Monday, October 24, 2011

Brain Tumors Suck


I don't consider myself weak, nor am I all that strong... but I do still cry often despite how amazing Ty has been doing.  I am sure that I will be so much better off, mentally, once Ty's scan on November 8th shows no evidence of disease.  Until then, I will continue to worry about his drooling and his eyes.  His eyes are just "off" ever so slightly.  I'm not the only one who mentioned it... Lou has been worried about his eyes, too.  His doctor says it can be from overall weakness as a result of the current chemo, and I have to believe he is right.  The cyclophosphamide he is getting this month has taken a worse toll on him than the previous meds - his counts are low, his hair is thinning and he has mouth sores - but Ty seriously never complains.  He is much more tired and cranky than his usual self, but other than that he laughs his way through the day.  

Today I was holding him while we looked through some of his toys in storage downstairs.  He saw a big basket with the parts to his trainset and asked me to bring it upstairs.  I shifted his weight on my hip and hoisted the clumsy bin onto my other hip.  As we were climbing the stairs, Ty was laughing like crazy.  I asked him what's so funny and he said... "Mama!  You Soupy Mom (super mom)!"  Best compliment ever.  If I were really Super Mom, I would be the one fighting the cancer and taking chemotherapy every day, not him.

The Circus
Yesterday we took the boys to the Big Apple Circus.  The entire event was sponsored by the Children's Brain Tumor Foundation, and the performance that day was reserved only for brain tumor families.  The fact that we could fill that tent had me so mad!!  It's so unfair - these hundreds of victims are innocent children!  There were 1,600 people in attendence. 

Brain and spinal cord tumors are simply devastating.  They can steal the ability to walk, talk, eat and see straight.  They damage cranial nerves that are responsible for facial expression.  They impair learning, memory, coordination and balance.  They strip kids from being able to be themselves.  Just when I was starting to tear up over the realization of how widespread this is (and the circus tickets were only distributed through a small number of NYC hospitals), a gentleman from the CBTF board of director's came out to welcome everyone and kick off the show.  He had his young children with him.  He is an 18 year brain tumor survivor and I would have never guessed it.  Awesome!  That's what I want Ty to do.  To never forget, to talk about being a survivor, and to be active in helping to find a cure some day.  I don't want to ever put all of this behind us.  I want to carry it into our future.

We weren't allowed to take photos inside the tent, so I don't have anything to share at this time :)

The Guardian Brain Foundation
While we are on the topic of brain tumors, I need to talk about Mary Pallotta.  She is the founder of the Guardian Brain Foundation.  Although we still have yet to meet in person, she is like family to us.  She created this foundation to honor her brother who passed away way too young from an aggressive brain tumor.  She sends the most endearing notes, we have the most heartwarming and supportive conversations, and she has given countless gifts to Ty and me that will forever be cherished.  She is so special and I admire everything she does.  The Guardian Brain Foundation has done so much to support my family through all of this, and it is 100% a volunteer effort.  If you live in Long Island, she will be hosting the annual Butterfly Ball on November 18th.  Please consider attending, it is a wonderful event.

Fordham Football
Ty's big day at the football stadium is fast approaching.  We hope to be able to attend the big game at West Point this Saturday.  Ty and Gavin both have football jerseys and they have been throwing the ball around to get ready (the best they can, anyway).  In the meantime, I wanted to share this article with you all that ran in the Fordham Newspaper right around Ty's birthday.  A friend shared it with me just today, I was otherwise unaware.  I think it's such a sweet article on Ty and his relationship with the team through Friends of Jaclyn.  We can't wait to see them all again!

Marathon Training
Lou is still in the middle of his grueling training regimen for the upcoming NYC marathon.  It has been so hard, but he is dedicated to completing this race in an effort to raise funds for pediatric cancer research that saves lives.  Children are suffering every day, and Lou is determined to help the cause as much as he possibly can.  He is ranked among the TOP TEN fundraising individuals for Fred's Team out of over 700 runners.  I am so over-the-top proud of him.  I can't wait to see him at the finish line with Ty in my arms.  And, I can't wait to see him on NBC in upcoming weeks!  I am over the moon knowing that a whole new audience will be introduced to Ty's story as a result.  Thanks so much to all who have supported Lou's big run. 


2 comments:

  1. You really are Soupy Mom... Any normal person would have caved a long time ago! Still praying!

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  2. You, your husband, your family and Ty are such an inspiration. My heart breaks for you and yet rejoices in each victory. I, along with so many others continue to pray for you all.

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