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 Moira Byrne-Philbrook
When your child is diagnosed with a potentially fatal illness you wonder why. She has a pure heart and soul, so why is she sick?? She is kind, and too young to have done anything she might have to “pay” for. You run through the whole “sins of the father/ mother” thing. You make deals with God, Mother Nature, the universe, anyone who might listen.
There is never an answer, though.
Maggie and Mom, Moira. Photo courtesy of Flashes of Hope, Catharine Morris photographer.
Fear becomes your new normal. You hope all ends up okay, but the statistics aren’t fabulous. I would count the number of children we knew of with cancer, and could convince myself that Maggie wasn’t going to be the one to die.
Maggie responded so well to treatment, I got to the point that I actually believed she was going to be a cancer survivor. As I’ve said, though, you can’t turn your back on the beast.
When your child dies, you play the head games again. Why her? Why my child? What did we do? What does this mean? You figure you don’t need to keep up your end of any of the deals you brokered with God, Mother Nature, the universe, or anyone who might have listened. Once again, there is never an answer.
There are plenty of, shall we say, schools of thought about the death of children. People say she’s in a better place, she’s not suffering. Perhaps she avoided a horrible future by dying young. Late effects, which are no picnic, have been avoided. In the end, it’s all just sad, and it all just sucks. No matter what, we’ll always believe that the best place for Maggie is right here with us, living the life she was supposed to lead.
Maggie at the New England Regional Cheerleading Competition, three months before diagnosis.
We are on vacation, and have been able to spend some time with Maggie’s friends. I find great comfort in spending time with these teens. I would like to think they find comfort in being with our family too. I want my sweet, beautiful girl back, but since that can’t happen, I am happy to surround myself with her friends.
Perhaps, someday, we will get some answers. Will someone touched by Maggie find a cure for cancer? Will something good come from all of this bad? Who knows?? I do know that sadness is our new normal, and we miss our girl.
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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 Alethea Mshar
Let me first tell you about my son. Benjamin is a handful. He is a willful child, facing obstacles with determination and perseverance. Benjamin was born with a bonus, at least that’s what I like to call it. He has a bonus 21st chromosome, medically referred to as trisomy 21, commonly referred to as Down syndrome. We brought Ben home at 3.5 months old in May of 2006 as his adoptive parents, believing that, other than the bonus, he was healthy, strong and had no additional challenges.
Benjamin
Boy, how wrong we were. Ben came home in May, and by August he was diagnosed as moderately/severely hearing impaired, and by his first birthday his thyroid had failed, he had been hospitalized with RSV, and was failing to thrive, not growing or gaining weight, and falling off the growth charts. After numerous phone calls, pediatrician and specialist office visits, we got the answer of Hirschsprung’s Disease, and Ben had a surgery to correct that.
Shortly after the surgery, his struggles took on yet another form, and after several hospitalizations, Ben got the diagnosis of Cyclical Vomiting Syndrome. Once again, we got the situation under control with the help of a team of doctors, and finally, at the age of 2-1/2 years old, Benjamin started thriving, developing in leaps and bounds. We thoroughly enjoyed this period, having no idea just how short lived it would be.
In late fall of 2009, Ben lost energy, had vague symptoms of malaise, and was just plain grouchy. That December, we had a family trip planned to Great Wolf Lodge. Ben had some vomiting symptoms the morning we left, but after some hemming and hawing, we packed up his nausea meds, some Tylenol, and anything else we thought we might need, just figuring it was a cyclical vomiting issue that could be managed.
By the next morning, after spending time on the phone with his pediatricians and specialists, we took him to the local emergency department. From there, he was sent to the Children’s Hospital near our home, where he stayed for a week with odd complaints which ran the gamut from fever, diarrhea, vomiting, and leg pain. At one point his white blood cell count was elevated with blasts noted (immature white blood cells, which are the telltale sign of leukemia), but after review by the oncologist, it was determined to be transient leukemia, which is not uncommon in children with Down syndrome.
After finding no real answers, Ben recovered to the point that we all agreed that inpatient care was not necessary, and Ben was discharged on December 21, just in time to celebrate Christmas at home.
The celebration came and went, with Ben showing no real improvement. His leg still hurt, and he just wasn’t himself. By New Year’s Eve we were back on the phone and once again ordered to the emergency room. This time the answers came quickly, even abruptly, and were grim. Ben had blasts in his blood again, but this time there wasn’t much doubt that it was a true leukemia, and by the end of the day the bone marrow biopsy had been completed, and we had our answer.
Benjamin in hospital.
Certain moments in life seal themselves in your memory, and that day had several of those moments. In one of them, a physician’s assistant named Aaron, who because a trusted caregiver throughout the treatment, did the bone marrow biopsy. Aaron is a young, big, strong, capable man. When he came to tell me about the biopsy, he was clearly stricken. He had held out hope for little man, that there was still a chance that the bone marrow biopsy wouldn’t show leukemia. But when he bored into the bone to get the sample, something he had done countless times, Ben’s bone splintered, a dire sign. Seeing this professional, so big, so seasoned, so clearly a together person, break his composure when delivering preliminary new to me was simultaneously touching and nearly a breaking experience.
By evening, Ben’s primary oncologist delivered the results in the most astonishingly gentle and uplifting manor. It’s impossible to convey how such a dire conversation could cement a transparent and trusting relationship which would carry on for nearly six years, but to this day I adore these men who brought compassion and hope in the darkest moment of my child’s life, which had already had plenty of challenging times.
Along the way, there were so many dark and challenging setbacks and difficulties. Many additional hospitalizations were required, and many setbacks which have yet to be overcome, including a 20 point IQ drop, urinary incontinence, and other difficulties which will likely prove to be lifelong.
Although I’m still not exactly clear on why or how, there is a connection between Down syndrome and leukemia, with higher incidence of both Acute Lymphoblastic Leukemia (the type Ben had) and Acute Myleloid Leukemia. Children with Down syndrome typically have better than average outcomes with AML, and worse than average outcomes with ALL. The treatment for a little boy with ALL is automatically 3-1/2 years.
Many of the chemotherapy agents are especially toxic to people with Down syndrome, and the doctors often have to tweak the road map of treatment to avoid toxicity, which can increase odds of relapse and treatment failure. We were very thankful to be able to contribute to cancer research by participating in clinical trials, and equally grateful to all those who participated in trials in the past, which certainly improved Ben’s outcome.
Alas, Ben is nearly 6 years out from diagnosis, and over two years out from end of therapy. We are told that relapse at this point it highly unlikely, yet we often struggle with any symptom that appears to coincide with any of his leukemia symptoms. Our whole family has been traumatized, and though we often go through life in a reasonably normal fashion, so often the fears rear their heads and re-traumatize us, more often than not coming straight out of the blue where they are totally unexpected.
Benjamin’s “reasonably normal” family living with the trauma of childhood cancer, which never feels normal.
This path has changed everything. It’s a path I want others to understand without walking it themselves. My hope is that by raising awareness, we can raise funding, and empower future childhood cancer fighters to a better outcome.
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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 Lisa Hall
September is Childhood Cancer Awareness Month! September is Childhood Cancer Awareness Month!
This is my mantra every September as soon as I found out that this is indeed an important month to recognize children and the challenges they face struggling with cancer. I share this on my Facebook page, I share this at my work and I share this to the public as I email government officials asking them to make the above statement in front of other Government members. I would like other people to proclaim this and not just because they are a parent who received the news, “there is a mass in your daughter’s head and we can’t remove it.”
This is the moment of greatest impact for us, my husband and I. We had many, many, many moments that hit us in the gut. For instance, when Peyton had to get her radiation mask made. What a difference there is between a children’s hospital and an adult cancer institute.
At the children’s hospital, she received some lovely sleepy gas for her first ever sedation. At the adult cancer institute they don’t house the gas for children. They poke a 4 yr old child repeatedly (who is screaming and crying) until they find her tiny vein. Then tell me, “Good job, Mom!” Then Mom has to walk into a waiting room where Dad is white hot mad because he could hear our little daughter screaming and crying and he was helpless.
That’s the story I am going to share with you. The first moment we felt completely helpless and hopeless.
In May 2010 I had noticed a slight eye turn in Peyton. It wasn’t something I could just ignore, so I booked an appointment with an eye doctor. Initially the optometrist said she would just need glasses for a far sighted condition. I just needed to bring her back in a week to be fitted for glasses.
One week later there is a head tilt as well as the eye turn. The optometrist books an appointment for us to see an ophthalmologist in just under three months, stating that she thinks there may be a greater need to have the eye turn examined. That it’s a pretty normal occurrence and easily fixable. The tilt? Well that’s just Peyton compensating for the eye turn.
August 4, 2010. By now the eye turn and head tilt remained and now Peyton started to have a slight facial droop. We didn’t notice it at the time but as we look at the Canada Day picture above, it is clearly there. We spent hours in the waiting room of the ophthalmologist and when he did see Peyton he was quick to notice the head tilt and the facial droop. His best guess was that she had palsy of the 7th or 8th nerve in her brain. He called down to the connecting children’s hospital and told the doctors that our daughter needed to be seen NOW. We even had a security escort through the winding corridors to the emergency room of our children’s hospital.
When family arrived to provide some support, my husband and I went out into the parking lot and I broke down and cried. I was terrified that she might have to have her brain cut in to. Why did this happen? I wept. I worried. What I would give today for it to be just a palsy of the 7th or 8th nerve.
A couple of days later, we are brought in for Peyton’s MRI and she is kindly and gently put under with gas before being poked and sedated. When she woke we were in for an incredibly huge surprise. We hear screaming, we hear yelling. I am brought into the recovery area to a manic child. ‘This is not my daughter,’ I think to myself, ‘What has happened?! Why is she like this?’
Peyton is beside herself and she cannot be calmed no matter what motherly technique I try. I feel absolutely helpless. Little did I know at that moment that that was a small taste of what “helpless” actually is. A nurse and I strap her into a stroller for safe transport up to her room. We are literally walking like we are training for the speed walkers championship for the elevator. A doctor in scrubs comes running alongside us. My husband looks at her and demands to know why our child is acting this way. We are told right there, in a corridor of the hospital, steps away from an elevator that will whisk us off to a place where I can hold my child and comfort her….”there is a mass in her brain. It swelled up during the MRI and this is what is causing her to act in this manner. When we get her upstairs we will give her steroids to relieve the swelling.”
No time to process this. No time to cry. No time to actually breath.
Helpless, definition:1. unable to help oneself; weak or dependent. 2. without aid or protection. 3. deprived of strength or power; powerless; incapacitated: 4. affording no help.
In that moment we were all of these things. “There is a mass in her brain.” The next hit came when they actually described to us the type of brain cancer our sweet daughter had. DIPG. She’s is terminal. Helpless. The average survival is 6-8 months.
Helpless is now coupled with the word hopeless.
Hopeless, definition: 1. Having no hope; despairing. 2. Characterized by despair. 3. Having no possibility of being solved or dealt with; impossible. 4. Having no hope or chance of changing or improving
The story could end there. We chose for it not to.
Disney smooches from Mom and Dad
A new word rose up. Hope. The root of that earlier compound word that tries to strip you of your essence, but this word holds more power you see. It holds more power because with it, you gain a power inside you to muster an immeasurable amount of strength that will allow you to live through a myriad of things your four year old child will have to endure and you will be pushed to the sidelines to watch. You will find it in you to cheer and laugh. You need hope because (as stated in a quote I once read), you never know what tomorrow will bring.
So we made many, many memories. We found joy. We welcomed a new sister for Peyton. We endured because of hope. Peyton beat the average. She had a honeymoon phase for a delightful 12 months before the smallest of changes began to occur again. She remained with us 19 months after diagnosis and left us full of hope even after she left this world March 2, 2012.
My hope is a different kind now. I have many different hopes. I suppose those are what get me out of bed on the hardest days. But it is the strongest and most resilient word in the Cancer world.
Thank you for letting me share our story.
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Mary Tyler Mom 