Wednesday, May 1, 2013

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 :)


15 comments:

  1. You Ty And Your Family Are All Tucked In My Heart Forever.........I will always remember Ty's Beautiful Smile. <3 Kathy Brunelle, Mary Pallotta's Sister......All My Love & Prayers Are With You Always..

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  2. That "ouch" brought that sickening feeling in the pit of my stomach back again..I cannot imagine having to walk in your shoes...God Bless You Cindy. God Bless YOU!


    ~Michelle Hughes, North Ga.

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  3. How cool that Gavin talks to Ty like that!!! Children are much more clairvoyant than adults --- I be Gavin has the privilege of hearing what Ty thinks about his birthday gifts!

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  4. I am sorry for the loss of yet another child from this horrific disease. It is because of you and Ty and your plight, I mean FIGHT that makes me determined to help you spread the word and raise awareness. I will run beside you!! Well, maybe walk. I will keep looking for the updates. Never been to Queens, I will now! I have signed myself up for the Ryan McElroy 5k run/walk on June 9th and the boys (eddie, 6 & Evan 3) are signed up to do the kid's I mile! We will be wearing our Superty shirts and running (or walking, me ;) ) for Ty!!
    All my thoughts and love to you.
    Shawna
    Millbrook, NY

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  5. Please keep us posted about the run. I am so in! Love and prayers always

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  6. It is really nice seeing a picture of Gavin smiling, he is such a beautiful little boy.

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  7. I didnt know if I should post this, but after reading I think it is fitting. I am very connected to dreams and finally had a dream of Ty - it was brief. In the dream he was happy and laughing and much taller than I assumed he would be. I told him that he should go see you and how much you miss him. He said, but mama is right here. I asked him where (I could only see him, noone else) and he said she is over there with Gaga, he's crying again. I asked why is he crying and then Ty started laughing. He said because he gets mad that I am bigger. He always wants Daddy to carry him on his shoulders so he can be the big boy but Im playing with Daddy.
    That was all of my dream with Ty. In Heaven he is a big 5 year old. The way you carry him in your heart and keep his spirit alive down here, he has carried all of you up to Heaven with him.

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  8. Yes! Love the "tomorrow you will be together". Ty is ok waiting in that nanosecond!! But I pray for your heart because of the hurt & longing for you little guy. I am so excited for Jack too. Team Jack is how I came to know & love Ty. I started following & praying for Jack and they shared Ty's story and I have loved Ty ever since. Great things are happening!! Jack is carried that football for Ty too and all the others who can not. So awesome that people in power are listening. Who cares what letter follows their name. Politics ~ shmolotics!!! Just get something done for all the kids like Ty. Spent the morning with my 4 yr old boy at the nearby park just sitting enjoying the beauty of nature. The sights and sounds of spring. It was so lovely just thinking of the rebirth of everything and how little we are in the scheme of things and at the same time how big we are and can be with our actions in our everyday life. You my dear are big in your every day life. And you can & will keep doing great work. Ty did mighty mighty things in his short time and you will keep that going for him!! We listened to the birds and picked out the sounds of the different types of birds. Everything is so exciting to a 4 yr old. I kept thinking of you and Ty but today I didn't feel as sad. It was happy thoughts of your stories about Ty. Then what do we see??? A hawk flying over. Gotta love it!!! Super Ty in action in everyday life. :) Hang in there. I am praying for more good days for you, comfort & healing. Love, Christine S., OH

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  9. I saw the following excerpt below on a CB page for a little boy who died from Neuroblastoma. When I saw your post about seeing Ty tomorrow I thought about this and wanted to share it with you.

    (Peter 3:8 But, beloved, be not ignorant of this one thing, that one day is with the Lord as a thousand years, and a thousand years as one day.

    Out came the calculator... if I live another 50 years, I will only be away from my boy for 1 hour 12 minutes! So, now when I have a bad moment, I think back to that: 72 minutes!

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  10. As always I am crying...I just hate so much that parents have to go through what you are going through...I know life isn't fair but this is beyond that.
    I don't know why people aren't up in arms about this all over the place and upset all the time.
    I guess it's the whole ignorance is bliss.
    I just can't do it.
    But all the same I feel hopeless...kids are still dying and people aren't paying attention.
    But I know...change is happening.

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  11. Dear Cindy, I haven't written a comment in a while but that doesn't mean I don't think read your blogs or think of Ty. I keep the Ty's postcard on a bookshelf so all of family can see it everyday and remember how grateful we should be. How Ty was taken from his family way too soon and how much he had to endure. Love to you and little Gavin!

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  12. "We'll search for more seashells tomorrow, baby" was the most touching beautiful thing to read. I can't get those words out of my head today and it brings me to tears at the unfairness of it all. I am glad that for sweet Ty that tomorrow IS right around the corner :) ;) -

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  13. Ty I trully hope that you will inspire millions to follow your cause. I know that for me there is no one I consider more as a personal hero than you little baby boy. I love you with all my heart and I know that you are safe and happy and will see your mom in a second in your time. As per Gavin, I wanted to with you to remain strong and loving brother to Ty. You are our remaining connection to your brother. Love you million :)

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  14. Forever 5...Ty must have been poking at his Ga,Ga that night:)

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  15. Thank you for sharing such wonderful information!In my opinion, Keep a healthy life by consuming healthy food and doing exercise regularly is the best healthy formula.

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