Author: Sheila Quirke

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Ann Folan 

It was 2001 and he was 15 months old. He was all big eyes and chubby cheeks and he had neuroblastoma, a particularly deadly form of childhood cancer.  Don’t Goggle it, we were told. It will only scare you. They told us about prognosis and staging and treatments and effects and how much time you will be spending in the hospital. And it is really a lot of information and you get a little numb.

And then the oncologist looks right at you and says “or you can do nothing, and take him home and he will die.”

He will die. He was 15 months old and without forever altering the course of his life, he will die. Your choice.

So you choose. And it shakes you the hell out of the la la land you have been living in, helps you strap on your kick-ass boots and get to work. Biopsy and port placement and chemotherapy and hair loss and nuclear scans and fevers and hospitalizations and tumor removal surgery. One sentence encompassing layers of hell I hope you never know.

And then you come out the other side and he lives. He lives and he is changed and you will forever wonder who he might have been. How much of who he is was forever altered by what happened to him? What you gave them permission to do. You signed that form saying it was OK, you let them poison him. It is crushing, the guilt. Not that he survived, for that you will be eternally thankful, but what you had to do to get him there. What you would have begged them to do. You chose. You find a way to live with that and you move on.

It is 2013. His little brother is 10 years old. A ginger-headed, freckled-faced boy full of life and energy. And they say it again. Only this time it is his brother and this time it is langerhans cell histiocytosis. Even more rare than his brother’s neuroblastoma and it is eating away at his bones, making holes straight through them. Again we make that choice, we cannot do nothing. But this time will be easier, we already did the hard stuff, we will be ok.

We were wrong.

It is so much harder the second time around. He is older, he needs to understand, we need to explain, he has friends that are devastated and we are so damn tired. And it is so much worse. Add steroids to the chemo this time and it is so not good. A blood clot in his brain, days in intensive care with pain and pressure so bad it swells his eyeballs in his head, spinal taps and a new chemo plan. It is so much worse the second time around.

And then you come out the other side and he lives. He lives and he is changed and you will forever wonder who he might have been. How much of who he is was forever altered by what happened to him? What you gave them permission to do. You signed that form saying it was OK, you let them poison him. It is crushing, the guilt. Not that he survived, for that you will be eternally thankful, but what you had to do to get him there. What you would have begged them to do. You chose, again. You find a way to live with that and it’s a little harder to move on.

The one comfort we had with everything we went through in 2001, was we had insulated our family and friends from ever facing the same. What are the chances of two kids in our intimate circle facing the same diagnosis? I had actually spoken that sentence out loud. At least we had that. And then it happened to us again. We were not saved by the odds, it struck us again. One family, two different kids, two different diagnoses. We struggle to move on, to keep going. But we are tired.

We are too tired to make the whole world understand that yes, some kids live after treatment. They live with a forever altered future of long term effects from learning issues to growth issues to fertility problems. They live because we made an impossible choice. And some parents make that same impossible choice and lose their children anyway.

We are too tired to explain that the treatments for kids are barbaric and ancient and funding is too little and the big guns and deep wallets don’t give any money to kids’ cancer research. They use little bald kids in their advertising to pull at your heartstrings and then give us less than 4% of their total budget. Less than 4% for ALL childhood cancers. Less than 4% to help kids like mine. To save parents like us from impossible choices.

I know you don’t want to think about it because it is hard and it is scary and maybe it will never happen to you, to your family, to your kids. What are the odds? What are the odds of two brothers, two different diagnoses, twelve years apart? What are the odds?

I am so tired, weary down deep in my soul. But I tell you our story because it is out there, it strikes without reason or predictability. Sometimes, it strikes twice.

And I have another son you know, three boys in all. A beautiful, amazing boy that has known very little of life without one of his younger brothers living in mortal danger. Never known a life without parents spending too much of their time at hospitals and clinics and doctors’ offices. And I live with the constant background fear, because I know it is out there and I know we are already so far outside the odds, I know enough to fear. Because, what are the odds?

Once upon a time I was able to live in la la land, until I had to make a choice and then make it again. A choice to act and forever change their life or to do nothing and let them die. I live in fear of the choice that isn’t a choice at all.

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Ann Folan is a native Chicagoan.  Her immigrant Irish parents settled on the northwest side and she never strayed very far from that epicenter. She and her husband John run their own business and focus on their three amazing boys.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Melinda Martin 

January 2nd, 2006 started out like any other normal day.  I was doing Karma’s hair and playing with her in the living room.  She got up to walk away from me and I noticed that her right leg was bigger than her left leg, right above her knee.  I asked her “Karma what did you do to your leg?”  She had no idea what I was talking about.  I grabbed her leg and started to examine it more carefully.  What I was looking at wasn’t discolored, it wasn’t a bug bite, and it wasn’t swollen.  It was hard as a rock and the whole thing moved when I grabbed it.

I called my dad and told him that Karma had ‘this thing’ on her leg and it was big and I was taking her to the hospital.  We got to the hospital and sat in the ER for what seemed like forever.  Finally, after five hours, they took Karma in and examined her leg.  The staff then told me that they couldn’t do any further testing without a doctors prescription.

The following day I managed to get in touch with her doctor and get the required papers.  We went through two MRI’s, four different doctors, and ended up in Gainesville by the 6th.  The doctor immediately scheduled a biopsy.  On Wednesday, January 11th, we received the worst news possible…  My baby had cancer.

It was a softball sized tumor in the back of her right thigh right, above the knee.  The tumor had metastasized into her lungs before she was diagnosed.  She was only five years old.   We had no idea what we were getting into.    Over the course of the next 26 months, Karma endured 23 months of chemo (only stopped for two months in 2007), five lung surgeries, including the total removal of her left lung, one leg surgery to remove the tumor, and the surgery to insert her port.

Never once did Karma complain about pain or the effects of the chemo.  She was such a strong person and had the faith to move mountains.  In July 2007 we were able to go with her to California for her Make-A-Wish trip.  We spent 6 days in San Diego enjoying the parks.  We went to Legoland, Sea World, The San Diego Zoo, and were able to watch a Padres game.  It was amazing!  There is nothing like seeing that joy in your child’s face.  She learned how to swim while out there in a roof top pool.

On March 1st, 2008,  Karma was the maid of honor at my wedding.   She was so beautiful and so excited for us.  A short sixteen days later, Karma passed away peacefully at home.  It’s so hard to believe that it’s been almost ten years since her diagnosis.  It is a day of my life that I will never forget.

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Melinda Martin is married and the mother of three girls, Karma, Jasmine, and Lily.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Angela Cruikshank 

My son, Oscar, is a two-time Wilm’s Tumour survivor.  He was just three years old when he was first diagnosed in April 2011 after complaining of a tummy ache.  He had asked his grandfather to rub his tummy and that’s when my Dad felt a lump on his right side.

An x-ray showed a mass in his abdomen and an ultrasound confirmed that he had a large tumour on his right kidney; further tests revealed that it was stage 4, the cancer had already spread to his lymph nodes and lungs.  Not what any parent expects from a ‘tummy ache.’

Having a child diagnosed with cancer is not something I would wish on my worst enemy.  It is torture to watch a child suffer and it is torture to feel intense fear on a daily basis.  I had already had a bad year prior to my son’s diagnosis:  my marriage had ended, I had lost my business and gone bankrupt, and one of my cats had died.  It’s safe to say that I was already in a rough state of mind.

I think most parents in this situation suffer from depression, anxiety, insomnia, and/or post traumatic stress disorder (PTSD).  We watch our kids fight for their lives every day for months, years in many cases.  We have had to hold them down for needles and other unpleasant procedures, we have held puke buckets for them, we have woken them up every two hours at night to pee during certain types of chemo, we have snuggled up to them in hospital beds to help them sleep.  Every day brings challenges, but every minute is precious because we don’t know if our children will survive.

My son’s first treatment involved surgery to remove the tumour and his kidney, fourteen sessions of radiation, and ten rounds of chemo which led him to remission. Great, right?  Yes and no.  Instead of feeling relief, joy, and happiness, from an emotional and mental standpoint, I felt worse than ever.  I was anxious, nervous, scared and it took one intense 5-7 second nightmare to realize that I needed help.

The nightmare was very simple, I was standing at the back door of my house looking outside and suddenly an invisible arm grabbed me and pulled me outside…it still gives me chills when I think about it.  That arm was cancer and I was terrified that it was going to pull us back into hell.  I could not stop crying and called a counsellor to make an appointment – best decision ever!  He helped me understand that what I was experiencing was normal under the circumstances, that it was a symptom of post-traumatic stress disorder and that most importantly, it did not have to last forever.

Sadly, my nightmare came true and Oscar’s cancer came back after only three months of remission.  It was pretty devastating.  Another eight months of more chemotherapy, surgery to remove the upper lobe of his right lung, and a stem-cell transplant.  Another eight months of watching my child struggle to live.

Part of the challenge of dealing with the mental health issues was that I felt incapable of feeling hopeful.  How could I trust that this ordeal would ever end?  I felt stupid even entertaining the thought that things would ever return to normal.  Hopelessness is a powerful state, it is an extension of fear and not very useful.  It’s important to note that my son never doubted he would beat cancer again, his positive attitude inspired all of us every single day.

Thankfully, he was right!

He went into remission again and we got another chance at normal life.  Yay us!  The big “however” was that my mental health challenges continued…I started getting vertigo-like attacks that would hit me if I was faced with any highly stressful (usually money-related) situations.  I’d get the head spins for hours, often crying and spinning until someone could come over to talk me through it, hug me lots and calm me down.  I firmly believe that one should only experience head spins as a result of too much drinking – waking up sober to a spinning room is cruel and unusual punishment!  All joking aside, I owe my friends and family for getting me through those difficult hours.

The person who comforts me the most, though, is Oscar.  Since his remission, anytime Oscar has complained to me of discomfort in his abdomen, for a few horrifying moments I have gone to that really scary place:  the place where my world falls apart, the place where my son has to fight cancer again.  I know he feels my stress and anxiety when I start asking him too many questions, “Does it hurt when you press on it?  How long have you felt this way?  Do you think I should take you to the doctor?”

On those occasions, he always says,  “Mom, don’t worry!  It’s not cancer!”  Out of the mouths of babes!

He has now been cancer-free for two and a half years and I am finally starting to feel hopeful again and beginning to believe that it is gone for good.  I will always be concerned about Oscar’s health and grateful that he will be monitored for cancer and other long term side effects for the rest of his life, but I no longer feel debilitating fear every day.  That is a beautiful thing.

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