A decade ago, on a bright Saturday morning in August, I took my 11-year-old daughter, Ana, to an emergency clinic. She had a terrible stomach ache. Something seemed wrong.
That morning, there was a stick bug on our car’s passenger door mirror. The bug stayed in the mirror for the entire 10-minute ride. We had laughed about it – Ana and I – and I took a picture and posted it to Facebook with the caption, “coolest bug ever!”
The clinic doctor examined Ana briefly, noted how she winced and recoiled when he gently touched her stomach and advised me to take her to the hospital. I had asked about appendicitis and he agreed it was a possibility.
Maybe the doctor knew it was something worse. He had examined her stomach – bloated and hard – and offered to call an ambulance. A burst appendix is an emergency, but I was worried about how much the ambulance ride would cost. I drove her two miles (three kilometres) to the hospital with the stick bug still clinging to the mirror.
And so it was that about five hours after I posted a photo of the stick bug to Facebook, our lives changed forever. That is how quick it happens. That is how hard the line was between before and after.
It haunts me – that car ride, the feeling that something was very wrong, the hope that it was just appendicitis and not something much worse.
And as we move through yet another September, a month recognised around the world for childhood cancer awareness, it still haunts me.
A lifetime of missing
Childhood cancer leaves a trail of broken hearts. It leaves a lifetime of missing. For some of us, it leaves boxes of schoolwork, drawings, and unfinished notebooks. The measure of a child’s life.
Cancer pulls your child deep into the bowels of hospitals and treatments and endless tests. Cancer is relentless. At least, Ana’s was.
She spent the first 40 days of the 2012 school year in the hospital. It was all of September – the month she should have been testing the waters of 6th grade.
It was in that foreign place with its white walls and sterile corners that a surgeon showed me her tumour for the first time. He pointed out how much of her belly was filled with tumours. He patiently explained that she would need a liver transplant to survive this thing.
But the oncologist had other ideas. She wanted to try chemotherapy. And the specialist at Memorial Sloan Kettering in New York City – a man renowned for treating paediatric cancer – agreed. He urged us to try chemo before going straight to a transplant. The goal was to shrink the tumour and try to save Ana’s liver. I remember my desperation, how much the transplant scared me, and how feverishly I wanted to save her liver.
Her doctors could not agree, even then, on how to proceed. They left the scariest decision of our lives up to us.
One of two bad choices
We wanted to spare her a lifetime of anti-rejection drugs, to give her a chance at a normal life. So we chose chemotherapy, one of two bad choices even though no one – not one single doctor or specialist – could promise us it would do any good.
Her cancer was too rare. There was no treatment for it, no precedent, no studies that showed promise. We had fallen into a black hole of medicine. Ana had cancer called an inflammatory myofibroblastic tumour (IMT). It was so rare that the experts did not know how to treat it.
IMT is typically associated with benign growths in adolescents – complete removal of the tumour via surgery was the only treatment at the time she was diagnosed. But Ana’s IMT was malignant with a gene mutation we would later learn was completely novel. That is, no one had ever had Ana’s exact type of IMT.
The tumour had also presented in an incredibly rare location – the portal vein of her liver. Ana’s tumour started in this key blood vessel and grew incredibly large, engulfing her liver.
This is a common story with cancer. A rare presentation of a rare cancer limits treatment options. Surgery was supposed to cure her because IMT rarely returns and almost never spreads. But Ana’s did both.
The funding deficit for paediatric cancer had become a bull’s eye in the centre of my child’s belly.
We had to tell Ana that she needed at least six weeks of chemotherapy. That was long enough to know if the tumour would respond to treatment. We had to tell her that it would make her sicker before it (maybe) made her better. We had to tell her that she was going to lose her hair.
And, look, you can tell an 11-year-old girl that you are trying to save her liver until you are blue in the face. You can try to explain that you want to spare her a lifetime of taking the harsh immunosuppression meds needed for her body to accept a foreign liver.
You can tell her that too much medicine can lead to secondary cancers. You can attempt to communicate that you want her to have a future free from sickness and disability in a country that does not have any reliable health care infrastructure.
You can say these things to an 11-year-old – again and again – in a thousand different ways. But all she hears is that she is going to lose the gorgeous waist-length hair she’s been growing out for two straight years. All she knows is that she’s going to go back to school as “the cancer kid”.
Ana begged us to choose the liver transplant instead of the chemo. She wanted it over and done with. She did not believe the chemotherapy would work. More likely, she just did not care. She wanted to swiftly exit the world of cancer and this was the fastest path out.
But we clung to the tiny chance that the tumour would respond to treatment. Back then, we still believed in miracles and in the power of modern medicine. I know that is not a fair thing to say. It was not the doctors’ fault. But the truth is that I was incredibly naive. I thought they had figured out how to save kids from cancer a long time ago.
Childhood cancer by the numbers
I had heard the surface-level statistics – that most kids diagnosed with cancer were treated successfully, that deaths from cancer in children and teens had decreased by 50 percent since 1970, and that the five-year survival rate was close to 90 percent.
But these statistics do not tell the whole story. They mainly apply to the most common cancers in kids such as Hodgkin lymphoma and thyroid cancer.
When your child draws the short straw – and has a very rare cancer – the statistics look very bleak indeed. The long-term survival for children with the rare cancer diffuse intrinsic pontine glioma (DIPG), for example, a type of tumour that grows on the brainstem, is essentially 0 percent.
Ana drew the short straw. Chemotherapy did not touch her tumour. She lost her hair for nothing. Six months after her hair fell out, she got a liver transplant. Her heartbreaking sobs the day I told her she would have to get chemo still haunt me. Just like that damn stick bug.
A lack of options
Childhood cancer gives us a thousand terrible memories – pain, infections, missed birthdays, sombre-faced oncologists standing in front of screens displaying the inside of our child’s body.
It leaves us grieving the things we will never get to say and milestones we’ll never celebrate. It leaves us bereft, having ripped us away from the future we thought we were building.
According to the Pediatric Cancer Research Foundation, a US-based nonprofit organisation, childhood cancer is not one disease but includes more than a dozen types with many more sub-types making it challenging to develop precise therapies, and yet, paediatric cancer research is heavily underfunded.
Developing new targeted treatments requires constant research and innovation – which requires funding.
Cancer research in the US often does not focus on developing new therapies specifically for children’s cancers, but broader cancer research can – and does – benefit children by creating new therapies and treatment options that help children.
Even so, the amount of money allocated specifically for childhood cancer research in the National Cancer Institute’s (NCI’s) budget remains incredibly low. The Cancer Moonshot programme announced by President Joe Biden in February 2022, allocates $80 million for paediatric cancer initiatives in the fiscal year 2023. That amounts to roughly 1.1 percent of the National Cancer Institute’s $7.2bn budget for the fiscal year 2023.
Even as scientists work to improve treatment options for children with cancer, few exist. I know, firsthand, what that means.
A lack of options means children, like Ana, must take treatments intended for adults or settle for those that weren’t developed for their specific type of cancer.
A lack of options means that hundreds of children in the US and many more throughout the world will continue to die from cancer every year.
It means that many children will experience long-term side effects from cancer therapies that were not initially developed to treat small bodies.
It means that adults who survive cancer they had as children are more likely to experience hearing loss, memory problems, and develop heart valve abnormalities. They also are much more likely to have at least one debilitating or life-threatening health condition by the time they are 45 years old.
It is not just their physical well-being that is affected. Harsh treatment means that up to 75 percent of kids who survive cancer will experience posttraumatic stress disorder (PTSD), depression, and anxiety from the stress and trauma of treatment.
It means that some parents will die sooner than they would if they had not lost a child to cancer. The risk of death to parents, particularly mothers, who have lost their children increases by more than 300 percent in the first two years after losing a child. This is called the “maternal bereavement effect”.
Children are worth saving
I am aware that every day thousands of families’ lives will shift from before to after in the time it takes for an emergency room physician to glance at some scan results.
I am exhausted by the mountain we must climb globally so we can give our children better options than Ana had.
I am tired of September’s gilded ribbons, of golden harvests, of yellow school buses that promise new beginnings. I am tired of trying to convince the people with the money and the means that children are worth saving, the research is worth paying for, and the cost of childhood cancer is too high.
I am running out of ways to talk about this horror, but it is September, so I have to try.
The chemotherapy that took her hair did not save Ana. Neither did the liver transplant she had six months later. The oral chemotherapy she took for years and made her anaemic, thin, and exhausted. That did not save her either. The additional surgeries, radiation, and targeted chemotherapy bought her some time, but ultimately none of it saved her. She died on March 22, 2017, at the age of 15.
I am haunted by the promise of my daughter’s life, taken from her at the exact moment she began to understand the scope of what she was losing.
Her final diary entry is another thing that haunts me.
“I’ve never been so consistently sad as I am now. All I want to do is wait for death. I hope I’m happier there. Maybe I can finally relax and be able to exist without feeling so, so sad.”
Gone for 2,000 days
These last words, written by my child a few weeks before she died, weigh on my soul. This is part of her legacy, a consequence of too few options for children like Ana. There was simply no way to outrun the beast that kept growing inside her.
Ten years ago Ana spent the entire month of September in the hospital. I hated it there, hated what it was doing to her, hated how trapped we all felt. I wanted nothing more than to get the hell out of that place of sickness and despair.
And now? I want nothing more than to return to her bedside, to a time when Ana was alive and we did not know how very limited her options were. On September 12, 2022, smack in the middle of Childhood Cancer Awareness Month, Ana will be gone for 2,000 days.
That is what having limited treatment options for children means. It’s why Childhood Cancer Awareness Month exists. This September, like all Septembers, will come and go. But Ana and many unlucky children like her, will not be here to see it. That will always haunt me.
Note from the author: Many parents start foundations and funds to honour the child they have lost to cancer. Here are a few notable ones created by people I know:
The Benjamin Gilkey Fund for Innovative Pediatric Cancer Research: Benjamin Gilkey (“Benji”) was seven years old when he was diagnosed with Pre-B Cell Acute Lymphoblastic Leukaemia. His leukaemia was resistant to treatment. After two years of frequent hospitalisations and intense treatment, he died on February 11, 2017, at the age of nine. Benji’s parents, Laura and Mike Gilkey created the fund in partnership with Johns Hopkins All Children’s Foundation. The fund supports the research of Dr Oshrine, Benji’s oncologist, to fund clinical trials and other research within the Johns Hopkins All Children’s Cancer and Blood Disorders Institute.
Maggie’s Mission: Maggie Schmidt was 17 years old when she passed away from malignant rhabdoid tumour (MRT), a rare aggressive cancer more common in infants and small children than adolescents. Maggie’s parents, Donna and Steve Schmidt, founded Maggie’s Mission to help raise awareness about paediatric cancers, fund research, provide financial support for families impacted by childhood cancer, and more.
Maddie’s Mark Foundation: Madeline Musto (“Maddie”) was five years old when she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a type of incurable brain cancer that is almost always lethal. Because of its location in the brain stem, the tumour cannot be treated with chemotherapy or removed surgically. Maddie passed away just five days after she was diagnosed in 2012. Maddie’s parents, Erin and Matthew Musto, established their foundation, to provide “best days ever” for children suffering from major illnesses. The foundation also funds financial grants for programmes that enrich children’s lives.
