Archive for March, 2009

JOHNNY EVENTS

Friday, March 6th, 2009

Here’s a rundown of some upcoming events organized by family, friends and maybe the City of Galveston — all of which need your support!

Race For A Wish – 4/25/09
Mike’s cousin Lucille, a teacher at Klein Oak High School, has organized her 3rd annual Make A Wish walk — this year event is in Johnny’s memory.  
Race For A Wish (5k run/walk)
Date: Saturday, April 25, 2009
Time: Sign-in @ 7:30, Start Time: 8:00am
Where: Klein Oak High School track
Early Entry Fee: $15.00 adults/$10.00 K-8th grade
Day of Walk fee: $20.00
Each Participant will receive a “Race For A Wish” t-shirt. Donations accepted! If your company or organization would like to be a sponsor (your logo on the t-shirt) contact Lucille. Not an early riser?  Can’t make the event? No problem — you can Sleep For A Wish and still get a tshirt!  Contact Lucille at: lrowley@kleinisd.net, or Patty pkravetz@kleinisd.net or Darla dsparks@kleinisd.net.

Rock The Cradle – 10/24/09
Our friend Barry is already planning his Rock The Cradle event scheduled for Saturday, October 24:
 wcsk8.com  or rockthecradle.wordpress.com
Last year Barry’s event raised 10k for the JohnnyKicksCancer fund.

The Jonathan M. Romano Memorial Skate Park – 3/26/09
The City of Galveston
And last, but far from least — The City of Galveston will vote March 26, at 4pm to rename the new Galveston skate park in Johnny’s memory.  Mike and I had no idea our friends submitted the proposal to the Parks Board who voted unanimously in favor of the proposal. I bought Sophie and Joey with me to the Parks & Recreation Board meeting, and we were touched by the number of people who came and showed support — in the middle of a work day!  Not sure how many people attend the meetings outside the P&R Board members, but this particular day was standing room only.  

Brax and Rebecca (authors of the proposal) spoke to the Board about why they wrote the proposal and what a great kid Johnny was, then Rhonda spoke in support as well. I tried my best to keep my composure while telling the Board Johnny’s story, what a special kid he is and how honored our family would be if they supported the proposal. One very sweet gentleman on the P&R Board spoke before they voted and said, “I know men aren’t supposed to cry, but this story really touched my heart.”  When the Board gave their ‘I’ vote, my ‘I’ was the loudest — of course it didn’t count, but I had to vote… 

Now it’s up to Galveston City Council to vote in favor of the proposal.  The Council meetings are always open to the public — I checked to make sure if I posted this information I wouldn’t get in trouble if a ton of Johnny supports showed up.  BRING IT PEOPLE!  Don’t forget to wear you Johnny stuff!  Mike and I think it’s incredible that our friends thought about Johnny and our family enough to do this, and it’s beyond words the City of Galveston supports us as well. 

Last Saturday night after the kids were asleep I decided to Google Johnny.  He still pretty much dominates the first 15 pages — with the exception of some old baseball player named Johnny Romano sprinkled here and there.  As I was surfing through my Johnny’s info, I stumbled across this:

johnnyromanowasthes**t

Just to let you know — I have no idea who these people are and they didn’t contact us for our ‘approval’.  As far as we know, money made from the sale of this shirt isn’t designated to any non-profits we support (MAW, GCRBC, TCH, etc…).

MAKE A DIFFERENCE

Tuesday, March 3rd, 2009

Strength in numbers!  If you would like to write the National Cancer Institute (NCI — they fund the most clinical trials) and ask specifically for more childhood cancer research funding here is the email address:

ncirecovery@mail.nih.gov
One interesting bit of information I learned about Bills and Acts — when the government passes an Act or Bill, that is only the first step.  Funding for them is the hard part — they must be voted on as well — sometimes years later!  
This is what I emailed them:
Dear NCI Office of Advocacy Relations:
I am a mother of three — two of my children will be luckily enough to have a long, happy and healthy life.  Our middle child, Johnny, is not so lucky.  At the tender age of 7, he was diagnosed with standard risk ALL.  The medical staff at Texas Children’s Hospital (3rd best children’s cancer hospital in the country) assured my husband and I Johnny would be the 80-90% of kids who make it to be a long term survivor and beyond. We considered ourselves to be one of the fortunate families because Johnny seemed to stay strong throughout most of his 31/2 year protocol.

Unfortunately, at the age of 10, and just a few months before Johnny’s protocol ended, his ALL relapsed.  During induction he became septic, then after numerous bacterial infections and fungal infections in his lungs his ’standard risk’ ALL morphed into AML.  Johnny lost his battle with leukemia on September 23, 2008 — or what would have been his last day of treatment had he not relapsed.  No one can explain why he relapsed or why his ALL morphed into AML.  The team of highly skilled professionals at TCH were amazing — they not only treated Johnny, they loved him as well.  

Johnny’s story is heartbreaking on many levels, but the fact that his cancer always stayed one step ahead of the best care on the planet is tragic. Until researchers have the funding to understand, learn and conquer childhood cancers, they can only attempt to treat cancer — one symptom at a time. Treating children using this type of ‘protocol’ leaves researchers, families and children always steps behind the ever changing cancer cells, never getting the opportunity to be in the lead — or at the very least, a chance to catch up.

Please don’t let childhood cancer research funding become a priority only when your child has been diagnosed. Use the funds allocated from the stimulus package to help researchers lead childhood cancer treatments, not the other way around.  

Warmest Regards,
Julie Romano