strongly urge you to co-sponsor this Act. Thank you.

Survival Rates...?!?!

Augh! Could we please stop talking about survival rates?

Recently there was a parent NB Conference in Chicago. A lot of the parents who post to ACOR attended and were dazzled by different doctors and their respective trials, treatments and ideas. The doctors are continuously bringing up "survival rates" in relation to their studies and the parents just glom onto this crap like its the word of God himself.

Please stop being bamboozled by these doctors! How long do we have to be in this fight against neuroblastoma before we all realize that some kids just luck out become NED? Somehow they were able to defeat the cancer on whatever treatment they were on - just by luck. No ONE treatment works on all the patients. This cancer is elusive and all the doctors have to attest to that. This crap about MSK having a 60% survival rate with one of their studies is just that: crap.

And while I'm going off I may as well mention that I'm sick of hearing about the "Big-4" doctors bad mouthing Dr. Sholler and her studies. It's hard to believe that in the fight to save childrens' lives there are politics, but there are, and these Uber-Docs are threatened by her, her studies, her findings, her commitment to saving lives without ruining quality of life in the process. (They're worried about losing out on more study patients and money.) Did you know that a certain doc applied for a grant through Alex's Lemonade Stand but was denied? Hmmm... who are the doctors doling out the money from that fund? Look it up.

I know there's a cure for NB - it just hasn't been tried yet. The big treatments only work for a few - and there's no rhyme or reason for it.

I have no graceful way to end this rant. But I feel better...

Rear Ended!

This is my addition to the post of Max having to check-in to the hospital for a post-chemo fever.

So I get the call from Max's teacher Wednesday afternoon that he's not feeling well and wants to lay down on his mat in class and take a nap. I'm in Encinitas (a good 15-20 mins away) finishing up grocery shopping and getting a last minute gift for Andy's birthday which is also today. "OK, I'm on the way!"

I pull Max and Hannah out of class about 15 minutes early and head home. Max feels like crap, has a fever, and wants to go to bed. OK. This will leave me with only two kids to deal with while I get bags packed for a stay at the hospital, make all the appropriate phone calls, and try to keep focused.

One hour later we're finally in the car. Max feels crappier. We jump on the freeway and, oops!, afternoon traffic. Whatever. I'm calm. It just took 15 minutes to drive 4 miles. Thump! Oh my gosh! I've just been rear-ended by some tiny car! I don't have time for this shit. Doesn't this jackass know I have a kid with cancer in my car and he has fever? Ugh. I sure hope he's calm and can just give me his insurance info and get going. Me and the jackass are pulling over to the emergency lane. Hey - wait a minute... he just took off on the exit ramp. Oh, nice. He's even flipping me off. I pull back onto the freeway. Joke's on you jackass. This is exactly why I have a trailer hitch on the back of the econo-liner. He'll get his when he see's what my hitch did to the front of his car.

By the way - no damage to the econo-liner or any of us. Ha Ha.

Happy Birthday to Me!

Ok - I write this with a smile.

Yesterday was my birthday. The kids had made me cards, Andy brought home the first ice cream cake the kids had ever had. It was really fun. We had spaghetti dinner per Max's request and then cut into the cake! I thought Nic might burst - that kid knows what chocolate is! So we're a few bites in the cake when Max say's, "I have to go poo!" Well, due to Max's digestive problems that means I have to collect a stool sample.

Good times.

100% Life

There've been lot of posts on acor this past week about "statistics" in relation to survival rates for NB kids. 30% this, 15% that, and everything in between. I think we (nb parents) all know that the stats are all make believe once your child recurs - there are no stats because so few children live and there's no rhyme or reason for why a few do live. A lot of parents agreed that there was only one stat: 100% or 0%. Your child will either live or die. And for a few days I agreed with that. But then I go back (as I do again and again) to all that I read in The James Emails and I think, "there's a lot of living that can be done between now and then, if then ever even comes." (Which, of course, it will for all of us.) So 100% or 0% is a stat for every person - everyday, don't you think?

Life and living is now. It's today. Life is making memories today that you can look back on tomorrow. Living is an adventure and everyday you have should be looked at with wonderment. Living isn't what's going to happen five years from now... it's what's happening now and we should all make the best of it no matter what hardships we have to bear.

That said, we're going to live 100% today and tomorrow and the day after that, and everyday day we can that follows.

Where does your donation go?

This is a really interesting article that was written last year by the father of a little girl who had neuroblastoma. It's all about the distribution of funds/donations made by the American Cancer Society and how little they give to pediatric cancer research - not to mention that none of it goes to NB research.

I've been digging up facts again on NB. NB represents 8% of childhood cancers diagnosed each year. However, NB also accounts for 15% of childhood deaths caused by cancer. Thats a pretty big percentage for a disease that no one's willing to help fund research for.

Here's the acticle taken from Shelby Prescott's Caring Bridge page: http://www.caringbridge.org/ga/shelbyprescott/

The American Cancer Society and Childhood Cancer Research Funding

The American Cancer Society’s (ACS) Relay for Life (RFL) is the world’s largest fund raising event in the world with some 4000 events in the US and many more in 7 other countries. More than 2.5 million Americans will participate in this event in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate over $400 million dollars with the expectation that their time and money will get us closer to a cure for cancer. But which cancers will benefit from that $400 million??

There are roughly 100 different types of cancer; each one using different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the ACS budgets their income (donations) according to largest need down to the smallest need. There will be about 1.4 million adults diagnosed with cancer this year. In contrast, there will only be about 12,500 children diagnosed. Also like any other financial entity, the ACS and RFL look for creative ways to promote their cause in order to maximize the inflow of funds.

Gwinnett County boast the largest Relay for Life in the world; raising approximately $2 million dollars last year by about 10,000 participants. To promote the Relay, organizers search for “Honorary Chairpersons”. People who have battled cancer and survived or are still battling cancer, but are survivors! The Honorary Chairpersons are presented at a large kick off Pep rally with guest speakers, recording artist, testimonials, and all the fan fair. They’re paraded across a stage for all to see who we are fighting for. We want to help these people! At the 2003 Relay, my 4 year old daughter Shelby was an Honorary Chairperson. There were 20 that year - Nineteen children and one adult. Shelby was the youngest. Shelby was diagnosed with the childhood cancer, Neuroblastoma, on November 30, 2001. Only about 600 cases of Neuroblastoma are diagnosed each year. Half of these children will die within 5 years. Since Shelby participated in the Relay for Life, I have learned a lot about distribution of donations within the cancer world.

As I mentioned before, the ACS distributes their funds according to the greatest need or the greatest number of patients effected. According to the ACS’s funding chart for 2002-2003, $132 million was given to cancer research. Only $7 million was given to childhood cancer research. Total donations for the same time period was close to $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides, and many other help programs, as well as fundraising efforts salaries and other executive expenses. One side note, when we tried to get a brochure on programs for children diagnosed with cancer, there wasn’t one.

Anyway, back to distribution of funds. If you had donated $100 to Relay for Life hoping to show your support for the honary chairpersons, $12.47 would have gone to research adult cancers while only 70cents would have gone to Childhood cancer research. How much of that 70 cents would be for Neuroblastoma research? None! Let’s look at this from another angle. Gwinnett RFL’s group of Honorary chairpersons is made up of 95% children but only 0.70% (that’s right, less than 1%) of the donations will go toward childhood cancer research. I think there’s something wrong with this picture. Don’t you?

I’m not trying to get people to stop donating and participating in Relay for Life. The ACS does a lot of good for the adult world of cancer. But if you see a bald child suffering from cancer and feel compelled to help cure childhood cancer, please research organizations that put children first and support those organizations. When Shelby was first diagnosed, the drugs used in her protocol were all “Hand Me Down” drugs developed and tested for adult cancers. Once they went through the 5-10 years of testing to be FDA approved for adults, they had to go through another 5-10 years be retesting and re-approval for use in children. Not one drug that was used in Shelby’s treatment was designed specifically for Neuroblastoma….. or any other childhood cancers for that matter.

Here are a few of the many organizations that I would recommend: CURE Childhood Cancer; The Aflac Cancer and Blood Disorder Center at Children’s Healthcare of Atlanta; Cure Search/NCCFAngels in Atlanta; The Children’s Neuroblastoma Cancer Foundation; Alex’s Lemonade Stand Foundation; St. Jude’s Children’s Research Hospital. These organizations are strictly dedicated to Childhood Cancers and other life threatening diseases in Children.

You may think that I’m biased because I’m the parent of a child with cancer, but I also need to tell you that my wife was diagnosed with breast cancer in October of 2005 and her mother died of breast cancer 9 years ago. There is a huge need for funding in all areas of Cancer research, but please take the time to pick the right organization to put your money into. If it’s Breast Cancer research or Colon Cancer research, by all means, get a team together and walk in the Relay, but don’t walk in memory or honor of a child. It will only be a waste of your time and resources.

Shelby Prescott was a kindergartener at Gwin Oaks Elementary School in Gwinnett. She died October 22, 2004. She was 2 months shy of her 6th birthday.

Getting Through It

It's funny how some of the simplist words can bring me to tears.

"If God brings you to it, He will bring you through it."

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Pulitzer Prize Winning Photo Series Features NB Patient

I have not looked at these photos, because I can't. I understand what happens to the children that die from this horrible disease - I've read much. If you think you can handle this perhaps it will prompt you even further to help us find a cure for neuroblastoma.

This was posted to ACOR by Jennifer Crowley, an NB mom who's son became an angel six months ago:

I am pasting a link below to a simply heartbreaking yet brutally real 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.
Having lost my son only 6 months ago and knowing that others on this list have also recently lost their children, while others are receiving palliative care, just a word of caution that these may be too much to look at (as I sit at my desk wiping my tears) right now - but they are amazing.
My heart goes out to Derek and his mom. I apologize if this has been posted previously, but I don't recall seeing... Part of me feels like... finally, some attention to how ravaging this disease is.

http://www.pulitzer.org/year/2007/feature-photography/works/index.html

Top 10 List Additions

From various parents after being inspired by Margo's List:

• You carry a tube of Emla (skin numbing lotion) in your purse instead a tube of lipstick.
• Kids with hair look kind of strange to you.
• You can sleep anywhere, and anything that reclines more than 15 degrees looks "comfy."
• You don't realize the sharps (syringe) container is on the kitchen table until halfway through dinner.
• You enjoy the drive at 3:00am to emergency because there aren't any other cars on the freeway.
• Your child's first word is a medical term.
• Your child's bedroom looks like a Toys R Us store.
• You have a syringe in your purse and you're not a diabetic .
• You start teaching your daughter the parts of her body, you point to her chest and she says that's her port.
• Your kid won't let YOU touch anything in a public restroom.
• You don't have to give your name at the local pharmacy counter, they just say hi and grab the meds.
• You keep completed copies of each department's intake forms in your purse to save time. Just date and sign.
• You know more about nurses holidays and vacations than your immediate family.

A Funny: Top Ten...

I stole this from Margo Hutchinson:

Top Ten Signs You’ve Been Fighting NB Too Long

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’tmake 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 doctor 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.

Speaking of Quality of Life...

So all this bad news, it gets me thinking. Are we doing enough stuff with Max? Are we as a family putting forth the extra effort to do lots of great stuff together while we are all here relatively healthy and able? I don't want to remember this time in our lives as a time of "great sickness" and hospital stays and blood draws and chemo treatments. I'd like to have better memories that over power those. Like lots of trips to the zoo, sea world, train museum, disney, things the kids love and that we love when see it through their eyes. Riding an elevator up and down for no other reason than it's fun.

Gonna make it all happen.

Money is what is boils down to.

Did you know that not too long ago if your child were diagnosed with leukemia they had only a 15% chance of survival? Now, with all the money that has spilled into leukemia research 85% of the children survive. Somewhere along the course of time someone got fed up and started raising research funds for leukemia and look what happened. Good things.

The same thing can happen for NB. It just takes a lot of money.

Too Much Information for me to handle

On Friday we (Andy & I) had the opportunity to attend an NB conference. The little bit of knowledge that I gained there (most of the speakers had very scientific presentations) has left me very drained emotionally.

Apparently we are so far away from finding a cure for this disease (especially once your child has recurred) that as parents we can only hope that the decisions we make now for Max will prolong his life and give him quality of life in hopes that a cure may be found before his time is up.

The conference was opened by our friend and fellow NB parent Niel Hutchinson who reminded the doctors and scientists there that there is a face to this disease and it's our kids. He choked up as he spoke to them about the urgency in which we need better treatments and a cure and that we (the parents) are "taking the steps to meet them in the middle of the dance floor." I realize now how important it is for parents to be at these conferences, to remind the doctors that this is about people not just about teeny, tiny cells in a dish. And of the urgency.

I met a family there, the Birrell's from Canada - Sid, Pam, Rebecca and Ben - who lost their son and brother, James, to NB in 2001. Sid wrote email updates to everyone that he eventually published as a book. I read it on the way home from VT. It scared the crap out of me to learn how fast this disease took his son, James. It also reminded me that we have to live each day to its fullest as a family and fit in all the fun we can now. The book is called "Ya can't let cancer ruin your day" and I invite you to read it because the book isn't just about the Birrell family it's about the Mikulak family and every other family fighting this battle. It will make you cry.

The conference was closed by Sid who had put together a slide show of his family during James' battle - that slide show was us. I cried and so did every other parent there.

I'm completely frazzled now (and unable to come up with a better description of myself). I'm angry, sad, depressed, lost. There is so much more I want to say but I'm too tired.

Max is too thin

Ok, so here we are at home, just back form Vermont where Max had a minor battle with the flu (like he can stand to lose weight or something). He hasn't eaten for about five days, nor have we been able to give him any of his medications because he either threw-up or everything went straight through him. Andy and I are at our wits end trying to figure out how to make him eat. So we just got mad at him. Told him to eat the damn chicken nuggets or spaghetti-o's OR ELSE. He's crying, gagging on the one nugget we're making him eat when he just throws up... throws up everything he had eaten and drank all evening.

Yeah, we feel like shit. Nice going you #@%! idiots.

So tomorrow I'm talking to his oncologist about getting him a feeding tube until we can find a way to make food appealing to him.

This whole thing sucks.

15,000 Kids Will Recur with Neuroblastoma this Year

Every 16 Hours a Child Dies From Neuroblastoma

"How's Max doing?" Part II

I hope I didn't scare anyone with my previous post. I wasn't angry when I wrote it - I just thought you should know (and I know from feedback that a lot of you wanted to know) what it is we're dealing with.

With that said, please continue to ask about Max and I won't question your motives because we're all on the same page now! I'll tell you about his day and you'll tell me about little Johnny's day and we'll get along just fine. ;-)

"How's Max doing?"

"How is Max doing?"

I get this question all the time. I'm not sure exactly what people really want to know. Are you asking about him today, like you might ask about Hannah? In that case, he's fine. He's probably at school playing with his friends, of getting a weekly check-up at the hem/onc clinic. He's not currently in any pain and his cancer is stable as far as we know.

Or do you want to really know what the hell's going on? Well, I'm gonna tell ya what's going on, because I really don't think anyone out there has any inkling of an idea of the gravity of Max's situation.

Neuroblastoma does not have a cure.

Only about 2 out of 10 kids that get this form of pediatric cancer will survive. The rest will battle this horrible disease for a year, maybe less, maybe for years and years of their life, before their poor little bodies finally succumb to it and all the treatments they've undergone to try to kill it once and for all.

This is what we're dealing with. Do I think about this everyday: yes, I do. Do I let this information run my life: No, I do not.

I think that Andy and I have been lucky in meeting the Hutchinsons, Neil and Margo, parents of Sam. Neil is a medical library when it comes to what's available for NB treatment out there, what's cutting edge, and what's just not working. He got the nifurtimox study started with Dr. Sholler and is looking into many other agents that may be beneficial to our kids. Andy is even on the playing field with the Geron study, introducing it to Sholler and getting the ball rolling for a pediatric trial on their drug.

There is a cure out there. We just have to find it for Max.

A nice reminder that there are survivors out there!

I wrote this in response to an email I received from an NB Mom who's child is NED (no evidience of disease):

Shirley - I don't know who you are but I'm so thankful to have received this Happy New Year email from you. My son, Max 5yo, just recurred with NB and we are facing the horrible reality of how few kids survive this damn thing. I can't tell you how happy I am to read that your son is alive and well. I wish I could hear from more parents in your shoes! Thank you so much for the great news.

She responded to me:

Dear Melissa, it was good to hear back from you. You don't know me because I don't post that often any more -- the details of Simon's treatment (98-01) are a bit out of date for those now in treatment. However, I decided to send my holiday e-mail to the newer members of the listserv in addition to the old-timers I'm close to. I was a bit uncertain about doing that, but I do want people like you to know I am available as a resource if needed.

There are many parents like us whose children are NED -- but most such parents choose to depart the nb world and try to live a normal life (who can blame them). I think there are only a few who have stayed on the listserv whose children are ahead of Simon. I know there is at least one parent of a long-time relapse survivor on the list. I feel it is important for those in the battle to know that there are many of us out here who so far are staying one step ahead of this beast.

I took a look at your website and enjoyed seeing the beautiful pictures of Max. I see you are a pal of neil and sam's! I have spoken several times by phone with neil, what a good guy. The picture of Sam and Max is priceless!

Neil would no doubt tell you with a chuckle that I am a biased fan of the mskcc nb team -- Simon did his entire treatment at mskcc, so you can understand we probably are a bit biased!! We do believe that the 3F8 antibodies and the hot antibodies are the main reason simon is still walking around almost 9 years from dx. We are still very close to the nb team and try stay abreast of what is going on there. In fact, I met up with Dr. Cheung about a month ago and was incredibly uplifted by his firm conviction that he IS going to save some relapsed children. We have seen tremendous progress in the past few years and I do feel a breakthrough is right on the horizon. When Dr. C says there is hope, I believe him.

We live about 30 mins away from mskcc by subway. SO, if you ever come this way, or if you ever have any questions about mskcc, please just drop me a line. Alternatively, maybe our paths will cross at the NB conference this summer. I've never been before, but I hear it's an incredible gathering, so I'm going to try to make it.

Mainly I want you to know that Max and your family are in my prayers. I hope this current treatment will do what is needed!! SENDING HOPE!! Very best regards, Shirley Staples

NB as a Business

A reply on ACOR from fellow parent, Neil Hutchinson, who's boy Sam is in treatment with Max here in San Diego for recurred NB. This guy is really on the ball.

Well, I think we should treat NB as a business and put together a business presentation for:

1. the myth of competing trials (to overcome the thought that "we can't have too many trials open or we'll never fill our trial" - good trials accrue patients :)
2. why it makes good business sense to put drugs into trial for neuroblastoma (Bayer, the manufacturer of nifurtimox may get a 2nd indication for this drug which could translate into a worldwide market; how many kids would this be, what's the money involved)
3. trial ratings (I think parents should develop a rating system for trial design; positive aspects should be intra-patient dose escalation, allowing kids who have had the drug before to get it again since they are often precluded, finding a way for kids that have limitations w/respect to platelets to have access to drugs). I think we can also use this to change the mindsets of the current NB doctors to design their trials in a more patient friendly manner.
4. then we contact the drug companies that have drugs we would like to trial. One company is Hoffman-LaRoche which has a drug called nutlin. If you search the ANR abstracts (and it's probably on Pubmed), nutlin is something that reverses the off- switch on the p53 tumor-suppressor. John London and I found out about this when talking to some oncs the other day. The company probably is just looking at bigger cancer markets but what if we call them and persuade them to get the drug into trial since I think much of the pre-clinical work is done?

The whole tone would be one of collaboration and positivity (I live a mile from Sea World and it's the old "how we train Shamu"). I think so much of what we have to overcome is simply awareness: if a company knew that parents would support a trial, they may just me interested in accelerating things.

How Niturtimox Became an NB Study Drug

A Post and Reply on ACOR:

Hey Shannon,
Good to see you on the list!
A couple of us got emergency INDs from the FDA to get the drug for compassionate use. I was the first to get it for Penelope and I have to say I was frowned at and not helped by the "experts" at all. They said their was not enough proof, not enough testing, not enough blah blah blah. All I knew was that my daughter was going to die very shortly and I could no longer listen to their excuses for inaction.
I had to get approval from the FDA, the Center for Disease Control and Bayer (the manufacturer) with virtually no help from the medical community. In fact, all the "experts" did was tell me Penelope would die very shortly, that I should "let her die with dignity", and that she would be very symptomatic of her disease in "weeks if not days". I lobbied Washington (Nancy Pelosi's office) and Congressmen and women to put pressure on the regulators to release the drug on an expedited basis. I managed to get the drug within 10 days!!!
When the "experts" told me Penelope would die shortly and I should stop treatment that was in August. Well now we are in December and Penelope is here and battling. Over these past four months we have got to see her laugh and play and enjoy things like her family, Halloween, Christmas and many other wonderful moments. She is actually today feeling very well as she sits next to me bathing her toy dogs and cats!
And Nifurtimox helped save Penelope's life as she had a huge response when combined with topo/cytox. It lasted a good 2 1/2 months when it stopped working for Penelope but it let us bridge to high dose chemo and antibody therapy.
The only doctor who helped at all was Dr. Sholler. She is terrific in every way. She is the type of doctor that is the future for beating this disease.....young, aggressive, operating with a sense of urgency, wanting to get things into clinic before years of perfecting research are complete because kids today have no real options for cure. From the time Neil Hutchison and I discussed the abstract on Nifurtimox that was part of the ANR conference until the time it actually became a clinical trial was about THREE MONTHS! So the next time the docs complain about how hard it is to get something into a trial, how many roadblocks there are and how many years it might take, just remind them that a couple of parents and a great doctor in Vermont got this trial going in three months. My guess is you will hear stunned silence in response.
Anyway, I just think it is so important for our voices to be heard by the "experts". Lets face it, their track record is horrible when after so many years hardly any kid ever survives relapse. We have to do better for these kids, give them more and better options ASAP and part of it is insisting these "experts" move with more urgency to save the kids alive today....they need to operate at a speed and aggressiveness they would move at if it was their own kid who had relapsed NB. And they are not doing that today despite what they say.

John

-----Original Message-----
From: The Neuroblastoma (Cancer) Online Support Group [mailto:N-BLASTOMA@LISTSERV.ACOR.ORG] On Behalf Of Shannon Snow
Sent: Saturday, December 30, 2006 11:13 PM
To: N-BLASTOMA@LISTSERV.ACOR.ORG
Subject: [N-BLAST] Med: Nifurtimox and clinical trials

Hey gang.
I don't have to constantly study any more. I don't have to have a plan B, or even a plan A. Though my relief from studying, worry, and fear is no consolation, Nick's relief from pain is my comfort.
I've been seeing a lot of talk here about this drug: Nifurtimox, and it has my curiosity tickled, so I thought I would check it out. The first thing I read about it was this:
"Nifurtimox (nye-FER-tim-oks) belongs to a group of medicines called antiprotozoals. It is used to treat an infection called American trypanosomiasis (Chagas' disease). Nifurtimox works by killing the protozoa (tiny, one-celled animals) that cause the infection."
It amazes me that anyone would think of trying this drug on Neuroblastoma. It appears to be treatment for infection causing bugs.
Then I learned that a girl with refractory NB got the Chagas' disease and was treated with the Nifurtimox, and as a by-the-way, went into clinical remission. !? It reminds me of the heart medication that ended up growing hair on bald men as a by-the-way. As Tevia's gramma would say, "GO DR. SHOLLER GO."
My hat is off to all the parents and children, and adults with this disease, willing to enter clinical trials. Standard therapy for NB just doesn't work well enough! Clinical trials are where we are going to find better treatments and even possibly the cure. I hate that trials seem so slow, and the rules are so persnickety, but for now, it's the only way to go forward finding the cure.

Shannon: mom to Nick Snow www.nicksnow.com

Cell Line Established

Another post to ACOR:

Just wanted to share great news! While we knew that the chance of establishing a new cell line was very small, we did not learn until this week from Dr. Reynolds that he only has about a 3% chance of getting neuroblastoma cells to grow! Dr. Maris told us that Los Angeles has better luck which is why it was done in LA instead of at CHOP. Now I believe it was nothing short of miraculous and I can't help but think our "mad scientist - little Christi" had a hand in this to actually work!
This morning's local newspaper has a huge article with many pictures about FU-NB2006. Although on the web there is only one pic (of Dr. Maris) below is the link to the story. We wish you all a Happy New Year and may the cure be discovered in 2007! Best wishes and much love to you all!!
http://www.advertiser-tribune.com/News/articles.asp?articleID=5702
Warmly,
the Thomas team Mom (Angela)
Angel Christi 5/1997 - 9/2006, forever 9
www.ChristiThomas.com

Parent Advocacy for NB

A post to www.ACOR.ogr from a fellow NB parent:

I think the idea of a parent advocacy group, well coordinated so that no one is working at cross purposes, is a fabulous idea. 99% of the leading nb docs just will not step outside their own self-made nb boxes. And our children are dying because of it.
Years ago I spoke with Professor Ronald Breslow, the developer of SAHA, and he was convinced that it would cure Bryan. Maybe he was right, maybe he wasn't, but we didn't get the chance to find out because of the archaic trial process. Adults first for several years, then MAYBE pediatrics. It's an outdated system and it needs to be changed. With the communication support of the internet and the research capabilities of parents like you & John I'm sure that a group of parents on a mission, well armed with facts & data, can have an impact.