May 1 - brain tumor awareness

Another little boy lost his battle with brain cancer today.  His name is James and he was JUST LIKE TY.  I fell in love with him and followed him closely since the very first time I saw his picture.  I told his mom that I always end my prayers to Ty by saying "I love you.  I miss you so much.  Don't miss me, though, because you'll see me tomorrow."  I like to imagine a day in the life of a grieving mom is only a nanosecond in the realm of eternity where our children are, so for them, it really is as if we'll see them tomorrow.  My greatest fear from the day we learned of Ty's diagnosis was a vision of having to let go of his hand.  Won't he be so lost and worried without me?  Now I find comfort thinking that in the bigger picture it's as simple as: I'll see him tomorrow.  He is okay. James is okay.  It's just us poor moms left behind to keep dragging our feet through our days.  We help each other, though.  You help us, too.  Thank you.       

We'll search for more seashells tomorrow, baby

 
Today is May 1st.  The beginning of brain tumor awareness month.  Cancers of the brain and spine are the second most common types of cancer among children (after Leukemia) with some of the worst survival rates of all.  It is also the one that comes with the biggest price for survivors.  Radiation is necessary when battling most brain tumors, yet a child who receives radiation will likely have trouble reading, adding, subtracting and telling time - at a minimum.  Worse, they may have facial palsy, vision and hearing loss, speech impairments, permanent hair loss.  They are at risk for a stroke-like bleed to the brain that can happen at any time for the rest of their lives (it happened to Ty).  They are at risk of long-term radiation necrosis that can cause paralysis or even death (that happened to Ty, too).  Necrosis may not even start until ten, twenty, thirty years post-treatment.  It is one of the most difficult cancer-types to treat because few traditional chemotherapy's can break the brain/blood barrier (meaning, although it may be a systemic treatment it is still not powerful enough to penetrate the Central Nervous System). 

Our researchers are dedicated, but they have a long way to go.  Part of the challenge posed is lack of pediatric brain tumor tissue for testing.  And the research techniques are so limited compared to Leukemia (for example) because you can replace all the blood in the body, but most of the brain is vital and completely irreplaceable.  I am signing up to run the "Moving Towards A Cure 5K" again this year, to benefit Ty's beloved Neurosurgeon and his team of dedicated researchers at Weill Cornell.  I hope you will join Team Ty!  It will be held on July 27th in Flushing Meadows Park (Queens) Stay tuned for information on how to sign up tomorrow.  I hope you will run alongside me for all those that can't! 

With regard to the challenges facing the research world, I want to share McKenna's story with you all, as well.  I am united with her brave family and we are committed to win this fight together.  http://www.nbclosangeles.com/news/local/McKenna-Claire-Foundation-Brain-Tumor-Cancer-205692131.html

For anyone who hasn't seen this photo yet, can we just say in agreement... "WOW!"  I love Team Jack and his family with all my heart, and they love SuperTy.  We are all in this together and so many big things are on the horizon.  I just know it.  Whenever I feel defeated at the foundation, I drive home, crying, telling Ty I don't want to do this anymore... I just want him... and all I can see is him shaking his head and laughing at me as if to say, "of course you want to do this.  You have to do this.  For me."  And he's right. 

It's annoying that some of the posts on Facebook have used this as an opportunity to talk politics and poke fun of President Obama.  It's absurd.  I know you all can appreciate what a wonderful thing this is - thank you.  This is an awesome tribute to an awesome little man who will help raise awareness for all the kids like him.  And it worked!  Did you all see this amazing move in Congress as a result?

What Senator Deb Fischer talks about in the news segment below brings national awareness to pediatric brain cancer. By sharing Jack's story with the Senate, Sen. Fischer won the unanimous support for a resolution designating Sept. 26th, 2013, as National Pediatric Brain Cancer Awareness Day. Her words are beautiful and she is just radiating love for Jack and all our children. 

http://www.1011now.com/home/headlines/Sen-Fischer-Introduces-Resolution-to-Bring-Awareness-to-Pediatric-Brain-Cancer-204707131.html?device=ipad&site=full#.UYEPwOnZURg.facebook

I can't help but look at that picture and wish Ty, too, had such an opportunity.  That's just the mommy in me, wishing he ran the football across the finish line with his adopted football team, too.  That he shook hands with the President, too.  That he was still alive to use his fame as a vehicle to spread awareness instead of me having to share his story on his behalf.  All of my innermost mommy love is sincerely translated into pure pride and joy for Jack and his family.  What superstars they are. 

I know I am bombarding you with information tonight, but it is brain cancer awareness month and I felt it necessary to kick it off with a wealth of updates. 

As for me, I had a good day today.  Gavin was thinking about Ty a lot and that always makes me happy and sad at the same time.  When I dropped him off at school this morning I let him climb into the front seat while waiting online to drive up to the "drop-off" doors.  He loves it.  We call it "cruising."  Today he was sitting with his feet up on the dashboard and a grin from ear to ear.  Then he said, "Mommy.  Ty never got to go cruising."  No he didn't  There are a lot of fun things Ty never got to do.  Ouch.  At bedtime he was completely restless.  I was laying with him and I listened as he started whispering and mumbling.  When he kept doing it I turned to him and said "what are you doing? what are you thinking about?"  he said "I'm thinking about Ty.  I'm talking to Ty."  "Really?  About what?"  "MY BERFDAY!" he said so excitedly.  Then he asked me if Ty is five years old and how old he will be next birthday.  I told him that I like to think of Ty as forever five because it's such a fun age.  He answered by telling me this...

"Well, I want to get to be TEN because Wolverine is probably TEN.  Wolverine is ten and A MILLION DOLLARS probably."

How funny that the number ten is as big as a million bucks :)  Wolverine must be really really big.

G-Love with a BERFDAY present :)