Thursday, May 31, 2012

Where does the time go?

I was filling out paperwork for Ty and I realized he is four years/eight months old.  I can't believe it!  He is closer to five than I thought - so much!  Five just seems like such a big boy!  I remember Ty's neurosurgeon telling us a funny quote from his then four-year old son (who, undoubtedly, also believes five to be a very big number).  When I asked him how old he was, he said five without missing a beat.  His dad corrected him and told me he is four, but that he really can't wait to be five because it just seems so exciting.  He once told his son to settle down soon because he only has 15 minutes left before bedtime.  His son responded with a plea, "No!  Can I please have FIVE more minutes??  FIVE, pleeezee??"  How cute.

So, Ty will be five in a few months.  I don't know how I feel about it.  Cancer aside, grasping how fast my children are growing is actually depressing me a bit.  I'm so proud of them both, but I also feel so desperate because I want to hold onto this age and squeeze more joy out of it.  They are so cute, I can't let it go!!  :)

Sadly, I was talking to my sister about the daily oxygen therapy and what a strain it is on Ty and on all of us - but it's helping and that's what's most important.  When we started this, we expected 14-16 treatments (okay, so three weeks).  Then he was doing well and they said he should have at least a full course of 30 visits.  That was a lot more to swallow.  We began in April and now his 30th treatment will be tomorrow morning!  I would celebrate, but we have extended the care once again and his total treatment has bumped up to a full 60-day course of oxygen therapy.  That means we are only halfway done with this daily routine and we'll be going almost all summer.  It isn't easy, but it's working and that's all that matters.  Mentally, he doesn't understand why we are doing this to him, but physically he is improving in so many ways so how can we not move forward?  In fact, I imagine that someday hyperbaric oxygen therapy will be offered in conjunction with radiation treatment in an effort to prevent late term side effects of radiation like Ty is suffering from.  If only that was an option a year ago. 

So, when I talk to my sister during the ride home from oxygen and the corresponding therapy at Blythedale, we talk about the positives... it will be over soon.  That by then he'll be doing great (maybe).  I said to her, "Yeah, but you know what? I've been living my life wishing for every day to just be over with so that we can hurry up and find a healthier future.  Chemo is about a month long cycle each time, with lots of bad days that we just have to keep our heads up during and do whatever we can for Ty. Watching him have head pain and muscle pain.  Watching him getting really frustrated that he can't play with toys or sit up on the floor.  Missing his preschool.  Waking him up so early every morning to go somewhere he doesn't want to go.  Over 200 nights in the hospital last year.  It all just makes me want to fast forward through these tough times.  That's sad.  We are coming up to our two year anniversary since his diagnosis and there were so many moments on this journey that I will cherish always.  I am a changed and better person for it.  But at the same time, what kind of life do I lead wishing each day would end just a little faster.  What do I think is waiting for me in the future?  I know what I think.  A beautiful, healthy, happy boy who can stand on his own two feet and wear a tee shirt that reads "Cancer Fears Me".  I just wish we didn't have to lose so much time as a family to get there. 

You all know that I am dedicated to sharing Ty's story with anyone who will listen.  I was thrown into this "cancer world" kicking and screaming, but today it defines me.  Now and forever.  I will never, ever be the same and a day will not go by that I don't think about ways to support the fight against this disgusting disease.  I just need to find more time to try and execute some of the ideas I have in my head.  They are good, I know they are and I am going to make small progress until finally something big happens.  Something good in the world of childhood cancer, and all because of Ty.

Take this fundraiser that our friends are throwing for Ty this weekend.  It's absolutely amazing.  Just the thought of what one person could do with an idea.  I love it, Melissa, and couldn't be more excited about all you have done. 

The large majority of Ty's followers are women who feel so deeply for our situation.  Women are so powerful and so passionate.  Take breast cancer for awareness... Women get things done!  Damn!  I only hope that some day all the cancer moms out there can band together to create the same kind of awareness for all of the poor babies that are afflicted with all types of cancer.  The largest preventative right now is just that we are too overwhelmed caring for our sick children, or worse, overwhelmed with grief from a loss.  Getting up in the morning can be hard enough. 

Pediatric cancer is truely the cruelest and most unfair of all.  Yet, I walk the halls of this hospital and these kids never cease to amaze me.  A four year old girl pushing her poll around the toy room playfully while toxic chemotherapy pours into her veins.  A preteen girl who just lost her leg walking the halls on crutches and smiling at her accomplishment.  Another girl who lost her long beautiful hair at the tough age of 16 and still plans to go to prom.  They are superstars.  I want to help them.  I need more time, but I know it will happen. 


So, should I feel better about Ty if he makes it to nine?  No, I don't think I'll ever breathe easy.  But I will say this... if Ty makes it to nine it won't be because of high dose chemotherapy for the next five years - his body wouldn't be able to handle it.  There needs to be more options.  More alternative treatment options designed specifically for the rarities found in pediatric cancers.  Spreading awareness and generating funds to support medical research is the only way Ty will get to nine.  Prayer too, of course, but I can't sit around when there are new options on the horizon that need attention.  Cures waiting to be found.  I am supposed to do more with this, for Ty and for all of them.  I hope I can.  Spreading awareness through this website is my first step, but I have ideas for bigger, better things :)  Have faith in me, even if I don't sound like I have much faith in myself.  Today I'm tired, tomorrow inspired. 

Share Ty's story!  Run a 5K for kids cancer!  Make a donation to someone else who is!  Register at Be The Match bone marrow registry.  We can all make a difference.

6 comments:

  1. Cindy,

    I just want you to know that I received my donor card in the mail this past week to be a bone marrow donor. I did this because of Ty. A little boy whom I've never met but who I think about and pray for every day. He does make a difference and so do you. You have inspired so many people just like me. I wanted you to know that. Have a great weekend.

    Ann from Buffalo

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  2. Hi Cindy,
    I too have become a bone marrow donor last month because of you and Ty. Ty's story IS making a difference. KEEP GOING!
    -Caroline from New Jersey

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  3. Me and my finance have become bone marrow donors because of this blog and Ty. Xoxoxox
    -Jessica from OKC

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  4. I will now go to the site as well to become a bone marrow donor, and as the others because of this blog.

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  5. Because of Ty's story, I registered to be a match for bone marrow and I where a gold ribbon in September. In 5 days my 4 year old turns 5, I have already cried. But, even at 55, he will be my baby. Ty makes a difference and you inspire me. God bless.

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  6. You are amazing! You are reaching people on this website that are helping to make a difference, so, please don't think you are not doing anything. I pray for the day that Ty is healthy enough that all the time and attention you want to devote to pediatric cancer will be your reality.
    I pray you continue to feel His presence blessing you with peace, patience, comfort, and strength.

    God Bless,

    Janet
    COLE'S Prayer Team

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