Sunday, May 31, 2015

I hurt myself today... to see if I still feel...

When Johnny Cash sings those palpable words, so somber and sad, he describes my day on Friday quite perfectly.

 I didn’t know I was doing it.  I didn’t realize my trip into the city would turn into a haunting day of torture.  I thought I was strong enough.  I was even looking forward to it; longing for some time in the neighborhood that we used to call our home away from home.  There is a piece of me that still lives there, and I miss it. 

When Gavin turned six in April, his pediatrician discovered a heart murmur during his annual physical.  She assured me it was likely nothing to worry about and referred me to a local cardiologist.  After knowing what we know, Lou and I decided to take him to a specialist at NYP-Weill Cornell, instead.  My best friend’s niece, Savannah, was feeling tired and sluggish – she had a tumor growing around her heart.  Ty had trouble sleeping, he had a tumor growing at the base of his skull.  Maybe if the doctor’s discovered them sooner, our children would still be alive.  I don’t take any chances.

Walking from the parking lot to the hospital entrance, we passed Memorial Sloan Kettering.  (Just to explain, Ty was treated by the neuro-oncology team at MSK, that was our regular hospital, but his neurosurgeon was across the street at Weill Cornell, as was the Pediatric ICU.  At the time there wasn’t a PICU at MSK so we spent plenty of time across the street when Ty was critical). 

So passing by MSK, I had a strange, almost unstoppable urge to go inside.  I had my eyes peeled for a family on the street so I could say hello and connect with the parents.  It wanted to belong there again.  I hoped to see Ty's oncologist Kevin or our favorite nurse, Mary, just to feel for one second like they were still part of our lives, and for a split-second it almost felt like I DID still belong there.  

Then it hit me that I have no reason to walk through those doors.  That the family on the street wouldn’t want to “connect” with me; that they don’t even want to know I exist!  When Ty was fighting, I kept my distance from the bereaved parents.  I wasn’t strong enough to comfort them or to get close to them.  I needed to focus on treatment and survival and keep far away from the “other” moms.  Now I’m the mom they fear most.  The mom they turn away from.  And I don’t blame them ONE BIT. 

I never expected to suffer such intense flashbacks the second I caught the familiar scent of the bakery in the lobby at Weill Cornell.  I didn’t know that the cardiologist’s office was on the 6th floor in the Greenberg Pavilion; that I would make a left off the elevator instead of the right I was so accustomed to.  I didn’t realize I could still feel so green with envy when watching the families carrying blue or pink balloons up to the maternity floor to welcome a new baby.  I became flooded with memories from when I was the new mom.  Who could have ever imagined how my brand new baby boy would suffer in life. 

I grabbed Gavin’s hand and rushed passed the gift shop in fear that he would want to go inside.  I didn’t even look toward my favorite bakery, nor did I make eye contact with a single person on my way to our appointment.  Once we were inside the cardiologist’s office, I thought I was safe.  I had never been there before.  It was so new and nice, with so many fun activities in the waiting room for Gavin. 

I was safe until the testing began.  My eyes filled with unstoppable tears the minute I saw Gavin stick out his finger for a pulse-ox.  He had never seen one before and he thought it was funny.  He doesn’t know that Ty wore a pulse-ox on his finger or toe more times than I can count.  When the nurse peeled the leads and placed them all over Gavin’s chest, with one on each leg and one on each arm, I was in a complete state of internal panic.  Not because I was worried for Gavin – he was smiling the entire time – but because I was brought back to the PICU.  To countless emergency stays.  To laying in the bed next to Ty, trying to avoid pulling on all of the wires hanging from those leads.  If the nurse saw my tears, she didn’t say anything.  I am grateful for that.  I am grateful that Gavin didn’t notice, either.  He was relishing in the attention and having a bit of fun with the whole thing (leads on his nipples, leads on his nose, etc.). 

Everything checked out perfectly fine for Gavin.  The doctor paid extra attention to the echo-cardiogram and explained everything he was seeing to me.  He assured me that there is absolutely nothing to worry about. He was referred by Ty’s neurosurgeon and he knows what we’ve been through so he was very careful with me.  Very kind. 

But something haunts me from that appointment.  They had very modern machines, and they used the gel leads that are very easy and painless to peel from the skin.  Gavin was peeling them off and placing them all over the place and it didn’t hurt at all.  That’s good, I know.  But watching that brought me right back to the PICU when Ty was freaking out over replacing the leads that were all over his body.  His skin was so sensitive from chemo and they always stuck on so badly, like the worst bandaids imaginable.  Sometimes the remaining glue would be on his skin for days.  My mom, who performed hundreds of EKG’s as a medical assistant, once asked the nurses “Why don’t you use the gel leads, I don’t understand it??  These leads are so old fashion, they are hurting him!?!?”  The nurse always answered that they didn’t have those kinds of leads in the PICU.  

But they have them down the hall, don’t they?  I just learned that.  Newer equipment.  Nice, fancy rooms.  Right down the hall.  When the kids who suffer the most lay in an old, outdated, run-down PICU.
This is just one of 50+ flashbacks that came rushing in, fueling the quiet rage that is still burning inside me.  All weekend long it has been building.  As bad hospital memories consume me, I have to work twice as hard to bury the rage and keep a smile on my face for those around me.  It takes so much energy to keep it all hidden under the surface.  I was caught up in these thoughts when I found myself doing over 80 miles per hour uphill on Route 55.  I calmed myself down with deep breaths, and it felt as though my expanding lungs help to push the fire back down into the pit of my stomach where it hides. 

Of course I'm angry.  Someone ripped the skin off his cheek in the OR when removing tape.  Bruising from taking the dressing off around his port.  One time a nurse failed to notice the tape that was holding his needle in place and pulled with such carelessness that his skin split open under his arm (not even where the tape was). He was not sedated when that happened. Are gel leads too much to ask for?  It has just set me off in a tailspin.  

I was carrying Gavin for a couple of blocks on Friday because he was so hot and tired.  He rested his head on my shoulder and I guess he heard me sobbing.  I didn’t realize I was doing it.  He yelled at me.  “Ty is still with you!” he said. 
Then he asked, “Do you think there is ever tornadoes in Heaven?” 
“Of course not,” is said. 
“Yeah, me neither.  Only the best stuff is in Heaven.  Nothing scary ever.”

I wish I could find comfort in that idea, but today I miss my son and I feel angry.  Tomorrow I will try again.

Sunday, May 10, 2015

Mother's Day Tribute - The Locket Program

Seven children are lost to cancer each day in the US.  More than 2,500 moms over the past year alone will be grieving their loss on this day, because their child is not there to make a card, or gift a handful of flowers picked from the garden (or dandelions picked from the lawn).  It's a hard, hard day.  Almost impossible.

Thanks to our incredible supporters, we will be able to send out 200 more lockets to bereaved moms of childhood cancer.  It is the most heartbreaking thing we do at the TLC Foundation, we have shed countless tears as we print photos of these beautiful children and place them in the lockets.  Our hearts break over and over again, but at the same time it is the most meaningful project to work on.  We pour love into each and every locket, and we cry happy tears each time a mom reaches out to say thank you.  It means so very much to us that we can give this gift of remembrance, and it is your generosity that has made this program a reality.  

I have to give credit to my wonderful neighbor, Bianca, who inspired the project.  It was a simple gesture when she stopped by my house with a gift… a gift that has since evolved into something so much bigger. She gave me a locket. I had been desperately wanting a locket to put Ty's precious picture in. The locket was engraved with the poem “I Carry Your Heart with Me,” by E.E. Cummings. I wasn’t familiar with it at the time, but I sat in my room that night and read the poem over and over and over again until I fell asleep.

At the TLC Foundation we have since begun sending these lockets out to other moms across the country who have lost a child to cancer. We solicit anonymous donations to sponsor the gift, and apply all proceeds directly to fund childhood cancer research.

Of course, I know that a simple locket doesn’t change our painful reality, but to find a locket in your mailbox - with a photo of your child already inside - has proven to bring each recipient a feeling of comfort. It is just so important to know that our children are loved and remembered, and upon opening the package each mom feels less alone in her grief – even if just for a moment.

Thank you for thinking of all moms this Mother's Day. If you would like to participate in the Locket Program, visit  If you know someone who lost a child to cancer, you can nominate them to receive a locket by filling out this simple form here.