Thursday, December 22, 2016

The Birth of Bodhi

photo credit: Catie McCabe

Bodhi Ty Campbell
October 18, 2016
8lbs, 9oz. 20 inches

Bodhi (pronounced BO-dee).  A Sanskrit name meaning “Awakened” or “Enlightenment.”  The Buddhist concept for Bodhi is spiritual awakening and freedom from the cycle of life.  Bodhi is also the name of the sacred tree under which Buddha sat and obtained his enlightenment/nirvana.   

We had trouble agreeing on a name for our baby boy for the longest time.  Then, after he was born, Bodhi just seemed to suit him perfectly.  Lou and I have been through our own spiritual enlightenment on so many levels, it just sounded right. 

Everyone wants this story to be beautiful.  A light at the end of the tunnel.  The rainbow after the storm.  Sadly, the birth of Bodhi was much heavier than it was happy.  It was more painful than I ever imagined.  And it has taken me 2 months to share this truth openly and honestly.

Physically, I was okay.  It is the emotional pain that has been so unbearable.  Now, eight weeks later, I can finally say I have recovered from the deep sadness that has weighed on me ever since this little soul was born.  I can finally see him for who he is, without searching for something more. 

Upon checking into the hospital early that morning, I was so lucky to walk into a very quiet maternity ward, greeted with friendly smiles, and escorted to my serene corner room where I would deliver the baby that my heart yearned for over the years.  The girl checking me in recognized my name, and we shared tears over Ty. Then my nurse came in and said she followed Ty’s story for years, and she would take the very best care of me.  I wasn’t even surprised that my angel would have arranged this for me.

“This is going to be perfect.” I thought, almost as if to convince myself, but I was already feeling like everything was all wrong.  It was wrong because this wasn’t supposed to be my life.  Nothing felt the same as it did when I was in labor with Ty and Gavin, and the flashbacks began rolling in.   With every contraction I couldn’t help but think “this is nothing compared to what Ty experienced.”  I re-lived seeing him in his hospital bed after so many painful surgeries, when he was suffering with MRSA meningitis, when he would tell me his head hurt, or his mouth “not work.” 

When Gavin was born labor was fast and intense. I was certain labor would be even faster the third time around so I didn’t hesitate to call for the epidural.  This time, however, labor was slow and steady.  Uncontrollable tears rolled down my face as my legs went numb because I couldn’t stop wondering… “Is this what it felt like for Ty when his arm suddenly slipped from around my neck that night?” In an instant, my four-year-old super hero lost his ability to walk and could barely move his arms or hold up his head.  How did that feel for him?  What was going through his mind when all of a sudden he was robbed of these most simple movements that most of us take for granted.  I couldn’t walk and my legs felt so unbearably heavy - but for me it was only temporary.  How unfair it was to think my son endured this feeling of helplessness for six months until he died. 

I tried to get comfortable in my hospital bed and wondered if Ty could feel me when I used to lay down beside him among the countless wires post-surgery.   Each time I winced in pain, I was ashamed of myself, knowing that the labor pains I was experiencing didn’t compare – not even close – to what my young son endured for 2 and-a-half years with such bravery.  These are the memories I try not to think of, but being in the hospital made it impossible to avoid.  Every procedure.  Every time his skull was opened.  Every infection.  His cries when the head pain would come and go with waves of intense pressure.  These are the thoughts that consumed my day.  I was unable to focus on the new life that was being brought into this world.  I could only think of the loss.   

Bodhi was born in the late afternoon, and I was immediately in awe of him.  I felt so light, it was almost as if it wasn’t really happening.  My first thought was that he looked so much like Gavin, but with more hair.  I looked for Ty in his face without finding much resemblance beyond a hint here and there.  Bodhi was placed on my chest and I could barely believe it.  A new soul.  A baby!  What a beautiful life I want for him. 

Over the course of the next few days, so many people came in and out of my room.  They had a lot of advice on caring for the baby, getting comfortable at the hospital,  and making sure everything the baby is exposed to is clean and sanitary (I had a kid with cancer, believe me, I get it).  None of them realized just how experienced I am with hospitals.  Nor could they imagine just how hard it was for me to be a patient there. 

Coming home I found myself even more weepy.  It’s so unfair that women go through all the pain of labor and what it does to your body, only to go home with such heightened hormones that can truly make you feel insane.  Why can’t they be happy hormones?  Couple that with the intense grief I was suffering and a newborn that cries constantly… that’s where I was at for the first six weeks.  I was an absolute wreck. We are just now finding our groove and falling in love. 

There, I said it.  We did not have a fairytale “birth story.”  Bodhi was a screamer, and it made me want to pull my hair out.  I felt fat, ugly, old, and incapable.  And it took a lot longer than I expected before I started feeling better.  I’m relieved to say that I am better now.  That this beautiful baby boy has blessed our home with new energy and excitement.  Gavin is the best big brother, too.  He’s so proud and so helpful.  I just love watching them together.

How I wish Ty was here, but I know he is watching over his brothers every second of every day.  There was a ladybug crawling on my window at the hospital – the first of many signs that he was there all along.  It’s not the same, and it will never be okay, but I am coping with this reality and I do know I am blessed. 

Be sweet, Bodhi.  This is only the beginning.  
Merry Everything to Everyone.  

Sunday, October 16, 2016

He is gone. He is here. Four years without Ty.

The ladybugs came today.  Our house is covered with hundreds of them.  How fitting that they came on this day… the day before the anniversary of his death.  When our house was so heavy with his absence, he sent them in undeniable abundance to say, “I am here.”

They say it’s therapeutic to tell the “death story” of your loved one.  I don’t disagree with this theory.  With the anniversary of Ty’s death tomorrow, I have been reliving his for weeks.  More and more vividly as the days get closer.  It makes me weep beyond control while it simultaneously reminds me how certain I am that I witnessed his spirit being lifted elsewhere with my own eyes, and I saw real peace wash over his.  I have no idea what Heaven is, but I do know with certainty that it is REAL.  I know this, because I saw my beautiful boy go there exactly four years ago.

Instead of retelling the story of his death this year, I want to tell you about how he has given the gift of life to one very special person.   I am grateful for a woman named Nadine, who was once a stranger and who is now a true friend.  Let me explain.

Some of you may know that several of my loved ones – like so many (too many) – have struggled with addiction.  In fact, Lou’s brother Jimmy died from his alcoholism just six weeks after Ty was born.  I remember our last conversation over the phone vividly and I am so grateful for that memory.  He was calling to congratulate us on Ty, and he ended the call saying “I love you.”  That was the last time I ever heard his voice.  Ty learned to say goodnight to Uncle Jimmy every night as he ended his prayers, and I have beautiful visions of Uncle Jimmy there to welcome him into heaven.  They are both free of pain and at peace.  

While I don’t understand from experience how a vice can have such control over a person, I do know and completely accept that addiction is as much of a disease as cancer.  And addiction can have a worse prognosis than some cancers.  That being said, every single day – albeit impossibly hard – an addict has a choice that my son didn’t have.  It was that truth that helped Nadine to embrace Ty’s story as inspiration for her own recovery.  

Nadine struggled with alcoholism for 30 years.  When she started following Ty’s story in 2012, she was in a terrible place.  She came to love him, and she began talking to him after he passed away.  She recognized the unfairness of the fact that he wanted so very much to live… yet, he had no choice but to pray for a miracle.  Whereas, on the other hand, she gave up on life completely despite the fact that she had a choice/the ability to try and turn it all around.  

I like to imagine that it was Uncle Jimmy who first found Nadine.  This wonderful woman who has so much love to give, yet who spiraled down his same path of destruction.  She loves children and was known as Aunt Nadine to dozens of little ones in her lifetime. Uncle Jimmy saw all of this and sent Ty to be the angel on her shoulder.  Ty has been with her every step of the way to sobriety, and he will never leave her side.  I mentioned that she mailed us her three-year sobriety coin on his 4th birthday, which is such an incredible milestone.  He saved her life, I know this in my bones.  

Ty had such purpose during his short time here on earth.  He touched so many lives.  I can’t help but cry when I get such reassurance that he also serves an even greater purpose in spirit.  He guides us as we work to fund research for children like him.  He finds others who need him, like Nadine, and he cares for them.  He is an incredible soul, and sometimes I can’t even believe that God allowed him to be mine.  

Pasted below is a triumphant post from Nadine, in her own words.  Her love and beauty spills right off the page.  It’s no wonder Ty loves being around her.  

"STAYING DRY FOR TY" BREAKING RECORDS.............Today I broke my own personal record.  This is the longest I have not had a drink since I was 19 years old, I am now 55. Oh Ty, how do I thank you??? How do I thank your beautiful mommy for putting her agony into the words that would help save my life???? Momma Cindy's blog came to me in the last stages of alcoholism, when you know you are headed to the end and you welcome it. My days were spent in fear, self-loathing, and hateful bitterness. Ty's story was perfect – another reason to read, cry, and convince myself that this life was crap. But there he was.... one of the most beautiful boys I had ever seen, fighting for his life, still smiling, in his extreme weakness, still loving. He was left with no choices, praying for a miracle was all that was left and it didn't come. I heard a voice in my head "YOU still have a choice," and I did so I made it. “Staying Dry for Ty” became my mantra. I hated myself… but I loved him in his videos, pictures, and stories, his story became my lifeline. A bond formed between me and the memory of this boy. I took it everywhere with me, even a few times to the liquor store where I would sit and stare at the door, but "my miracle" had come at a steep price and there is no way I could dishonor it. Now today, I am a vibrant, sunny, smiling and sometimes annoying healthy happy woman. It is not easy, it never will be, a 30 year addiction does not just go away......EVER. But those days I muddle through knowing it will pass, thinking of all Ty went through. Easy doesn't teach us anything and I want to Live, Learn, and Love and fully clearheadedly experience ALL life has to offer. Ty Louis Campbell I love you with all my heart and Mommy, Daddy, Gavin, and baby Campbell too. Thank you Ty. Until my sober soul meets your sweet cancer free one, you can bet your last blue lollipop I will be ''STAYING DRY FOR TY'' And for all those still fighting cancer and addiction, and those who have left us, we are still here, we love you, and we are fighting.

I am so honored on Ty’s behalf.  It comforts me to no end to know that he has done something amazing in the four years he’s been gone. Like Nadine said, “I will never know for sure until we meet, but I guarantee there is something very special about your boy and the proof is that I am here and writing you today!”

It’s almost impossible to imagine that four years have passed since I last looked into his eyes, kissed his lips, or ran my fingers through his hair.  I swear I can still feel his skin on my fingertips, and hear his whisper in my ear.  I think it’s because he never really left.  He is with me wherever I go.  Thank You for loving him and for giving us all such tremendous support over the years.  I am grateful for everyone that Ty has brought into my life.  It feels like I’ve lived 100 years without him, just as much as it feels like he left just yesterday.  

Soon we will have a new life in this family, and can’t even write about it because my emotions are so mixed up and confused.  All I know is that he is hand-picked by his brother from heaven, which is pretty incredible.  Stay tuned for more on that…. any day now…. 

Tuesday, October 4, 2016

Blue Lollipops for Your Birthday

To Ty, on your ninth birthday...

All day I’ve wondered what you would look like at 9 years old.  How your voice would sound.  All day I have had a weight on my chest greater than most.  I went through the motions like a zombie.    

I slept poorly last night.  Every time I woke up throughout the night, I knew it was your birthday and begged to dream of you.  Instead I’m not sure if I really slept or dreamt at all.  I heard Gavin’s giant footsteps early in the morning, and my first thought was how big he is, and how you would be even bigger if you were still here.  What size shoe would you wear, I wonder?

The day before, I received a package via priority mail.  It was a wrapped gift just for you – so I placed it next to your picture.  Gavin has been dying to open it, so it was the first thing he asked to do this morning.  It was one of the most special gifts we have ever received – a 3-year sobriety coin that Nadine says you helped her achieve after 30 years of addiction.  Thank you for giving her the strength to face those demons, you are a true guardian angel and you saved her life.  I couldn’t be more proud, and I will cherish your gift forever.

I often imagine two lives other than the one I’m living.  In the first life, you never got sick.  You are strong and athletic, tall and handsome.  You and Gavin are inseparable, and your little baby brother wouldn’t be nine years younger than you – because cancer wouldn’t have interrupted our lives.  In the second life, you survived your cancer, but not without the horrific side effects you suffered.  You’re in a wheelchair, I would still puree your meals for your belly tube, and I wonder if I could still carry you in my arms.  There would be no baby brother at all, because I would be too consumed with your care (and I wouldn’t trade that for the world.  There is nothing on earth I would rather do than take care of you). 

Did you see me crying this morning?  I hope it didn’t make you sad.  I need to feel sad like that sometimes – it helps me feel closer to you.  After your brother got on the bus, I rushed home and collapsed into the couch with loud, ugly tears.  I cried for an eternity until I felt like a balloon – every last bit of me swollen and stretched – somehow I fell asleep on the couch.  Grief is exhausting. 

I woke up soon after with a jolt, and knew I had to get out of our sad house right away.  Ironically, the weight of the day made it impossible to move any faster than a snail’s pace.  I showered forever, I made the bed, I moped and moaned as I picked up around the house.  On my way to the office Daddy called.  We decided to meet up for lunch, and that probably saved me for some of the day.  We love each other so much, and he is the only one I need when I’m missing you. 

I felt you with me every minute of this day yet I couldn't find an ounce of happiness no matter how hard I tried.  I bought blue rock candy after lunch, and later I decided to go to Hannafords (Heiny-Farts) to get your favorite things for dinner.  I heard your voice directing me the entire time, so I bought a pear (even though I haven’t eaten one in years), filet mignon, ditalini noodles, Locatelli cheese, bacon, and beer for daddy.  Daddy called Ria (the Bakeria in Pawling) and asked her to make a blue velvet cake for you, and the girls at the bank made sure it was properly decorated with blue lollipops.  How incredibly special it was. I couldn't even sing "Happy Birthday" through my tears, but Gavin and Daddy did a good job.  Gavin made a wish, and he told me he felt like you heard his wish and you helped him to blow out the candle.  

It was a foggy, heavy day, with countless teary-eyed outbursts of sadness throughout.  To tell you the truth, I need days like this, to just focus on you and all we’ve been through.  Every single day used to be like this… so I’m proud of how far I’ve come and how much I’ve learned to live with gratitude, despite it all.  I am so grateful for you, Ty.  For the chance I had to be your mommy.  For everything you taught me and continue to teach me. 

Baby boy, I hope your birthday today was filled with heavenly fun - running, jumping, flying and laughing.  I miss you so.  I will see you again. 

October 2008

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.