Thursday, August 31, 2017

September is Exhausting

I wrote my first blog about childhood cancer awareness month in 2011. My son was diagnosed with brain cancer in August of 2010, but it wasn’t until after I saw them taking down some of the “awareness” signs from the playroom at Memorial Sloan Kettering that I learned about September. I didn’t know that gold ribbons were for childhood cancer. I didn’t know that September was “our” awareness month, and I was thrilled and humbled when President Obama signed a proclamation making it official in 2012.

I always thought gold was such a perfect color to represent youth, but the dual meaning of “nothing gold can stay” from the Robert Frost poem haunted me immediately. The beauty and newness of “gold” is usurped by unstoppable aging, and there is an underling message of natural progression and eventual death that was my worst nightmare. I understood that “nothing gold can stay” but wondered about just how numbered our days/his days might be.

So, September 2012 was the first “official” childhood cancer awareness month. It was also the month we took my son home on hospice care. In September 2012 I saw my son live out the rest of his days on my couch in the family room, adorned with more comfy blankies and surrounded by more toys than a child could dream of. But his real dream would never be realized. His dream of jumping in muddy puddles, his dream of being cured, his dream of feeling “bedda.” Instead, with every passing day he felt worse. With every passing day, hour, minute, I lived knowing that it was one less day, hour, minute I would have with him. He was dying. He was four years old, and I was holding onto hope that maybe he would get through September to turn five on October 4th.

I made the very unreasonable decision that I was going to throw him a carnival party. I bought so much crap from Oriental trading company and had a vision of blocking off my entire street to have kids flood it like a block party - complete with men on stilts and elaborate inflatables. There was a movie called “My Life” where actor Michael Keating was dying of cancer, and his wife (Nicole Kidman) throws him a similar birthday party in his backyard. It’s such an emotional scene from the movie, and I couldn’t help but reflect on it as I planned for Ty’s carnival. The whole time, I guess I knew it was never gonna happen. I just didn’t want to believe it. Instead we buried him with a stack of carnival tickets in his hands, given to us by our friend Rachel.

I planned to write something very different. Something more about the awareness and the ACTION that we need to take against childhood cancer. But I started typing and my mind went elsewhere. The truth is… there are thousands of blogs, social media posts and essays written by parents like me who want to raise awareness for childhood cancer – and they all sound exactly like the posts that I’ve written in 2011, and 2013, and 2014, and 2015 and 2016 and so on. It’s exhausting! If you want to read my favorite one about childhood cancer, please visit my post from last year. It was most informative.

And if you want to DO SOMETHING, read about our TLC September initiative where all fundraising efforts in September will ensure that 100% of donated dollars support the TLC for Families program and are paid out to families in Houston who are displaced by Hurricane Harvey and who also have a child in treatment.

So, I guess my “awareness” post today is just to make everyone “aware” that it still hurts. That it will never ever be okay. That grief doesn’t go away and time doesn’t heal. Insert great quote here about waves and scars and blah blah blah. I’ve read and agree with them all.

I will never recover from losing my son. The intensity of my grief is forever commensurate with my boundless love for him. I hope that the intensity of my anger, on the other hand, will subside when the research teams, regulators, biotechs and pharmaceuticals stop dragging their feet and make new treatments available to more children FASTER. My son died because there wasn’t an effective treatment available to cure him, and I know with complete confidence that there could have been. All of this incredible science…. these amazing discoveries.. the truly brilliant minds that take my breath away… but where is the progress? If all of it was taking place twice as fast, with twice as many people focused on it instead of parents selling lemonade and riding bikes across the country to raise money for research, maybe it would have happened fast enough to save my son. (Important note: if you believe the cure exists and the government is hiding it from us, or if you think cannabis alone, Jesus, seaweed in a bottle or herbs could have saved him - you don’t understand the kind of cancer we were dealing with, the genomics, the rate of progression, etc. and I beg you to keep your thoughts to yourself).

I can’t wait until all of these “Fuck Cancer” cries are heard with the implementation of real, curative treatment protocols that truly fuck cancer up in every direction. I can’t wait until September rolls around and I don’t have to contemplate writing a blog about “knowing the facts” and “taking action against childhood cancer.” Like I said, I am exhausted. I talk about cancer all day every day, I fall in love with more and more kids on a daily basis, and I continue to hear bad news every week. I want to be bored in September. I want to focus on foliage and falling leaves and geek out on the apple picking and corn mazes around the corner. I want to shop for impractical fall jackets that are worn once per season, not gold ribbons and gold shoelaces and t-shirts adorned with my son's face on it to get the message across.

I am sitting in the doctor’s office as I write this blog, and the song “You’ll be in my heart,” is playing. That was Mely's song for Ty and I can’t stop the tears from flowing like a river. Everyone is so politely pretending not to notice, but it’s so obvious. Mely got married over the weekend. She sent me this photo of her bouquet - with the locket we gave her just before she left us in 2013. Forever our family. She kissed Ty’s face a thousand times after he died and we cremated him with her tears soaked into his skin. She is the most giving, loving person I know, and I hope she has an incredible life filled with love and happiness. My Mely deserves nothing but the best. Ty will be watching over her for an eternity.

Thank you for still caring and reading and sharing Ty’s story. Even when my writing is so filled with sadness, I am grateful for your listening ears and kind hearts.

Saturday, August 12, 2017

The Emotional Hangover

For the fifth year in a row, thousands of people gathered to pay tribute to all kids who have been impacted by a childhood cancer diagnosis and to celebrate childhood in their honor at the Mess Fest.  The event was outstanding.  We had more people than ever (which is hard to imagine knowing that 2,000+ people have come year-over-year), we added lots of fun new activities, Peppa Pig was everywhere, the media coverage was what dreams are made of, and there were so many VIP families that touched my heart and made it that much more special.  The day before the Mess Fest, I felt Ty’s presence and it was SO STRONG that I was immediately at ease.  I can’t explain it, but somehow he communicated to me that it was going to be amazing, and I was 100% confident in that notion, enabling me to thoroughly enjoy that magical day.

An event of this magnitude takes months upon months of planning, and an army of dedicated Board members and volunteers who work so incredibly hard to pull it off.  My gratitude for them brings tears to my eyes.  

The most amazing part of the day was seeing the VIP kids who we honor at various activities, and knowing how far they’ve come!  This is what it’s all about!!!  Right here.  The Mess Fest is for Dylan, and Brynlee, and Chloe and 100+ more honored children represented by these signs.

But for all of the incredible triumphs, and the families of children who are thriving against cancer, there are families like us, whose children are on the "forever" signs.   It was McKenna’s birthday and I thought of her often throughout the day.  For as light and fun and happy I was, I felt equally heavy each time I took a moment to remember the children I know and love on the forever signs.  McKenna's beauty stops me in my tracks, and David is just the coolest kid I never got to meet.  I could go on and on.  Whenever we go through the signs at the TLC Foundation, I am always so touched how everyone treats their photos as if it was one of our own, and we often stroke our hands across their faces as we read their names aloud.  

After such a tremendous high from a successful event that required so much planning, I’ve suffered a severe “emotional hangover” all week.  And I can’t stop myself from getting totally hung up on all of the anniversaries coming up.  Like today, for example. 

Exactly seven years ago I called the pediatrician in the middle of the night to request a call-back.  The on-call physician and I spoke calmly about how poor Ty was whining all night, and couldn’t tell us what was wrong.  Yes, it’s happened before.  We were scheduled for a sleep study in a couple of weeks to test for night terrors or physical discomforts, but I couldn’t wait any longer.  This seemed like more than tired whining.  It seemed like he was in pain.

We agreed it would be best to take him to the hospital.  Someone came over to watch Gavin at sunrise (my mom, most likely) and we drove to Cohen’s children’s hospital.  He was wearing black shorts, reef sandals, and a yellow “NYC Triathlon” t-shirt because Lou had recently completed the race.  I came across that t-shirt recently and chuckled because Bodhi could easily fit into it… Ty was 2 years and 10 months old with a head full of golden curls at the time (Bodhi is not yet 10 months). 

Ty was happy when we arrived at the hospital.  With the exception of tired eyes, he was so sweet and thought the waiting room was very exciting.  The blood pressure machine was a hoot!  The scale… loads of fun!   The adjustable bed?  Forget about it.  The finger prick… not so much.  The nurses adored him.  No one showed even an ounce of concern that he was a child who was sick, because there was none.  He was jumping, laughing, they were as baffled as we were and seemed confused about why we were there.

I appreciate that the pediatrician, however, agreed that his sleeping behavior was odd enough to call for a scan.  She was kind, she was sure it was nothing, but ordered the MRI just to be sure and to help us get to the bottom of it.  I was grateful for her validation.

And from that day forward, August 11, 2010, my baby boy suffered.  And that’s just the cold hard truth.  The suffering began with the very first blood draws/IV lines and it never ended for the rest of his life.  Just like that.  Literally, overnight.  Life as we all knew it was forever changed.

I try to be positive and I often claim that I am a better person because of what we’ve been through, and I do believe that to be true.  I lived in a bubble before cancer – the same one I see a lot of moms living in.  It’s a fine, often happy, neurotic little bubble, but a bubble nonetheless where silly little things have a big impact and criticisms run high – of oneself and of others. 

Starting August 11, 2010, mine popped.  My eyes were opened and I can’t unsee the things… I can’t unfeel the feels.  I experienced a love so deep, and a fire in my heart so fierce, I became a lioness – followed by a loss so grave that I can never feel unbridled happiness ever again (until the day my spirit binds with his again). 

Today I like to think that I am more loving, empathetic, compassionate, and grateful for my blessings.  I live with clarity and perspective.  I try to remember and be grateful for the time I had with him at all.  How lucky was I?  He was mine!!!  That still amazes me. 

It all sounds so positive and admirable, I know, but most of the time I call bullshit on myself.  Because I know that I would still be all of those things, a better person, blah, blah, blah, if he survived.  But I would also be happier because I would have him by my side.   I want the stupid bubble back.  Seven years and I don’t even know who I am when I look in the mirror. 

'It's so much darker when a light goes out than it would have been if it had never shone.' - John Steinbeck