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.