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 Kathryn Bryson

“Never give up, this may be your moment for a miracle.”

This has become our motto the last four years with my son Bryson. He has been up against some of the hardest battles, but has been blessed with even bigger miracles.

Jan 28, 2009, a day I will remember forever, just like it was yesterday. This is the day we were thrown into a world we knew nothing about, one that would change us in every way for the rest of our lives. The world of childhood cancer, something we knew little about, but that we would quickly learn.

• 46 children are diagnosed with cancer each school day
• 7 children die each day
• it is the leading cause of death by disease in children and adolescents
• 80% of children diagnosed with cancer already have advanced disease, spread to other areas of the body at the time of diagnosis
• childhood cancers are biologically different then those of adult cancers
• 2/3 of survivors later experience significant or chronic medical problems or develop secondary cancer later in life from the treatment they received for their original cancer

This is a world that you never get to leave, but after the initial shock and grief lessens, you find the fuel to fight like hell to change it and make the road better for others so that one day no one will have to feel the pain you have felt.

I could still tell you what we were wearing that day it is burned so clearly into my mind. This is the day my not quite 5 month old baby was diagnosed with cancer.

Over the next few days the news just seemed to get worse, and when all the tests, biopsy, pathology were complete we now knew our baby was up against the odds. He was diagnosed with neuroblastoma, stage 3, high-risk with unfavorable pathology. We were given a bleak 25-30% chance of survival.

The raw pain and emotions you experience at that time are so intense you can barely breathe, but you don’t have time to take it in before big decisions need to be made and treatment starts. You read protocols in a haze and hear risks and side effects that you can’t even think about, because as you are there listening, you know a monster is growing inside your baby trying to take a beautiful life and you need to do whatever you can to stop it.

So treatment started within a day or two. It was a long grueling road, but we were going to take it one step at a time. Bryson’s treatment consisted of  six rounds of high dose chemotherapy.  He actually got seven rounds because they started him on an intermediate protocol and then when his final pathology came back he had to be moved to the high risk protocol, then, after the fifth round of chemo on the high risk protocol, they also had to take his right kidney because it was too involved with cancer.

After tumor removal and the last round of chemo came scans which officially came back as NED (no evidence of disease).  We rejoiced, but that wasn’t even close to the end. The next step was stem cell transplant and Bryson was entered into a clinical trial to receive two back-to-back transplants. This was by far the harshest part of treatment.  Chemo is given to the point of death and the body unable to recover without the stem cells they had harvested from Bryson earlier in treatment. Then just as Bryson was starting to recover and get back to himself, you go back and do it all over again.

After the second transplant he moved on to radiation and had twelve radiation treatments, each of which he had to be put under anesthesia because he was too young to know not to move. The final six months of treatment  included five rounds of human antibody therapy, which is extremely painful and requires a morphine drip to tolerate. And then six rounds of oral Accutane.

Finally treatment was done.

Bryson was still NED and we were supposed to learn how to be normal again in between every 3 month scans. Bryson began getting stronger and learning new things as a two yr old should.  He finally started walking, he was happy and playful, he was getting hearing aids to help with his speech development because chemo had caused hearing loss, and we were even starting to think about preschool the following year.  All the while we got more and more nervous with each upcoming scan, knowing reoccurrence was highest within the first year out of treatment.

Then it happened.  September 1st. 2011 our world was upside down again and again we were in a fight for Bryson’s life.  This time it wasn’t cancer, but a side effect of the chemo he had received to save his life. We learned that Bryson had progressive scarring of his lungs that was irreversible and was quickly progressing. Now we were in a battle without options to “fix” it, within a month from finding out what was causing his severe coughing attacks he was on oxygen all the time. Over the next nine months we tried high doses of steroids, but his oxygen need was increasing constantly. By June we were out of options and we knew the only and last chance to save Bryson was to look into lung transplant. We traveled to St. Louis for evaluation and were quickly told he needed to stay and be listed immediately, his lungs by that time, were only functioning at 35%.

He was admitted to the PICU the next week where he went downhill very fast.  Bryson waited twelve weeks on the top of the list and ended up on a ventilator the last two weeks.  We had some of our darkest days during that time. Helplessly sitting by your child as you see him struggle more and more to breathe each day.   He had terrible coughing attacks that you didn’t know if he would come out of, and we watched his body grow weaker and weaker.

All this happened while separated from our family, me in St. Louis with Bryson, and my husband and other son Braydon back home in Toledo. We didn’t know if Bryson would ever make it out of the hospital, let alone back to Toledo. Each day passed and we were facing last options of life support.

Then it happened.  Bryson’s miracle was here.

We got word in the early morning September 1st, 2012 that there was a donor match and Bryson would go into surgery that evening. We didn’t know where they were coming from or what had happened, only knew that the donor had to be close in size to Bryson. That evening Bryson’s damaged lungs were removed and he was given an angel’s lungs. A gift from a grieving family that in their time of tragedy, choose to give life to someone else.

It was a long recovery, but we finally were able to come back home in December. Since then, Bryson has been thriving and making up for lost time. He has always remained full of spunk and attitude and even when he felt his worst he was full of life. He doesn’t give up, so we don’t give up. And that is how we will continue to live, everyday to the fullest, because everyday is a gift.

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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 Mystee Sudbury

Just before I sat down to write this story about my brave girl, I went out to the mailbox and was met with the harsh reality that often meets me there. Our reality is that our American Dream is teetering on a fault line, ready to drop into the abyss with the slightest shake of the Earth.

It all started in June of 2007, when our spunky five year old daughter, Kaidan, was lying in a bed in the Emergency Department at our local children’s hospital. That night, she was a shell of the girl she had been. She was almost lifeless, deteriorating before our eyes. We found out later that night (after the doctor tried to send us home with a prescription for fluids, rest, and reassurance for mom) that she had a dangerously high white blood cell count, most likely caused by cancer. She was immediately admitted to the PICU and spent two weeks there fighting for her life. Days later it was determined that she had a high risk form of acute leukemia (T-cell ALL).

Our lives were turned upside down in an instant and the next three years were spent in and out of the hospital in a daily battle to save our daughter’s life. We tried to maintain some normalcy for our other children, and quickly realized that cancer was a whole lot more than just a disease. Kaidan experienced many side effects during treatment and when she completed the protocol for her cancer in November 2009 we were elated; blissfully thinking that we had paid our dues and this chapter in our life was closed. Boy, were we wrong.

Here we are, nearly five years later, and cancer is still a daily topic in our home. Now, rather than fighting to save our daughter from cancer, we are trying to save her and our family from the aftermath. Much like a tornado, cancer leaves a wake of destruction that is visible long after it’s gone. The only problem is, it’s not really evident to outsiders. Even close friends and family often believe that once you finish treatment it’s all over. They happily exclaim how good she looks….every time they see her. They tell me to be more positive and to stop worrying so much. I learned really quickly that most people do not understand. Really, how can they?

So, back to the mailbox. Today I was met with a stack of bills for a five day hospital stay Kaidan had in July. Yep, you read that right – almost five years off treatment and she just recently came home from nearly a week in the hospital. It was awful – one of the more difficult hospital experiences I can remember. She was struck with a bout of unbearable pain late one Saturday night that sent us to the Emergency Department. After several hours and no answers, the doctor attempted to send us home…again. It was very déjà vu – you know, it took me right back to June 25, 2007. Same hospital, same vibrant girl, similar pain that was sucking the life right out of her. The faces that came in and out of the room were different, but they were saying the same words – trying to reassure me and send us on our way. But, just like in June 2007, I refused to take my girl home. I knew that Kaidan was not herself and something was seriously wrong. Unfortunately, I was right….again.

Within hours of being admitted, Kaidan was bleeding internally. Losing more and more blood with every bowel movement. After five days of specialists, tests, procedures, medicines, more specialists, and more tests, we still had no answers. So, we were sent home with a non-diagnosis that we have heard before:  We don’t know why this happened, but we don’t see any signs of cancer. Most likely this is a late side effect from the treatment she received. It should get better, after your try A, B, and C. We’ll follow up in a couple months unless it seems to get worse. Yada, yada, yada.

Situations similar to this scenario have happened to us too many times to count. Kaidan seems to have one major medical setback after another. We count on at least one per year. This year, by the end of July, she has already had two. Each of these events comes at a hefty price for our family – emotionally, physically, and financially.

Emotionally and physically, our family is spent. This last hospital stay was rough. Kaidan’s sister is old enough that she understands the seriousness of it all. She worries too much for a 14 year old. She’s wise beyond her years and shows more compassion than some adults. She forgets how to have fun because she has a complete understanding of how fragile life is. I hate cancer for that – robbing the innocence of my kids. We’ve been on this roller coaster for over seven years, and we are tired.

The financial burden that is placed on a family during a time of medical crisis is unfathomable. I wouldn’t wish it on anyone. In addition to co-pays, deductibles, and out of pocket maximums, you are suddenly eating out, sometimes three meals a day. You have added travel expenses, driving to and from the hospital to home and back again. You miss time at work or possibly you lose an entire income. Even a five day hospital stay can sink a family that is living paycheck to paycheck.

We live in a world with amazing people. Times of duress bring out the best and people often jump at the chance to make a difference. Soon though, everyone goes back to their own lives and forget that yours is stuck in quicksand. Financial aid is very prevalent at first, but once you ring that bell, showing you have killed the beast, the world thinks you are done and that everything is now back to normal. It’s easy to see why people would think that the medical bills stop and your life will resume right where it left off, but that is often not the reality.

Childhood cancer research is grossly underfunded and our children are treated with the same chemotherapies used decades ago. The only difference is the cocktails and dosages that we give them. The side effects are harsh, often leaving our kids with secondary cancers or chronic conditions that will plague them for life. Kaidan could be the poster child for this sad truth.

I worry endlessly about our girl. She is a brave, amazing soul. You will almost NEVER see her without a huge smile on her face. But, she fights a daily battle against cancer, even though she’s long been declared the victor. I fear that one day she will get tired of fighting, be it physically or mentally. But here we are, nearly to the five year mark where Kaidan and our entire family will celebrate that she is officially CURED! But please don’t be fooled. Please remember families like us. Families that have won the battle, but are still fighting the war. We are still fragile – in so many ways.

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I was so grateful to receive Mystee’s post, as she highlights the financial toll and ruin so many childhood cancer families are left with after treatment.  It is not uncommon to lose jobs, houses, or insurance in the middle of treatment.  The Affordable Care Act works to ensure coverage for the survivors of childhood cancer, but there are so many other costs associated with treatment.  If you need help finding resources, check out THIS PAGE from the American Childhood Cancer Organization. 

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 Jessica Gerber

You never forget the first time you see your child. You look into his or her eyes and anything seems possible. At that moment, the last thing you are thinking of is the possibility that you will experience seeing your child for the last time. But each day, too many families are faced with saying goodbye to a child after weeks, months or years of suffering.

It needs to stop.

Teddy was a beautiful, beautiful boy, with dark (“mysterious” we called them jokingly) brown eyes, and full, red lips. He was solemn as a baby and toddler, always watching the world around him, taking it all in, figuring it all out. He loved books – both being read to and looking at books by himself. He was the middle child, with an older brother (whom he adored) and a younger sister (whom he loved as much as he teased).

Summer 2009 was not particularly noteworthy. Assorted day camps. A trip to Great Adventure (where Teddy, after talking a big game, chickened out from riding the rollercoasters). Our annual two weeks to Block Island, where we went to the beach, hiked, ate seafood, collected shells and seaglass. A trip to Fenway Park, where Big Papi hit a game-winning homerun.

School started – 3rd grade for Teddy – and two days in he got a fever. Since his brother had just gotten over one, we weren’t concerned. Then a week later he got another fever, and then another two weeks after that. Blood tests showed nothing. Over the next couple of weeks his appetite dissipated and he got tired easily. He seemed blah.

Was he being bullied? Was he depressed? We couldn’t get any answers. He threw up at school on a Friday morning and we took him back to the pediatrician. His liver seemed enlarged so we were sent to get an ultrasound. The ultrasound found fluid in his chest so we went to get another ultrasound, and then went to the ER. We kept descending deeper into a nightmarish circle of doctors, tests and inconclusive answers until three days later, when the PICU doctor walked me into a windowless room, sat me down and matter of factly said, “Your son has a tumor the size of a man’s fist growing in his chest.”

After that moment, everything took on a surreal aspect. Against my better judgment, I Googled “undifferentiated sarcoma” and saw nothing hopeful. First came chemo, which Teddy had a horrible reaction to, becoming delirious to the point that the doctors did a CT scan to make sure he hadn’t suffered some sort of brain damage. The chemo was tweaked, and other, equally toxic meds were added to counteract the negative effects. Teddy’s urine turned blue. One time he peed on my foot and my skin was burned because the urine was so toxic. He threw up, lost his hair, and his white blood cell counts plummeted. Every elevated temperature warranted a trip to the ER.

Then came the surgery. After traveling from one hospital to another, looking for ANY doctor willing to operate, we found a surgeon who said “yes.” One operation that lasted 9-10 hours. A week later, “only” open heart surgery that lasted 4 hours. Miraculously speedy recovery. Home. Hope.

Then radiation. Proton beam radiation was recommended because of the type and location of Teddy’s tumors. Even though there had been a total resection we knew cells remained. The closest proton treatment center was in Boston, 3-4 hours away. We lucked into a condo nearby, thanks to family friends, and spent hours tooling up and down the Mass Pike. When the rest of our family could come stay with us, they did.

Less than four weeks after Teddy finished his radiation we got unfathomable news. Multiple new tumors appeared on scans. We tried different chemo drugs, more radiation, and looked for miracles. Nothing worked. Days at the hospital turned into weeks, which turned into months. Teddy couldn’t eat, couldn’t drink, and even had to spit out his saliva because it hurt too much to swallow. Pain meds caused complications. The meds designed to help the complications caused complications of their own.

Throughout it all, Teddy stayed strong and hopeful. We watched World Cup soccer on TV and talked about how he would play soccer again with his travel team. We planned vacations. Even though he hadn’t eaten in weeks, he wrote up shopping lists for food that he hoped to eat. We read books – Harry Potter and the 39 Clues books. The next installment of 39 Clues was slated to come out in September – we circled the date on our calendar. We watched DVDs of “The Simpsons” and “Lost.” We played Xbox and Wii.

But all the planning and hoping in the world can’t fight a disease for which there is no cure. Undifferentiated sarcoma is so rare that none of Teddy’s doctors had ever dealt with it before. The new, targeted chemo drugs that might have helped him were inaccessible to us. And every day we watched our beautiful baby boy become weaker, sicker, and less hopeful.

Teddy came home for two weeks, but it wasn’t what we’d hoped his homecoming would be. He couldn’t stand, he still couldn’t eat or drink. We spent hours each day back at the hospital getting transfusions. A fever brought him back to the hospital in-patient, and things started to fall apart. Scans showed more tumor growth. His breathing became labored, so he needed oxygen. He was transferred from oncology to the PICU. We had meetings with doctors that no parents should have – discussing end of life decisions, organ donation. Teddy spent less time awake.

On Sunday, August 15, I left the hospital to go home with Teddy’s brother and sister. I said, “goodbye, I love you, I’ll see you soon,” and then tickled Teddy’s face with my hair. He closed his eyes and smiled.

My husband called me at home and woke me up. “Come here now,” was all I needed to hear. As I drove up the highway I kept thinking “it’s going to be OK, it’s going to be OK.” I arrived at the hospital at 1:45AM, August 16, 2010, and walked through the quiet hallways, continuing my mantra. I made my way through the PICU and ran into the attending doctor. He touched my arm and said, “I’m so sorry, your son died 10 minutes ago.”

I walked into the room and saw Teddy lying in his bed. And I knew the doctor was right. He wasn’t sleeping. He was gone. I would never read a book to him, or hold him or tell him I loved him.

How is that right? How should a 9 year-old boy, full of promise, love, intelligence and hope, not see his 10th birthday? How can his family face a lifetime of missing an irreplaceable piece of itself? So many birthdays, holidays, first days of school, which, even as we celebrate, we feel the emptiness and loss.

No child should lose a sibling. No parent should lose a child. And no child should have his or her future stolen by cancer.