WARNING: This was not written for parents of pediatric cancer babies. We already know the horrors of this fight. This was written to raise awareness for those who are completely unaware in order to garner more people on our team, more support for our cause, and to increase the research for a cure. If you or a loved one is currently in or has been through a battle with cancer, please do not let your curiosity get the best of you… this was not written for you, please do not read further!
Childhood Cancer and Death
I abhor the words, “what cancer cannot take from you…” because most of the time, it just isn’t true. Cancer can steal your happiness, it can steal the sparkle in your child’s eyes, it can steal your will to truly live, and it can ruin lives and relationships. This isn’t a game of, “If you’re strong enough, it won’t happen to you.” The strongest, bravest people in the world have lost their lives to this horrible disease. Do not say, “God needed him more.” Do not say, “You still have your other child to live for,” unless you can look at your own children and choose which one to live without.
Kids get cancer too, and childhood Cancer is not just about cute bald kids. Children get less than 4% of federal cancer research funding and have had two new drugs created for children cancers in decades, even though another child is being diagnosed every three minutes and thousands of parents are saying an eternal goodbye to their child because of cancer each year. There are no words to describe the true ugliness that is pediatric cancer, and for many the horrific diagnosis and painful treatment ends in death. The death from pediatric cancer is a particularly gruesome one, and often takes place in a hospice bed in the middle of your own home. The home you will have to live in with the memory of your child’s last painful moments in your arms. The parents are often left to decide when to stop food and water for their own child. Keeping food and water going into their body makes their death a much more prolonged and painful one, but the strength it would take to make the order to stop feeding your child is an unimaginable one for most. If they’ve received too much liquid, their lungs fill with water and blood gushes from their face the moment their body finally shuts down. It’s common sense that a young child wants to live, but their will and struggle to live become so very real when you watch them die.
The lucky survivors will not likely live their full life span. They will suffer from later cancers from the very treatment meant to save them. They will suffer depression, anxiety, PTSD, chronic pain, brain damage, organ damage. They will have difficulty obtaining life insurance, they are likely to have difficulty maintaining relationships, and they are unlikely to be able to have healthy children of their own one day.
Parents will endure right alongside their child severe PTSD, depression, and anxiety, hundreds of sleepless nights, months of nonstop screaming, crying, and vomiting, knowing that your baby is far too young to understand why you went from being their protector to their abuser overnight, or why the comfort of their parent’s loving arms suddenly betrays them to hold them down to be tortured by strangers in masks. In the eyes and heart of a young child, there is no difference between being severely abused by their once loving parents and undergoing the horrors of treatment. This is perhaps the greatest burden a parent bears through diagnosis. When a young child ultimately dies, they sometimes die believing they were betrayed by you, abandoned by you, hated by you. They die while begging for you to save them from their inhumane suffering and from their unjust death.
They often lose their ability to talk, walk, eat during treatment and then again before death. They suffer sometimes years of unbearable torment. They say they will get used to being stuck with needles. It’s not true! They say it will get easier. Unfortunately, for many children it never gets easier because they pass away in the throes of treatment, and for many parents it never gets easier because they will live every day of the rest of their lives with only the memories of their child’s last dreadful months here.
My own daughter was diagnosed with an aggressive brain tumor in May of 2013, at two years old. I feel it best to speak of my own experience when trying to convey what childhood cancer really means. That first week her life transformed from that of a happy, dancing toddler, to that of a forever-changed cancer patient. Most pediatric cancers are not caught early because they are not screened for cancer until they show symptoms; by the time they show symptoms, the disease is usually far progressed. By the time my daughter was showing seizure symptoms and vomiting, I was told that the size of the tumor alone would kill her within days. Three hospitals, three ambulance rides, and dozens of specialists later, I was then told that the surgery to reduce its size came with a very high probability of death on the table. Because of the location of the tumor, it could not be removed, but the neurosurgeons did what they could to de-bulk it. The brain damage and partial paralysis she suffered from this surgery were greatly overshadowed by the fact that she lived. It’s ironic what things that once would have shattered our entire world become “minor” given our circumstances. Things only got worse.
She was accepted into a research protocol at St. Jude (thank God, truly), and she stopped breathing our first week there and underwent an awful, two-hour long, horrendous resuscitation (the most difficult she’d ever performed, according to the ICU doctor, and the first one where a parent willingly stayed and didn’t have to be removed by staff). She was immediately transported by ambulance and rushed into an emergency surgery at Le Bonheur to install a shunt to relieve the pressure and drain the fluid on her brain. She began chemo while still intubated, and awoke days later (once the high-dose chemo had time to cause blisters from the tips of her lips, down her throat, and through her entire GI tract) with a tube down her raw throat and boards on both arms to keep her from pulling at it. The pure terror in that little girl’s eyes is something I can never erase from my memory. She couldn’t even cry properly, but the tears still managed to make their way down her face even without her moving or making a sound. I begged them either to keep her sedated or to take the tubes out. They explained that they needed to wake her up to test her ability to breathe on her own, but all of the medical reasoning in the world could not make this okay.
The following months are a blur of never ending pain and vomiting, atrophy of both legs, incessant crying, months of laying a hospital bed, being able to hear other babies cry through the vents and my daughter’s heartbreaking empathy for them, threat of a feeding tube, open wounds where her chemo-laced urine would touch her skin beneath her diaper and that I would eventually become so accustomed to them that I would refer to them as a “diaper rash,” constant C. diff, a second emergency shunt surgery where she could have no pain medicine because of her history of stopping breathing, my eventual decision to move to Colorado, cold and isolated, to seek relief for her, fighting bad laws and crooked politicians while fighting for my daughter’s life, being forced to do her medical treatment, nutrition through her port, and chemo at home, having to wear gloves to change her diapers because the chemo is so toxic there’s enough of it even in her urine to undoubtedly cause cancer (yes, in her again as well), and trying to keep her ten-year-old brother sane through this all. Childhood cancer is not fair. For some, it only gets worse.
My daughter, Dahlia, is one of those lucky survivors. Last month, she became part of a small percentage of children who are diagnosed with high risk/ high grade brain cancer who make it two years past diagnosis. Now that I have said my piece on what childhood cancer means to us, let me share what the death of a pediatric cancer patient means to me. Now, I am not qualified to speak wholly on this subject as I am not the parent who has lost a child to cancer, so I will only speak as to my personal experience and what has been shared with me.
My initial experience with the death of a child at the hands of pediatric cancer was a rude awakening. I have battled with envy from the day my daughter was diagnosed. Envy for parents who will never know this nightmare, and even envy for children with a lower grade or more treatable diagnosis. Envy is the ugliest and trickiest of emotions, and as the bible says, it should be feared more than death itself. When my daughter was first moved to the chemo ward at St. Jude, we met this vivacious, adorable little girl the same age as her. I will never forget the brightness of her smile and the deep dimples on her cheeks that came with it as I saw her for the first time, strolling down the hall with an IV pole holding her mother’s hand while I pushed my own daughter in a wheelchair and wondered if she would ever smile, much less walk, again. I could not comprehend how they had made it. As I spoke with her mom, envy began to emerge. Her brain tumor had been completely removed before treatment, so she was technically cancer free. Why, at the leading childhood cancer hospital with all of the rarest diagnoses in the entire world did it seem that still my daughter was the worst of the worst? How was this possible? Why was this our life? A few weeks later, Dahlia was well enough to be pushed in her wheelchair down the hall to the chemo lobby and we found them there playing. There were always volunteers in the play area, and two-year-old Dahlia being without a father herself was particularly fond of any men nurses or volunteers, and awkwardly called them all daddy. This friendly guy across the table from us began playing with her and when Ellie also began calling him daddy, I made a comment to her mom that I’m glad my daughter wasn’t the only one! Much later, I came to find this guy was actually Ellie’s dad, he also just happened to be a super nice guy. Again, a tinge of jealousy. A few months went by and they were able to take Ellie home for a short vacation before she was scheduled to start radiation. During that time, whatever trace cancer cells were left in hiding took hold and spread like wildfire, as is the greatest fear with brain cancer. They had an early Christmas at home for her, and then she was gone. Incomprehensible. Her passing was a selfishly painful loss for me. I was guilt-ridden for being so distraught at another parent’s loss, as this was their sadness and it did not belong to me. I was guilt-ridden for using their loss to fuel my own fear for my daughter’s fate. I wanted to learn how to be there for other parents without taking.
My second experience with the death of a child to cancer came with meeting my friend Sonja, a beautifully strong woman who I admire deeply. She moved to Colorado around the same time I did, and traveled through mountains to meet me at my home, making every attempt to give her son relief from his suffering and to try to save his life. I never met her son in person, but I met him through her… Through pictures, but mostly through her eyes, her words, and her voice when she spoke about him. He passed away not long after I first met her, and she fought with every ounce of herself until that very last moment. The moment that can never be undone or forgotten. The moment your child ceases to exist in flesh for all the days you are left to live partially empty until your last day on earth. The moment every parent who has lost a child prays comes sooner than later so that they can be reunited with their baby. The prayers that come with the baggage of guilt for a parent who has lost a child but also has other children still here. To be torn between wanting to go where your one child has but wanting to appreciate the time left with another is an emotional burden I cannot imagine.
My most involved experience with the death of a child to cancer came last year. My friend Maria and I had grown close quickly over the prior year. Just because a parent is a cancer parent does not mean you’re going to click and become best friends; but Maria and I just fit. Not only did her son have the same diagnosis, we were on the same page in so many ways. We would have likely been great friends before cancer, it’s just that the diagnosis of our children lent us the opportunity to meet, and our shared experiences gave us a level of trust, empathy and understanding with one another that runs deeper than most any experience in life can. My first priority when returning home to Florida from Colorado was to visit her. I went with my two children, as Maria insisted Ethan was doing pretty well. I was taken aback when I arrived to find him the size of the hospital bed he was laying in, bloated with the steroids that he was taking to relieve pressure from his brain, immobile and asleep through our visit. My eleven-year-old son took it in stride and almost seemed to handle the situation better than I did. He had a lot of questions on the way home, and I tried to act as though this was all just normal and disassociate it in any way from our own circumstances. Looking back, I am sure that my son is the strongest, most compassionate child I have ever met. Processing that this monster had taken this little boy’s body and was working hard to take his life was impossible. Ethan was my son just the year prior. These children are all of our children. The day before our child was diagnosed, we were you. Completely and blissfully unaware.
About a week after that visit to Maria’s, I got a phone call in the middle of the night from Maria asking me to bring her coffee. It was midnight, and I live a few hours away from her, so I knew she needed me, and I went. Within a week from the moment I arrived, with coffee, at 3 a.m. that morning, my life, my soul, every ounce of who I am as a human being living this short time here on Earth was transformed. When I arrived, he was in the same state he was in at my last visit, but what could not be seen with the eyes was that his vital signs were dropping and his death was approaching. Maria is a Marine and Ethan is an Honorary Marine. Marines don’t die without permission, and as his commanding officer it was Maria’s job to give him the order. She had to end his suffering and tell him to go. Friends came and went over the next few days, returned, made conversation, sat in silence, and everyone walked heavy with the anticipation of what was to be the worst moment of this woman’s life and the last breath of this sweet child. Maria positioned Ethan slightly onto his right side and laid beside him to his left. I sat holding his hand on the right side of the bed. Her promise to Ethan was that hers would be the last face he would see. Any time his beautiful thick eyelashes fluttered, I would move his face towards his mother. She startled me when she suddenly flung herself up and towards me, with her hand on his chest and her large brown eyes devoid of life and filled with terror all at the same time widened and pierced into mine, searing into me as she screamed, “I’m so afraid!” I was afraid then, too. I reached over and brushed her hand and her arm and forced myself to maintain my composure as my eyes welled and my body shook. A few hours later, as I stared at his face and waited while Maria still laid with her hand on his chest, the blood came without warning, gushing from his nose. I reached behind me to get a rag from the nurse with one hand while I placed my other hand on Maria’s face, turning it slightly and telling her, “It’s okay,” to try to buy just a moment to get some of the blood cleaned up before she would realize that the breath she just felt was in fact his last. It wasn’t okay. It will never be okay. Her close friend who is also a nurse began instructing the hospice nurse on duty to get the supplies to suction the blood while Maria kept holding her baby and weeping the most unforgettable sobs a person is capable of. Just like that, he was gone. An entire life, a very real little boy, stolen. Another of Maria’s close friends flew in and we spent the week helping and preparing for the funeral. I need not go into detail about the funeral that should never have had to be planned for a little boy who should still be here. The morning after the funeral, I was scheduled to speak at a conference about pediatric cancer. While I was getting ready in the bathroom, Maria and I made eye contact in the mirror’s reflection and she said, “Tell them I don’t just have to live with the loss of my baby, but I have to live with knowing there may have been something I could have done to save him.”
Today marks one year since Ethan’s passing. Today, I am even more in awe of his mother, and all of the parents who live through the death of their child. We have lost so many beautiful babies since. Every single one is one too many.
My mom has told me that I am strong… that if my daughter passed, I would continue to live for my son and would find the strength to continue to fight for other suffering children. She is wrong. I would have no choice but to die with her.
Since finding out about the scarcity of hospice nurses who are willing or capable of taking pediatric patients, I have made myself available to any parent through their fight, even at the last moments. I wish more people knew and understood that the world of childhood cancer is like a horror film about psychiatric experiments from the 1920’s. It is very ugly and it is not about cute bald kids. We do not have funding for research, so parents and our children aren’t given the tools we need for the battle. We cannot fight alone and we need everyone, including those lucky enough to never know this world firsthand, fighting with us. This is why it’s important that we are honest about what pediatric cancer really means. There was a time when a child diagnosed with cancer meant their parents took them home to die in secret. That got us nowhere. No one wants to open their eyes or their hearts to the pain of our world, but we are commanded to bear one another’s burdens. If raising a child takes a village, imagine the village it takes to raise one in our world. Be part of that village. This is your formal invite.
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