Everywhere I go you go, my dear

Whenever we crossed the Triboro bridge into Manhattan, Ty always used to say we were in the city where Spiderman lives. Well, yesterday I had a great day in Spiderman’s city.   I participated in some great meetings where I talked a lot about my Ty (something I love to do).  I had Ty’s locket on; the one that Gavin loves and the one that reads “I carry your heart in my heart.”  Needless to say, I felt him with me everywhere I went.  All day long. 

It was such a beautiful day, cold but clear and sunny, so after a meeting at Mt. Sinai hospital I took a walk around the reservoir in Central Park.  When I lived on the Upper East Side I ran that loop often.  I was reminded of how simple and fun my life was back then, but also how I would never want to go back in a million years.  I would rather have had Ty and have to live without him now, then having never had him at all.  I would rather carry his heart “in my heart” instead of holding his hand as long as he existed and I was lucky enough to be his mom.

Living in the city was great.  Life was fun.  But I realize now the tremendous, life-altering thing that was always missing.  LOVE!  The inexplicable love explosion that happened the second Ty was born.   I am so lucky that you were mine, Ty.  I think about that every day.  Our house is covered in your pictures and I just look at them in awe over you.  I love you beyond words. 

I don’t get rid of the strangest things just so that I don’t have to feel like Ty is gone.  I can’t escape it, but I certainly try.  If you came into my house, you would never know he died.  His toothbrush is in the holder, his bed is ready and waiting for him, his room is decorated awesome.  I don’t ever want to change any of that.  I think that toothbrush will sit there for an eternity!  However, every once in a while I do have a moment of missing Ty combined with a moment of strength that puts me into cleaning mode.  The other day, it was tackling the kitchen pantry.  Just one shelf (it’s a wreck – baby steps), but on that shelf was a half-case of his Boost meal substitute shakes.  I donated the unopened cases, but these I held onto just because.  They were expired.  I had to do it at some point, so I just did it.  I emptied them one by one into the sink and I was immediately overwhelmed by the distinct smell that I love to hate.  Those shakes were his only real nutrition for years.  It spilled on our pillowcases and couches.  I washed syringes all day long.  I could smell it through the tube in his belly at any time of day and when my poor baby threw up, that was what I smelled, too.  The memories came flooding.  Good and bad, I welcomed them all.  It is amazing how a simple scent can bring you back like that.

I think I’ve mentioned before that I have some of my grandmother’s very old furniture in my house.  There is an armoire, in particular, that still smells like granny’s house when I open the drawers.  She didn’t live in that house for the last 25 years, but the furniture still carries the smell and when I miss her I can always open a drawer and find myself right back in her bedroom, snuggling up with her on her bed and watching a black-and-white TV (that’s right, I am that old). 

Oh Ty, Ty, Ty.  How much I miss him.  How much he inspires me to just keep on keeping on.  I don’t think there is a person in existence that could love another person more than I love him, but I do know there are a lot of others who love with the same intensity and I am drawn to them. 

During my busy day I met with so many wonderful people who are in this fight with us.  One lost her husband, another his friend, another his brother, and then another Momma who lost her baby and shares the same love as Ty and me – Ronan’s mom!  I finally reconnected with Maya in person and she was kind, warm and oh so beautiful.  I was happy just to give her a hug and talk about how much cancer sucks over a cup of coffee.  To sit with another person who understands how much I love Ty, who knows the pain in my heart, and who has the same passion to fight burning ablaze in hers.   Someday she is totally going to build a world-renowned neuroblastoma treatment facility and I think that is just amazing. 

“Doesn’t it just suck that more people weren’t doing what we’re doing before our sons got sick?”  I’m paraphrasing from Maya, but yes, my thoughts exactly.  We both believe that our beautiful boys might still be with us if there was more advancement in childhood cancer research at the time our boys got sick (both in August 2010), more transparency between the researchers and the medical institutions and more transparency between the doctors and the patients, so that families like ours might have had more options.   What are they doing with brain tumor vaccines over in Belgium?  Germany is making amazing inroads in antibody therapy – how come we didn’t know this?  Is it risky?  Uncertain?  Unproven?  We’ll take it, just let us try.  It’s better than the alternative, which was that they died. 

Why weren’t we informed about flash-frozen tumor tissue being used for research?  That fresh tumor tissue can be taken straight up to a lab in the same hospital for genomic sequencing?  All of this is very new science and procedure that wasn’t available at surgery time for Ty, but if we had the foresight maybe we could have made it happen.  I am happy to say that it is becoming more and more of a standard practice over the past year or so… but there is so much more to be done in that area.  A more streamlined system for tissue sample and data sharing needs to become mandatory across all institutions.  A dialog needs to take place between doctors and parents pre-surgery (including the most difficult dialog about port-mortem tissue donations).  If it’s too difficult to present to parents face-to-face, put it in a pamphlet!  Just inform us!  I don’t know how, but I won’t stop asking for it until it becomes a reality. 

My meetings in the city have shown me that we truly are at the cusp of some amazing things in pediatric cancer research and treatment.  That a new standard of care is on the horizon.  That people are thinking more and more about the kids, how to invest in the most promising research, how to enrich the patient’s lives while they are in treatment, and how to help the families and siblings of the littlest victims.  These groups of childhood cancer advocates are driving a long overdue and fundamental change in the way pediatric cancer treatment and research is approached.  After every powerful person I meet, I become more and more energized and inspired.  My Ty is everywhere, I can feel him behind every word that comes out of my mouth, and I know that what we are doing is good and important.  Yessss!  No job I ever had made me feel like I was doing something good and important, except for the best job in the world which is simply being a mom to Ty and Gavin.  As hard as it is to be so involved when I have so much pain bottling up inside, I couldn’t imagine doing anything else with my life.  Ever. 

And, what about Maya’s petition to light the White House gold in September?  Is it possible that Barack Obama might say no?  Maya seemed unsure about what the outcome will be.  I didn’t know that he turned down a similar request to turn it purple for the March of Dimes, but that does make me nervous.  I’m sorry, Mr. President, but I’ll never understand or forgive you if you say no.  I can’t imagine why you said no to purple, either.  Just change the lightbulbs, what harm is there in that?  You are the President of the United States.  Pretty influential.  You signed the proclamation for childhood cancer awareness – now it’s time to back it up and I know you will! 

This is Ty's sign for "Peace Out"

Ty, you are my superhero.  I truly believe that you might have been president yourself someday.  Who wouldn’t vote for Ty Campbell? 

IMPORTANT NOTE BEFORE I GO:  You may have had difficulty finding the blog.  I had to deactivate the URL "Superty.org" for a short time until we can have a new landing page uploaded.  Hopefully by tomorrow (if the blizzard doesn't delay progress) superty.org will be a landing page with easy access to the blog, the foundation and the muddy puddles project.  The new urls for each with then be www.thetlcfoundation.org, www.supertyblog.org and www.muddypuddleproject.com  Soon!  I promise!  Sorry about the confusion.  Please let others know that they can find the blog at the old link www.tylouis.blogspot.com for the time being.  Thank you!