Thursday, September 1, 2016

When Your Child Has Cancer

Cancer.  We live in fear of this monster, and rightfully so.  It is the cause of death for one out of four people.  In fact, one out of two men, and one out of three women will be diagnosed with cancer in his or her lifetime.  What I didn’t know is that one out of 300 children under the age of 18 are diagnosed with cancer… that is, until it happened to my son, Ty, just before he turned 3 years old.

I thought, “Not my child, he is the picture of health.”  And he was.  Just look at that face.  Even days after this photo was taken, when I saw the image of a tumor undeniably present in the middle of his head, I was certain we could fix it.  He was way too perfect to have anything seriously wrong with him. This little boy was already climbing the high slide ladder by himself.  He ran alongside me on the boardwalk with energy I wish I could bottle.  He was a wild, fearless toddler so full of life… a brain tumor was simply an impossible thought.  I had no idea that childhood cancer, in fact, looks just like him.  It looks like any one of our children.  I wasn’t aware until I was the one out of 300. 

As parents, we become plagued with guilt and fear.
A childhood cancer diagnosis manifests as unimaginable guilt and haunting fear that completely consumes the parent.  I would smile on the surface to the point where everyone commended me on my strength – yet if anyone took a closer look they would see my cuticles were bleeding from nervous picking, my hair was thin, my skin ashy and my eyes so very tired. 

I was guilty because somehow I let this happen to my child.  I was guilty because I couldn’t take the pain for him.  As much as I begged and pleaded to “let it be me,” I remained helpless and had to hold him down deceitfully whispering “it’s okay” when none of it… not one bit… was, in fact, “okay.” 

And I was so very afraid every waking moment of every single day from the time he was diagnosed.  On his good days, I feared the beast that lurked in the corner – mocking me as I tried to enjoy the happy times.  When his bad days came, I feared his suffering, and I feared losing him more than words can possibly describe.

We need to know how this happened, but answers don’t exist.
“What did I do to cause this?” I constantly wonder.   It was my job to protect my child, and I failed.  But there is no known cause or prevention for most childhood cancers. It happens at random and it does not discriminate.

We know environmental factors cause cancer over time, like sun exposure, asbestos, alcohol and cigarette smoke, but when we look for answers pertaining to cancer in children, they simply don’t exist.  What could I have possibly exposed my son to that would cause him to develop an Atypical Teratoid Rhabdoid Tumor (AT/RT) at 2 years old?

Childhood cancer looks nothing like adult cancers….
If you never heard of an AT/RT before, I’m not surprised. Kids don’t get lung cancer and colon cancer, their diagnoses are so fragmented and complex, which greatly complicates treatment and the research landscape.  Most people have heard of Leukemia, but few have ever heard of rhabdomyosarcoma, ependymoma, neuroblastoma and diffuse intrinsic pontine glioma.   In fact, there are hundreds of different types of cancer diagnoses in children, and they are totally different than what occurs in adults.

… and they shouldn’t be treated the same, yet they are.
The very large majority of treatment protocols for children use highly toxic chemotherapy drugs that were invented 40+ years ago to treat adult cancers.  They are, essentially, hand-me-down agents.  For example, Ty was treated with Vincristine (discovered in 1961), Cyclophosphamide (1959), Cisplatin (1965), Temodar (1997), and Methotrexate (1956) among others.  I begged his doctors for something new to try!  I searched for clinical trials designed specifically for pediatrics where he met the criteria and came up with nothing.  I knew the reality of his prognosis and to this day I find it impossible to accept how little research is being done, and how few options we had. 

Children also have a much faster metabolism than adults so they often require the same medication in higher doses, resulting in even more extreme side-effects.  If you think treatment was hell for you or someone you love, imagine doubling those effects on a small child. 

Speaking of side effects
Two-thirds of all children who survive their cancer suffer from serious long-term side effects like severe heart disease and secondary cancers.  If you think about the majority of adults who receive these same treatments late in life, many won’t survive (for natural reasons) to experience the long-term side effects that a child treated at 5 years old might experience in his 40s. 

When I had to make treatment decisions, I was handed papers to sign that explained the side effects of the drugs my child would be receiving.  It stated a 30% chance of him developing leukemia later in life, and a high probability that he would suffer heart disease, as well.  At the time we were facing a highly malignant brain tumor growing at such a rapid pace he lost his ability to sip a straw overnight and his speech would become more compromised by the hour… Leukemia is most often treatable, right?  “We’ll cross that bridge when we come to it,” I thought, as I signed on the dotted line.  THESE are the decisions we make.  One day I’m reluctant to feed my beautiful boy a banana at the deli because it doesn’t appear to be organic, and the next day I’m signing off on treatments that are so toxic, I have to wear gloves when I change his diaper or clean up his vomit. 

The pressure to make the right decision on behalf of your child is unbearable.  The idea that you have to make treatment decisions, and there is no certainty if one is more effective than another for your child… what if you don’t pick the right one? 

The Research Conundrum 
The cure does not exist yet.  It is not being hidden by the government so drug companies can continue to profit from cancer care.  I know many researchers on a personal level, and to imply that they are “hiding the cure” from our children is simply hurtful.  I invest in them because I believe in them.  When you walk through the lab at MSKCC, Cornell, CHOP or Baylor, as I have, the passion for the work is palpable!  Be inspired!  But that’s not to say that childhood cancer research isn’t flawed.  Believe me, it remains very, very flawed.  Some of the challenges include:
  • The majority of agents in use today are not aimed at treating the unique pathology of children’s cancers. 
  • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. 
    • Therapeutic discoveries in the lab are not profitable for pharmaceutical companies to manufacture because the volume of drug delivery is comparatively minimal. 
  • At the same time, childhood cancer receives less than 4% of the national budget for research, creating a huge funding gap and leaving small, community non-profits like ours working relentlessly to supplement that funding and fill the gap. 
  • The clinical research landscape is complicated, resulting in progress at a snail’s pace. For example, the average time for a therapeutic discovery just to be tested in humans is 5 to 7 years.  For pediatrics, that wait time only increases. 
  • The possibility of discovering appropriate therapies can be limited by accepted research standards (e.g., large scale/multicenter requirements, testing single-treatments one at a time rather than jumping right into combinations that we know are more effective, placebo-controlled studies, and narrow eligibility criteria). 

The clock is ticking for our children and they cannot afford to wait.  I personally know several children who will succumb to their disease over time if new options aren’t presented.  THIS IS UNACCEPTABLE!

We need support and reassurance
A cancer diagnosis is bound to result in a barrage of unsolicited advice, often from complete strangers.  As a desperate parent who has educated myself way more than I thought possible, what I found myself needing the most was support and confidence in the decisions I made on behalf of my son. Seaweed in a bottle, Prayer vigils, Oils, the Burzinski clinic, Apricot Seeds from God.  If it couldn’t hurt, I tried it or spoke to many others who did.  In some types of cancers and in many cases, parents have bought time, minimized suffering, and even saved their child's life with these important alternatives.  But they are, by no means, a secret cure-all, which is so often implied.  Nothing is more hurtful than hearing “you should have tried this,” after receiving devastating news. We survive on hope and positivity!  

What cancer looks like…
For Ty, cancer looked like this… 

and this...

and this...

and this...

His journey was horrific, and I hear stories just like his day in and day out.  Childhood cancer does not equate to adorable children with no hair jumping rope and singing songs until they're all better.  While these children are incredibly brave and they amaze us with their ability to smile through it all, maintaining such innocence and beauty despite the odds… they also cry. A LOT.  Of course they do.  And they hurt, and they suffer, and they beg and plead for “no more.”

My son died in 2012 after 2 ½ years of treatment.  I am left to reflect on his pain and suffering every day forward.  I would do anything, ANYTHING, to take care of him again.  I was never so loved, or so needed.  My life never had such purpose.   Now I am left to redirect that love and energy toward raising awareness and accelerating the progress toward a cure in his memory. 

Go Gold in September
We need safer, more effective treatment options.  Cancer treatment for children needs to be gentler and more tolerable.  There is tremendous hope on the horizon for advances in targeted treatments and immunotherapy.   By raising awareness we can increase funding toward this groundbreaking research and ultimately find a cure. 

September is childhood cancer awareness month.  Our color is gold.  Please help us spread the word. 

Tuesday, June 14, 2016

When an itch is more than an itch.

Physically, I have been feeling great despite my rapid weight gain :)  Every day has been so busy I barely have time to think.  But whenever I get in the car to drive, I am alone with my grief and feeling so terribly sad lately.  Like an itch that can’t be scratched, it is always there, lingering underneath my skin no matter how happy I truly am on the surface. 

I think about how, although the idea of having another baby has infused a lot of happiness and anticipation into our lives, the truth remains that Ty’s absence is still so tremendously present.  I don’t know what I was expecting to happen, but nothing has changed, not even one bit.  I miss him.  This wasn’t supposed to be my life.  And I would give anything to have HIM back.  It is all I really want. 

Yesterday was an emotional afternoon.  I cried driving home from work.  I was wondering what my life would look like if he was still here.  Would he be in a big boy wheelchair with a joystick controller?  Would his speech still be so weak?  Or would we have triumphant days at physical therapy – making baby steps toward getting him back on his feet.  How would he be with Gavin and vice versa?  Would we still be welcoming a new baby into our home?  Then I think about what our life should look like.  Our life where cancer never showed it’s ugly face.  Where Ty is running strong on the soccer field and playing catch with his little brother outside.  It was all so incredibly heartbreaking to imagine.  

I hosted a Mess Fest meeting at the TLC office later last night.  We met with GiantKids, another nonprofit in the area, to discuss how we are working together to make it an incredible experience for the children in attendance who have battled/are battling cancer and other life-threatening illnesses.  I get so excited planning this event, because it is just so magical.  We were talking through the various activities planned and sharing exciting new ideas. 

Toward the end of the meeting I started scratching my inner wrist.  It was just a bit irritated and I was mindlessly rubbing it to sooth the itch.  I thought I might be feeling bumps, so I quietly hoped it wasn’t some type of rash forming and we ended the meeting shortly thereafter.  In the car I started scratching furiously, turned on the light and took a good look at my wrist.  I then realized that the itch was isolated to my “Thank You” tattoo.  In fact, the letters – the large T Y specifically – were slightly swollen and puffy so you could feel the outline of the letters if you rubbed your fingers against it. 

HOW CRAZY IS THAT?   I was in complete awe over it.  His name - right there in front of me.  I have never received a more obvious and miraculous sign from my boy than this.  It has NEVER happened before, my tattoo never bothered me for a second and I’ve had it for almost 3 years.  The slight swelling went away soon afterward.  It didn’t cause any discomfort… he just needed to get my attention and let me know that he is with me.   

You just have to believe there is something so much bigger than this life.  And whatever it is, it is pretty amazing.  

Thursday, June 2, 2016

Mourning the Baby Girl I'll Never Have

I was 31 years old when I got pregnant with my first.  What excitement ensued!  I remember checking the baby tracker almost daily to see what was new with the baby that day.  I cheated by reading what to expect in weeks ahead, and I bragged to my husband when he reached the size of a kumquat.  I was obsessed with knowing the gender, even though in my heart I was absolutely certain it was a girl.  I checked with the Chinese baby calendar online to determine the sex, and on my first try I landed on a blue square.

I immediately reassured myself.  First of all, this is a silly, meaningless, non-scientific calculator.  Second, I’m not 100% sure about the month I conceived.  It was during a New Year’s eve getaway so maybe it was December instead of January… Let me try that. 

Pink square.  Relief.

I grew up babysitting so I could make extra cash in my High School days.  In fact, I started when I was 11 years old.  Obviously things were different back then – I was still afraid of the dark but I would happily watch your kids on a Saturday night for $5 an hour, and parents trusted me - no questions asked. 

Both families I worked for on a regular basis happened to have two girls. We enjoyed braiding hair and watering the dandelions outside before playing My Little Pony at bedtime.  In my senior year, however, a new family moved around the corner who had two young boys.  Little did I know what I was in for when I was hired for that particular gig. 

Never in my career did I have to watch Teenage Mutant Ninja Turtles and peel wild boys from my body as they pounced on me over and over again.  I think if you saw my face during my first day at the job, you might have described it somewhere between shock, fear and a bit of disgust. Thankfully I was off to college shortly thereafter and never looked back. 

So when it finally came time for my sonogram, I was already bursting with joy over the expected words “it’s a girl” before they were even spoken.  When the sonogram technician instead pointed out the opposite, my heart sank just a bit.  Surely she’s mistaken?  I recovered quickly and realized how incredibly happy I was regardless, but I was totally surprised and caught off-guard nonetheless. 

We named him Ty and he was the love of my life from the moment he was born.  I remember watching him with pure wonder and awe.  “Boys are crazy!” I would say to myself with a smile.  Instead of watching TV, he was throwing his toys at the screen.  Instead of playing with his learning cube he was trying to smash it into pieces with his toy tools.  He zipped up the ladder and down the high slide at the playground before I could stop him, and he couldn’t even talk yet!

It was around that time I went in for the second baby sonogram.  THIS TIME, it was a girl for sure.  

Wrong again.

You know what?  How nice for Ty.  He will have a brother so close in age and they will be the best of friends.  In my heart I knew I would have more children so getting the boys out of the way first was probably a blessing.  Soon I would have a girl and it will be so sweet to know she has 2 big brothers to protect her.  Life will be perfect.

As most of you know, this is where my story takes a very sad turn.  Ty got cancer when he was 2 years and 10 months old.  His little brother, Gavin, was just 16 months old at the time.  For the next two years we focused on saving Ty’s life, missing out on so much of the childhood they both deserved, and in the end we lost him anyway.  He was gone just days after his fifth birthday, and I am broken.  I am half the person I used to be, the other half left with him on that crisp October afternoon. 

It took my husband and I a very long time before we could even talk about the idea of maybe having another baby.  Years went by.  I woke up one day and the woman looking back at me was suddenly old and turning gray!  My baby boy was in first grade and he was always so alone!  How did we get here, this is not my life. 

My husband and I agreed to try for another baby, but it didn’t happen.  I was so upset and angry.  I never had trouble getting pregnant in my earlier years, it seemed so unfair that I couldn’t get pregnant now – when the pressure of the clock was loudly ticking away in my ear.  We decided together that we wouldn’t try and medical procedures, if it was meant to be it was meant to be.  And by the time my 40th birthday rolled around, I believed it wasn’t. 

It wasn’t until I accepted this fact and started to actually fear the idea of going back to diapers and car seats that I did, in fact, get pregnant.  I am still in shock.

I decided that we should name her Faith as a testament to all we’ve been through.  I began filling shopping carts with tutus, tiaras and delicate floral crib sheets.  I spent weeks thumbing through pink or lavender nursery ideas.  The idea of watching my husband with a little girl in pigtails made my heart skip a beat.  I intentionally started visiting Zulily again on a regular basis, and went straight to the pages on little girls. 

Once again, my heart was set on a baby girl.  Once again I am emptying those shopping carts one by one, and feeling oh-so uninspired by cargo shorts and navy blue everything.  It took me a few days to mourn the fact that a girl just isn’t meant to be.  I am in love with my baby boy already, and I wouldn’t trade him in for a million tiaras, but I can’t promise I won’t be tempted to play with his hair when he sleeps.  My talent is being wasted – not everyone can French braid like I can! 

Having a baby boy is so fun, don’t get me wrong, and I dream about how much I love to put a newborn into a soft, fresh one-piece with blue trim.  To pick him up and nuzzle his hair under my nose.  It’s my favorite thing.  But a baby boy also comes with a ton of mixed of emotions that I need to cope with.  Would Ty feel we are trying to replace him?  What if he looks like Ty, will it break my heart?  What if he doesn’t look at all like him, will I be disappointed?  What if my mind starts thinking crazy thoughts in hopes that Ty can be reborn in this baby.  I used to say things like that in my darkest days, begging Lou to have another baby, and it terrified him.

I am okay.  I am happy.  I am in a good place and I can’t wait to have another baby.   

Wednesday, April 27, 2016

Spring Cleaning with New Meaning

I spent the weekend cleaning out the closets with Lou.  And the toy chests.  Every time it gets a bit easier as I find less and less of Ty’s things. It’s natural for a home to transition from baby toys, to big kid toys, to teenager “stuff.”  But when the traces of a life lost slowly disappear from existence, it is painful on a level that I can’t put into words. 

This year, I am giving away a silly toy where you blow into a pipe and try to balance a little foam ball as it floats above.  Aunt Debi bought it for Ty while he was in the hospital.  It was great for his therapy, but he never quite recovered the strength to get the ball in the air.  It was time to let it go.  I was consumed with guilt as I watched my hand open and the object drop into a garbage bag.  It feels as if I’m throwing away another memory, but at the same time I know I can’t keep everything (unless we're talking about a decomposing cake - that I can keep forever). 

This year, Spring Cleaning had new meaning.  Lou and I are expecting a new baby in October, so we had to consider keeping some of the items that would have otherwise been disposed of.  It was so strange to imagine we should hold onto those car seats, and the toy kitchen.  Surreal, really.  I know, many of you are probably shocked reading this.  I never really talked about having another baby… I think because I never truly believed it would happen for us, and it made me feel vulnerable.   

Cancer didn’t just rob Ty of his childhood (and his adulthood, and everything in between).  It robbed our entire family of what we were supposed to be.  I wanted to have at least one more baby after Gavin.  A girl (of course) and the three of them would grow up being the best of friends.  When Ty was sick I often cried to Lou about how cancer was threatening us with Ty’s life, and also stealing our opportunity to add a new life to our family.  We needed to be 100% there for our son, and a baby was an impossible thought. 

After we lost him, my thoughts about getting pregnant were so terribly inconsistent.  On one hand, I shuddered at the thought – as if a new baby would be a futile effort to replace the irreplaceable.  On the other hand – I was in a panic because so much time had passed, I was so much older than I wanted to be if I was going to get pregnant, and my ovaries were shouting “tick-tock” when I tried to sleep at night.  I worried that if something happened to me and Lou, Gavin would be alone in life. 

A couple of years ago, Lou and I agreed that maybe a baby would be a good idea.  Maybe it would bring some light and happiness back into our home.  We tried to get pregnant, but it didn’t happen.  I was shocked and angry because I never had any trouble getting pregnant before.  Why?  Why when I’m already in so much pain do I have to suffer another monthly reminder of how terribly wrong my life turned out. 

I spoke to a doctor about the trouble we were having and he had lots of suggestions.  None of which felt right.  Lou and I decided that after all we’ve been through, we didn’t want to take any measures to make it happen.  If it was meant to be, it was meant to be.  And when I turned 40 in October, I truly started to accept that it wasn’t.  In January my best friend treated me to a girl’s weekend in Puerto Rico where I shared my acceptance of this fact, and she insisted – poolside with a cocktail in hand – that I would get pregnant.  That I was being ridiculous for talking like that and together we laughed and decided that if I did have a baby it would be a little girl (obviously) and I would name her Faith.

Turns out, when you give up on getting pregnant, accept your life as it is, and start planning for a different future, that’s when life likes to get interesting again. I got pregnant soon after that trip and I am going to have a baby in October.  Just when I got truly comfortable with the fact that Gavin can take his own showers, wipe his own butt (sometimes), fold clothes (sort-of) and clean his room.

Sorry we didn’t tell anyone sooner.  But I’m 40, and the statistics on things going wrong at this “advanced maternal age” are frightening.  After all we’ve been through, I needed to get the results from multiple screening tests and blood work before I was convinced everything is going to be okay.  The benefit of all this advance screening for old ladies like me is that we also get to find out the sex of the baby early-on and guess what?.... it’s a boy.  I’ll share my thoughts on that in a few days because I need time to spill the mix of emotions I have over that fact. 

This morning I caught the early train.  I stopped by the bakery just as they were opening for a coffee and a warm, sticky, fruit and cheese Danish.  I got settled on the last car, opened the bag, and just as I was getting it on with that delicious morsel, I felt him move. 

It’s real.  This finally feels like it’s really happening!  And I guess he loves a warm danish as much as I do! 

Just like that, I traded in my vision of pigtails and sundresses for my new morning date at the bakery.  He will hold my hand and point his little chubby fingers to his favorite cookies behind the glass, and I will buy him anything and everything he wants :)