Thursday, October 4, 2018

Turning Eleven in Heaven

I stare at my boys.  Usually when they are sleeping, or if I can get a longer glimpse of them during a quiet moment in my head, and I think about what kind of lives they will have. 

I want them to be kids as long as possible.  To have fun and ask to “play” with their friends.  I was eleven years old when I looked twice at my dolls and questioned if I was too old to play with them anymore.  I remember crying over the idea that maybe I was.  I wonder if Ty would already be asking to "hang out" with his friends, instead of "play."

I want to protect them from the insecurities of high school.  I want them to stand up to the bullies, and they sure as hell better not bully others.  I loved high school and I loved my friends.  I was always happy.  With all I read today about depression and anxiety, it’s sad to think that all I want for them is to get through it unscathed and ready for the next phase in life. 

I want to stop them from acting with reckless abandon in college (or at least, help them to find the right balance between experience and learning).  And I hope they don’t drink the punch with grain alcohol.  They WILL be embarrassed the next day.  I hope they find their love for music and see as many concerts as they can, while they can.  From bands in the bar to sold out stadiums - and I hope they find their way to the front row.  I hope they respect women, and know to NEVER make inappropriate advances.  There is no excuse for that what-so-ever and I have zero tolerance. 

I want all the right career choices to fall into place in their twenties so they can live on their own in the big city and I want them to travel while they are young and free. 

I want to watch them fall in love, marry the sweetest girls, and kick off their thirties with a cute little house filled with love and laughter.  The thirties will bring marriage and fighting, complete chaos when babies are born, and they will start to see all of those “You’ll see” moments that everyone warned them about.  I hope they can take it all in stride and remember to focus on the tremendous love, because this will be the first decade in their lives where they are no longer putting themselves first.  I hope they know how wonderful and fulfilling and beautiful that is, despite the hardships that go along with loving others so deeply.    

For Lou and I, life got particularly hard in our thirties and forties, and I wish I could protect them from the really sad things that start happening mid-life.  People we love most have died, loving relationships have dissolved, addiction and cancer have consumed far too many friends and family, and financial hardships have been debilitating.  Life gets real right about now, and I worry for them.  

Despite the rough patches, life is great.  The world is beautiful.  Love is all around us.  And, I can't wait to watch my boys grow up.  I wish beyond wishing that I could have that opportunity with Ty.  I'm up early today, and as I walked down the hall I thought about how I could be sneaking around decorating with balloons for when he wakes up.  I imagine he would roll his eyes because... eleven... but deep down he would really love that.  I would start cooking the bacon and getting the waffles on for his special bday breakfast before he went off to middle school (!), served with a blue lollipop on the side.  I'd give him extra lunch money and a treat for desert.  Everyone would come over later for cake and a song.

But he is forever five years old.  If you asked me what I would want for any of my sons in their first five years of life, I would say laughter and pure joy in that most innocent time.  But he suffered, and that was so unfair, so I hope with all hope that there is a heaven and he is celebrating a terrific birthday “up there” whatever that looks like:
  • I hope he feels safe.  The idea that I wasn’t able to hold his hand and be with him will haunt me forever.  I worry that he felt scared and alone, and I hope that’s not true.
  • I hope he never feels sadness, even when he knows we are feeling sad because of losing him.
  • I hope he could hear what we said to him over and over again as he left this world, and that he carries those words with him… I love you, I love you, I love you… because love is everything.
  • I hope heaven is spectacular.
  • I hope he continues to keep Nadine strong, and gets to play with her dogs like they are his own because he never had a pet.
  • I hope he really is watching down on his brothers, and that he can guide them through their own ups and downs in life.
  • I hope nature is his playground.  That he is painting the sky, and guiding the ladybugs to visit me, and jumping in muddy puddles every chance he gets.
  • I hope when I feel a special breeze, it is his embrace.
  • I hope the inaudible whispers in my ears are really his.
  • I hope he has so many little friends.  I hope he found Sally and made her feel safe, just as I hope McKenna found him and made him feel safe.
  • I hope he isn’t lonely, even though I feel a pang of jealousy for any spirit that gets to be close to him other than me – as if I’m losing ground.  So silly, I know.
  • I hope he has Granny there with him, to hold his face and give him super long soft kisses on his cheeks. 
  • I hope he has access to an endless sea of blue lollipops and gumdrop trees.
  • I hope he spends all day laughing – like every day is his birthday.
  • I hope the air up there is filled with music and smells like butterscotch.
  • I hope he feels me when I’m thinking of him. 
  • I hope heaven is that beautiful abyss where the sky meets the ocean, where just looking out at sea brings a feeling of serenity.
  • I hope he can’t remember the pain.
  • I hope there are balloons in heaven.  And toys…. Lots and lots of toys.  And whoopie cushions.
  • I hope time is irrelevant, and all these years on earth without him will feel like no time passed at all when we meet again.

We lost my cousin Johnny in December, and my Aunt asked me, “Isn’t it weird to believe in heaven?  For example, what happens when a spouse dies, a person gets remarried, and then they are all awkwardly reunited in heaven?”  I laughed.  I said to her, "You are visualizing heaven in the context of being human.  We can’t understand beyond what we know life to be… but I like to think that heaven is pure love and something like a sixth sense that we can’t possibly understand until we experience it. Humans are way too simple-minded to have any idea what heaven really means.”  I like that concept, but what do I know.  I am very much looking forward to that day of enlightenment for me, but until then I hope I can live out this life with love as my guide. 

I miss you Ty.  My eleven year old boy!  You would be so tall!  I wonder what your smile would look like.  I never did get to see your big boy teeth come in.  That boggles my mind all the time – that I don’t know what your smile would look like.  I can otherwise imagine what you would look like at eleven from head to toe, but I get completely stumped at your smile.  I hope some-day you’ll visit me in my dreams and give me a big, eleven-year old smile so I can carry that with me.  I am the luckiest person in the world because you were mine.  XOXOXOXOXOX infinity J

Friday, September 21, 2018

Yellow for Sally

I used to play Candyland a lot. My son Ty was diagnosed with a brain tumor when he was 2 and having spent more than 250 nights in a hospital with a toddler (who loved candy, especially blue lollipops), you can imagine it was among his favorite games to pass the time. His favorite color was blue, my other son's favorite color(s) at the time were red and green (yes, both), so I always had to be the "yellow guy." 

I since decided that my favorite color is yellow. It's not a popular choice among kids, and I get questioned about it often.

What's your favorite color?
Yellow? Really? Why?
Because it's a happy color...

The irony lies within the fact that for me, as a bereaved mom, every ounce of happiness I feel is forever bittersweet, juxtaposed by my loss.

Yellow is a happy color. The color of sunshine. In a time when I most needed hope and happiness, yellow could not have been a more perfect color to designate as my favorite. The Coldplay song, Yellow, became our love song.

I met Matt and Nicole just months after Ty died. Their daughter - Sweet Sally Sunshine - had been recently diagnosed with infant leukemia. I drank waaayy too much wine that night, and shared my "fuck the world" sadness with them quite inappropriately (probably to their horror), but I would never know. They were and are the kindest, warmest, most optimistic people imaginable. Nicole has the most beautiful smile you'll ever see.  From the moment I met them, I admired them tremendously.

Over the course of the year (~2013), after several ups and downs, Sally was thankfully cancer-free. Matt and Nicole could have eventually put the ugly and unbearable world of childhood cancer behind them, but instead they chose to advocate for the children. They were the largest force behind the movement to convince the Empire State Building to go gold to raise awareness for childhood cancer, and when the Empire State Building refused, they gave a provoking speech in Times Square as its lights went gold in September to prove that even greater things can come out of such disappointment. 

Sally and her family brought our community together in a united mission to raise awareness.

Sadly, cancer wouldn't let them go on with their lives, even if they wanted to. Sally suffered tremendous setbacks over the years, and on Wednesday she died suddenly after becoming septic from an unknown infection. She had just celebrated her sixth birthday.  

Cancer will not be listed as her cause of death. She is considered a cancer survivor. Statistically, when measuring the impact of childhood cancer, she will be deemed a success story. But the world lost this beautiful girl because of childhood cancer. Because the treatment she endured at such a young age weakened her little, growing body. The growing list of long-term side effects from the treatments that temporarily saved her life included seizures, low oxygen and a weak immune system. Like my own son who suffered necrosis and the onset of paralysis despite the fact that he was cancer free, Sally's quality of life was compromised.

Sally's story is the reason why we fight so hard to provide funding for safer, more effective treatment options for children. Why I'll never stop fundraising and fighting and talking about kids with cancer.

Over the years, Sally's sunshine remained bright, no matter what she was faced with. When you were in her presence, you could literally feel her light. Sally made people happy.  She was yellow.

Sally's family has asked that we wear yellow today to honor their amazing girl. It may be my favorite color, but that doesn't mean it works with my complexion so I didn't have much to choose from. I think this is a happy shirt, and I am smiling with tears in my eyes as I take this photo to show Sally's family how loved she is.

With every ray of light, Sweet Sally Sunshine will be remembered.

Saturday, September 1, 2018

Childhood Cancer Awareness. What Difference Does it Make?

I’ll be the first to admit that after all of this time, I’ve learned awareness is limited when it comes to impact – but still so very important. 

This is my ninth September since my eyes have been opened.  Nine Septembers since the first day I walked into the playroom at Memorial Sloan Kettering Cancer Center and saw a poster that was emblazoned with gold ribbons and sticky notes.  I was introverted (still am), overwhelmed, and walking around in shock over the fact that I was really there because my perfect almost-3-year-old son had cancer.  I didn’t want to be there and my energy made it obvious that I wasn’t welcoming others to talk to me. No one approached me, so I didn’t ask about it, but I quietly read through the adorable handwritten notes on the gold ribbon poster with curiosity. 

That night I googled it, and I learned that gold ribbons represent childhood cancer awareness.  I started to feel a passion emerge from within that told me it was important and imperative that I do everything I can to make gold as well-known/linked to kids’ cancer as pink is to breast cancer. 

I started searching on Facebook, and mind-you, even Facebook was fairly new.  I had only joined the social media network when Ty was born to show off his photos, and Instagram didn’t even exist yet.  I found a handful of new groups just starting to emerge that were pushing the “Go Gold” movement.  Blogs were just starting to scream about the injustice of it all.  Why is everything “pinkwashed” but no one knows about gold?? 

If it’s true what they say, that awareness = funding = cures, then I was sure as hell going to do my part in raising awareness.  And so were the incredible friends who loved Ty so much, some of whom later became board members of the Ty Louis Campbell Foundation.  Countless letters were written, awareness facts were posted, and fact sheets were compiled (with some fairly questionable accuracy, but we did the best we could). 

Fast forward to September 2018 and I am kicking off this childhood cancer awareness month with the following message: “You should all be very proud.”  Eight years after I started blogging, and almost six years after losing Ty, I can promise you that so much has changed, and every single person reading this is part of the butterfly effect that has driven that change. 

If you put the words “gold ribbon” in a Facebook search, you will find hundreds of pages dedicated to childhood cancer awareness compared to what I found eight years ago.  If you google it, you will find dozens of options to buy gold ribbon merchandise and childhood cancer awareness tees.  A childhood cancer community has been formed, and it is fierce.  There is now an annual “CureFest” in Washington DC, and a Coalition Against Childhood Cancer (CAC2) with more than 200 membership organizations.  Advances in social media have connected us all in a way I never could have imagined years ago, and I promise you, there is a slow but steady impact being made as a result.  Here are a few things I want to share off the top of my head:

  •  In 2010, there was only one drug created specifically to treat childhood cancer in more than fifty years.  Now, eight years later, there are four.  Is that good enough? Hell no! But, it’s a tremendous step in the right direction.   
  • In 2017 the global goliath – Amazon – became the largest company to support the Go Gold movement, and in 2018 it is even bigger and better (see below photo).
  • Major League Baseball is going gold for the third consecutive year by dedicating today "Childhood Cancer Awareness Day" at ballparks.
  • In 2011 I was in a desperate search for a clinical trial that would accept my son.  He had a rare brain tumor (AT/RT) and we were clinging onto hope for a new option.  There were none – not one AT/RT trial – posted to  Today, when you search his disease type, there are seven trials open for enrollment in which he may have been a candidate. 
  • I have seen companies from Hyundai to Northwestern Mutual support childhood cancer research, and the list of corporate support continues to grow.
  • I have visited research labs that are specific to childhood cancer research (and now work for one at Weill Cornell Medicine) that didn’t even exist nine years ago. 
  • Genomic sequencing and individualized treatment went from an extremely expensive option that only Steve Jobs could afford, to a growing frontline protocol, even in pediatrics. 

Do I think we can we attribute this to driving awareness?  Absolutely.  But I would be remiss if I didn’t say that it took/is going to take much more than increased awareness if we are going to see a difference in the overall outcomes for these children.

The clinical trials and research labs that have emerged are because of the dedicated researchers who took action.  The corporate supporters are a result of a handful of influential people who leveraged their position and took action.  The funding that has provided seed money to see big research ideas to fruition are a result of fed-up families and nonprofits who are fundraising and taking action.  The regulatory changes, such as the Childhood Cancer STAR Act, are because of the collective effort of the childhood cancer community who took action.

So I’m following the lead of my friends at the Children’s Brain Tumor Project, and I’m declaring September Childhood Cancer Action Month.  Yes, of course, please continue to raise awareness… but let’s all think about how we can turn that awareness into action. 

Through the Ty Louis Campbell Foundation, we have taken action by supporting breakthrough research that we believe in.  This September, I’m asking you to “Take a Stand” against childhood cancer by taking action.  Host a fundraiser to benefit TLC or any childhood cancer organization close to your heart.  

You can also find helpful ideas via the links below, and I hope you will continue on this journey with us. 

Childhood Cancer Awareness Action Month
Sept 1-30: Go Gold for Childhood Cancer Awareness Month

Or make a donation, here:

Heaps of gratitude coming your way.  From my heart to yours. 

PS - It's been such a long time since I've posted a blog, it's only necessary that I also share some fairly new photos of Bodhi Ty Campbell.  My love.  He has breathed new life into this family... and complete chaos.  

All of my love and gratitude to each and every one of you who continue to care and support our family.  We would be lost without you.