As a parent, I could never imagine giving up, not fighting for my child's life... it is incomprehensible. But life has a funny way of forcing us to face the incomprehensible. You see, there was a day when I was forced to my very knees praying to the heavens that the end would be quick and merciful for my son, my Noah...
It was December 2011. Noah had just turned 11 that November, and was an active, bright, and energetic boy. He enjoyed playing baseball, and was now playing hockey. He started to experience curious symptoms: tingling in his right cheek and a numb feeling, which the doctors could not explain, and then excruciating headaches. Trips were made to emergency rooms and doctor's offices. There were suggestions of possible concussion from hockey, eyeglass prescription changes and sinus infection. Finally, one morning, he awoke with his right eye protruding, and feeling so strange that he could not describe the sensation. This was terrifying for him, and for us. Then the nosebleeds began. We set out to our local children's hospital, desperate for answers.
The vision in his right eye was severely diminished, and it was obvious something was dreadfully wrong. After a series of tests, IVs, and much terror, I was finally told in the middle of the night that my son had a tumor on the right side of his face, extending into his nasopharyngeal cavity. We were admitted once a room was available, and he underwent a series of additional tests to determine the cause. I remember shaking in fear and shock in my little cot, not knowing what was ahead but terrified for my boy.
Noah was diagnosed with Ewing sarcoma, a rare bone cancer. It had taken longer to diagnose because it did not usually occur on the face. The tumor was large, over 8 cm, and the side effects of treatment were harsh. To make matters worse, surgery was not an option due to the location of the tumor, which was already extending into the brain. Radiation would be required, and we had to act immediately due to the aggressive nature of this disease.
Noah had a few rounds of chemo, then immediately started 31 sessions of radiation without a break. There was a killer on the loose, and we could not afford to wait. Radiation treatment required Noah having a plastic cast made of his face. Can you imagine being 11 years old, with your head in a mask, bolted down to a machine, trapped, with a mouth guard to protect your tongue? It was so hard wheeling him over to this treatment and leaving him in this room, scared to death but bravely facing the only treatment options available.
They could not protect his eye; the tumor was too close to the optic nerve. The radiation effects would likely mean the sacrifice of his right eye, the bone on his face would be stunted and noticeably flatter as he grew, there was a possibility that he could go completely blind in the coming years, and of course there was the increased chance of other cancers. His right cornea became severely damaged from radiation and his face became painfully burned and raw. His esophagus was burnt, and he became feverish and unable to eat. A slew of other side effects and late effects could be expected from the chemotherapy.
He was hospitalized afterwards for a few weeks; this was the only time that he ever had TPN. During all his treatments, he never had a feeding tube. Through sheer force of will he made it through and would eat many healthy nutritious things each and every day. He was a fighter, and he never wanted to be treated as anything other than Noah. Cancer may have shaped his future, but it never defined him.
He endured grueling chemotherapy treatments and many blood transfusions and hospital stays. He developed a lifelong fear of blood as a result of the terrifying nose bleeds that he endured, and was traumatized by IV needles. Finally, in September 2012, he was finished with treatment. It was bittersweet as we could never be declared NED due to the fact that the irradiation of his tumor left ambiguous scan results. So began a wait and see approach.
Noah resumed playing hockey and jumped back into life. He had recurring bouts with cellulitis on his face over the next few months. It was terrifying. July 2013 Noah complained of some chest tightness, but x-rays revealed no change. We were relieved but unnerved. He was starting junior high, excited to be with his friends. He had managed to make straight A's in grade 6 after being in hospital for most of the year in grade 5, so we were understandably proud of his determination and zest for life. But life felt like a dangerous precipice, and one move could possibly tip the balance.
In August 2013, Noah's baseball team won the year end championship, and he was going through hockey tryouts before school started. He was having pains in his left side, which we attributed to muscle pain. One morning, the pain was so intense that Noah actually vomited. I knew my child, and this was serious, so I called the oncology department right away. During one of many tests, I felt a shiver of fear; I could tell there was a problem. I could hardly catch my breath when I was told Noah needed a chest x-ray. So we walked the familiar path down those halls to x-ray, and Noah bravely went in by himself. As I struggled for control, I looked up to see two of Noah's oncologists and nurses coming for me. They took me into an empty room and held me as I cried, well aware of the horror of our situation.
There were multiple tumors present in his lungs. The outlook for recurrent metastatic Ewing sarcoma is dismal, but we were not prepared to give up. With too many tumors to remove, we embarked upon surgery for a lung line to drain fluid. This was an extremely painful ordeal, and Noah endured many fevers. He started chemo immediately. He was so sick, feverish and weak, it was heartbreaking to see.
He regained his strength and was able to take his chemo outpatient, allowing him to sleep in his own bed. This made him so happy, and even though the side effects were extreme, when he was home something changed... he was able to eat. The comfort of his own family and home helped him through it. Our first scan came up. Miraculously, there was tumor shrinkage and no further spread! I was told in confidence that they had not scheduled future treatments, since they did not expect Noah to be doing so well. We were living one treatment at a time.
End of treatment arrived in June 2014. The scans revealed what appeared to be some tumor activity. We threw ourselves into that last summer. Noah played baseball, even though he could barely walk around the field at first without wheezing. But he never gave up, he wanted to experience all that he could, he inspired us all with his courage and fearless approach to life. By the end of the summer he was running bases and making a hit that clinched the running win in a baseball tournament! It felt surreal, like a movie. We all knew it was a magical moment in time.
The magic ended in August, 2014. We were told that this was the end of the line; all standard treatment options were exhausted. After one last, bittersweet family vacation, Noah started a drug trial of Temsirolimus on September 11, 2014. He had a cough at this time, but x-rays did not reveal any major concerns so we continued treatment. By Mid October, after only 5 treatments, breathing issues developed. I will never forget hearing my son ask his doctor if he was going to die, and sharing such soul crushing despair as he was told the cancer was too strong and yes, he would die. As I looked into Noah's tear stained eyes, and he held me and gently kissed me on the cheek, both our hearts were beyond shattered. There are no words to describe what it feels like to know that your child is going to die a merciless death and there is nothing you can do to stop it... and heaven help us, he knew it too.
He endured another chest tube, and was on oxygen by mid November. During this time he never lost hope, he even committed to a radical diet in a last ditch attempt to stall the cancer invading his body.
Noah Scott Llewellyn died at home on the morning of December 7, 2014, surrounded by his family. You can never know the pain of losing a beloved child to cancer, seeing them suffer. I don't know anyone who was stronger in mind, body and spirit. But in the end, it didn't matter... and ultimately, that's the scariest part of this cancer... it just doesn't matter. We all need to stop hoping for miracles and do what we can to create one... donate before it is too late for another child. Love you Noah.