Friday, February 8, 2013

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!

42 comments:

  1. It's so awesome and heart breaking (at the same time) that you were able to spend time with Maya. You both have inspired me unlike anyone before...and I think the two of you (and other parents too) are changing how people see childhood cancer...the awareness will bring the money and the new, novel ideas that won't be so harsh on these kids. I honestly admire both you and Maya for choosing to change the world instead of staying in bed...I think I'd still be in bed.
    Both your boys were so amazing and so beautiful...I see them in my own sons and cry hoping they are healthy always...but you never do know and I thank you for the work you are doing so that our medicine is further along than it was...
    Super Ty and Rockstar Ronan are the best!

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  2. Hi Cindy & Lou,

    Just thinking of you guys alot lately. You are both unbelievable parents to be doing what you are doing with the Foundation etc. I am sure Ty would be so proud of you : )
    Your an inspiration, as is your son Ty.
    I am actively seeking out what I can do to help kids in Australia suffering from peadiatric cancer because of you guys. Ty's message is spreading - I will keep letting people know about Ty's foundation & the blog to raise as much awareness as I can.
    Peace out little Super Ty - Your a champion.
    Cindy - you are one incredibly strong woman - I hope my daughter turnes out to be at least half the woman you are : )
    Lou - I haven't ever met you but mate I cannot even fathom the pain you & Cindy must be feeling. Your son was a champion & you are an amazing Dad.
    I will keep my eyes peeled for signs of Ty down under.
    Dad from Oz!

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  3. I told my sister about Maya's petition to light the White House gold and she said the idea to light it blue for Autism was turned down. I hope the President does the right thing this time.
    Happy to hear you sound so positive and energized. Don't know how you do it! You amaze us.
    Always thinking of Super Ty!!
    -Jennifer

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  4. Cindy, I don't know how to ever put into words the depth of gratitude I feel for what you are doing each and every day. I have followed Ty's story faithfully, and my heart still weeps so much. My son is 3. He looks so much like Ty. I thank you from the center of my being for what you do to help other children - to try to keep them from what your own son had to experience. Because it COULD be my child next. And I will be forever grateful for any preservation of one more single minute with him. You are absolutely amazing beyond words.
    Chris, NY

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  5. Cindy & Lou ~ Your energy astounds me. I know you have days where you can hardly move forward, but you find Ty inspiring you to continue to make progress just as you did as you fought to find treatments for him. You are right, I wish I would have known to fight before you had little one...but regrets get us no where right? I will continiue, in whatever small ways, to raise funds and awareness. You two are an amazing voice for those who fight. There are times in my day when I am amazed at how your ability to relay information and the feelings families who have children with cancer with the rest of us. It takes people who can relay that to others to inspire and you both are gifted. No wonder Ty and Gavin turned out absolutely captivating!

    Keep moving forward...I am convinced this is helping you to heal. Ty is everywhere and in so many hearts! Thank you for sharing him and for allowing so many of us to help in even the smallest ways. You are a blessing to us all.

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  6. Ty and Cindy- the dynamic duo! You two are my heroes. God bless you and keep you - and give you strength, hope, and peace.

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  7. Ty Campbell for president for sure !!!!
    Our president oboma better go gold at the
    White house in Sept. I hope everyone speaks out for this please .

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  8. Your new websites are amazing...Great Job!!! I am also very happy at your progress in the city. Ty is in my thoughts everyday....

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  9. let me just start by saying that yestarday night i couldnt relax for a minute. not visiting Ty at night i felt like i am betraying him. I was glad to see the blog back on today. THANK YOU. i have so much to say but i seem to never find the right words. Ty is with you. Ty is everywhere. I miss seeing his smiley face but i know that my pain doesnt compare to yours ever. you know cindy, when i reread your blog of september 13 it still didnt seem real to me. i was angry. i was angry at the world, i was angry at the doctor for discharging Ty home to die. a mom instinct hit inside of me. i thought to myself i would be kicking and screaming and calling them loosers, because they didnt save Ty and was letting go home "empty handed". i was angry. i still am. the thought that Ty is not physically here destroys me every time i allow my mind to grasp the concept. until the last moment i didnt believe and i still dont. then i ask myself " would i want to have to know a child who wold die of cancer or would i prefer to never meet this child" and sadly i dont have the answer for that. i dont know if i would be as strong as you are saying i would have rather had him and loose him or to never have met him. but again, i never really met Ty, and that changes everything. this is the thing i regret the most in my life, not meeting Ty.
    your union with maya thompson sounds so powerful. oh, how i would have loved to witness it. two powerful grieving moms united because they lost their most precious gifts in life, their boys. cancer will be defeated. sadly i will admit that i dont know if i will ever be happy to hear the cure is found because in my mind the boy who deserved it the most isnt here to benefit from it. sadly his toothbrush will remain standing "untouched" for eternity. i am sorry to make you sad cindy. you dont deserve that especially while you always try to stay positive. love you always and forever. i miss you superTy.

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  10. Cindy,
    I am amazed everytime I read your blog.You are an amazing person and I am so happy with how much you have accomlished and are still accomplishing in Ty's memory. I am sure he is as proud of you as you are of him!You inspire me on a daily basis and I thank you again for sharing Ty's life with all of us.I am sure big changes wil come because of you efforts and your great love for Ty. You and Lou are a shining example of what true love can do for all of us.The love you feel for your children and for each other is seen in all you do.God bless you and the entire Campbell family.Keep up the wonderful work .Love ya, Jean <3

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  11. I didn't know that there were requests by others to turn the White House purple or blue and they were turned down - WHY did they agree to Pink???? It's a pity when it comes down to $$ or who had a better lobby. It's a travesty - and if they aren't willing to support all of these causes, they NEVER should have agreed to go Pink. I imagine that's why they keep turning down causes because the White House will end up being a rainbow every day of the year - but you know what, SO WHAT??? Just goes to show you how many important causes need support and awareness. If the White House turns down this appeal it doesn't mean we stop pushing for it - it took YEARS before they turned the White House Pink and it's taken YEARS for our stores to be turned pink from wall to wall in October. As much as we need Pediatric Cancer Awareness and Funding NOW, we have to remember these things take time and although these kids don't have time to waste - we have to remember that we just keep fighting, every no we hear has to just galvanize and make us stronger to KEEP fighting for what's right and someday, SOMEDAY, Goldtember will be a reality.
    I love to hear the exciting news about the doors opening on transparency for treatments Cindy - it's happening because all the amazing parents of these incredible kids are finding their voices in social media and educating people and raising awareness one person at a time that the tide is turning, people are starting to get that a change needs to happen and you, WE are the ones to make it happen. I love love love that Lily Tomlin quote and it's been my mantra for months now - Someone DOES need to do something about that, and I AM SOMEONE. And you are, and you are, and hey you over there - YOU ARE TOO!!
    Last nite I was at a networking event - a group I meet with quarterly made up of old co-workers, friends and peers within my industry. I had my Gold Ribbon on & SuperTy button - and lots of people asked me about it and I got to share a little bit about Ty with at lest 6 people. 6 people that got to look at his beautiful little face and think for a moment about the toll that Pediatric Cancer takes and maybe next time they have a chance to do something for the cause, donate money, wear a ribbon, sign a petition - maybe they'll make more of an effort to join in because they'll think about doing it for Ty.
    Standing beside you in this fight - SuperTy always and forever!

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    Replies
    1. Couldn't agree with you more. Thank you!

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    2. I'm normally a lurker, but came to comment. I was going to comment essentially the same thing, but 365daysofchristopher did it wonderfully and a lot more eloquently then I ever could. My reaction and feeling completely mirror yours :) Lots of love and support!

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    3. I totally agree!!! Couldn't have said it better!! VERY VERY UPSET that there's a possibility of GOLD being turned down in September!! Who CARES IF THE WHITE HOUSE TURNS INTO A RAINBOW!!! WE ARE THE WORLD!! HE IS OUR PRESIDENT VOTED IN FOR THE PEOPLE BY THE PEOPLE!!! Uuuggghhhhh!! DO THE RIGHT THING OBAMA!!


      Gabrielle

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    4. Well said! We must keep on fighting, keep bringing awareness to this horrible situation. Keep at the administration to change those bulbs!

      Do we know the time frame they have to respond to the petition? And will their desicion be posted at the same site?

      Thank you Cindy, for sharing your beautiful, sweet Ty with us all. As always keeping the Campbell family in my thoughts and looking for those ladybugs! Much love from Myrtle Beach. <3

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    5. Well said! We must keep on fighting, keep bringing awareness to this horrible situation. Keep at the administration to change those bulbs!

      Do we know the time frame they have to respond to the petition? And will their desicion be posted at the same site?

      Thank you Cindy, for sharing your beautiful, sweet Ty with us all. As always keeping the Campbell family in my thoughts and looking for those ladybugs! Much love from Myrtle Beach. <3

      Delete
  12. I feel so incredibly fortunate that I came across your blog and that I am getting to witness what you are doing as you go. If I heard about your progress through a news report after things were further along, this wouldn't mean nearly as much to me. But because I get to read your blog, see your daily progress, even feel your love for Ty, it impacts me so incredibly deeply. I am a better mom because of you. I prioritize my life better (in my eyes) because of you. I appreciate even littler things more because of you. So thank you, Cindy. Thank you for doing what you are doing, for using your experiences to make improvements for everyone, for helping out all those who may get cancer tomorrow. Just thank you thank you thank you. I will always wish it didn't have to be this way, that you could have just kept your healthy absolutely knock-out gorgeous baby boy. I will always wish you didn't have to know this pain or travel this path. I will also forever be grateful that you haven't just laid down, though, that you are fighting as big a fight as ever. And I will always do what I can to provide support in the background to keep that fight up. Even if it's just a little comment - please know, they come from my heart and while these may just be a few words on a page, you, Lou and Gavin are constantly in my thoughts and prayers.
    Love,
    Lori

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  13. I am so glad the blog is back up...I was so lost and worried last nite when I couldn't log onto it...I had a feeling that it was being updated due to the new website and all but boy was I anxious!! Just goes to show how much you and Ty have become part of our lives! I am so excited for whats ahead...you and Maya are making a difference!! Its so good to hear the excitement in your words! Keep moving forward Ty is with you every step of the way!!!!

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  14. I am so glad the blog is back up...I was so lost and worried last nite when I couldn't log onto it...I had a feeling that it was being updated due to the new website and all but boy was I anxious!! Just goes to show how much you and Ty have become part of our lives! I am so excited for whats ahead...you and Maya are making a difference!! Its so good to hear the excitement in your words! Keep moving forward Ty is with you every step of the way!!!!

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  15. Thank you for continuing to inspire me and so many others. It's amazing how reading this blog helps me to put so many things into perspective. Here's to ladybugs and falling leaves!!

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  16. Hello,

    Thank you for continuing to share " SuperTy's " courageous & heartbreaking journey.

    I am thrilled that the Ty Louis Foundation & the Foundation's website is up & running. Please continue with all of your great work in increasing the awareness of childhood cancer & for advocating for increased funding for pediatric cancer research. Finding a cure for pediatric cancer(s) must always remain a top priority.

    " SuperTy " will always be my hero.

    All the best.

    - Rob Swan

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  17. I think the new website (and I found it at the usual superty.org) is PHENOMENAL!!!!!! What a rock star, bad-ass (sorry!) little boy you have there..... Ty was just amazing. And he will be forever.
    Loved this very informative post. Please keep me in mind if you need any support for Muddy Puddle projects in Monmouth County, NJ. I am "just a mom" now, but in a former life was a pediatric nurse practitioner, and have a very special place in my heart and soul for pediatric cancer. Who wouldn't?
    So glad you had an awesome day in NYC. Keep the faith, as my wise and wonderful Pop-Pop said always....

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  18. Cindy,
    My sis introduced me to your blog several months ago. I've been keeping close tabs on your journey and even nominated you for the unstoppable mom award. Unfortunately, cancer still sucks. I am a teacher and our little community was grieving last week when one of our 3rd graders lost his battle with leukemia. His name was Evan and in his final weeks, I hope that he felt tons of love from our community. One of our 5th graders who has a great talent for art, came up with the idea to hold a fundraiser for Evan's family. Together, we raised over $4,000. Our fundraiser was called Art for Evan and we even made the local news and newspaper. Evan's memorial service was just this past Sunday. We will miss his stories and creativity. On Monday, I posted a Stand up against cancer sign in my classroom and put 'Evan' and 'SuperTy' on it. Thank you for sharing your journey. If you want to see Evan's story, you can see it on Facebook at Hope Floats, Evan's Journey. Keep fighting!

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  19. I really hope the president will jump straight to a gold Whitehouse! EXTREMELY disappointed to hear about the"no" to the gold...how hard can it be...?

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  20. Ty is alive in every single word you write, Cindy. Thank you for sharing Ty and reminding us all how precious love is.
    Much love & hugs,
    Judy

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  21. Cindy,
    You and Maya continue to amaze me with your strength. I'm sorry more wasn't done before Ty and Ronan, it's wrong and I'll never understand it!! I can promise you that myself along with many others have heard your cries!! I haven't lost any of my kids to cancer, but I refuse to turn my back on all the kids fighting cancer!! Lack of awareness and funding is unacceptable and we WILL help you guys change this!! I believe in the both of you and your foundations!! I will continue to support and fight with you!!

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  22. Cindy! I (of course) nominated you for Self magazine's "Women Doing Good" contest. I have another one for you-
    In O magazine (March 2013), Oprah is doing a project called: "De-clutter for a Cause" (page 125). The winning proposal will be featured in O magazine. What's a better cause than Ty's cause?
    Here is the website incase you are interested:

    oprah.com/declutterforacause

    Thinking of you and Ty every day,
    :) Marcela Dzeda
    Reston, VA

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  23. Loving the new website guys. ;) Just wanted to drop a line to say that I nominated you for both events but I could not get the 2nd one to take "women doing good" as it kept saying that the city state zip was incorrect?? If you or anyone knows what I may be doing wrong please note it here and I will comes back often to check and try to re-enter. :))

    Much love to the Campbell Family
    ~Michelle Hughes, North Ga.

    ReplyDelete
    Replies
    1. I also meat to say, that I signed the petition to The White House aswell.

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  24. The TLC website looks GREAT!! Ordered a T-shirt yesterday. Praying that the White House will go Gold this September.

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  25. My family and I drove down from Albany Wednesday, we had an appointment at Mount Sinai too. For a very different reason though. As we left, I glanced at the park, basked in the sun and thought of Ty....something was just in the air I guess!
    Without getting political, I truly hope the president lights the tree gold, and why not purple! You are doing amazing work for the Tys of the world, I wish you the best! God bless

    ReplyDelete
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