Nineteen: 19 Insights Learned from a 19-year-old with Cancer

19 Insights Learned from a 19-Year-Old with Cancer

Nineteen

Adam J. T. Robarts

with Karen Malmqvist and Lou Aronica

PRAISE FOR NINETEEN

This father’s powerful testimonial to his son captures both the pain of loss and the joys of life. It invites us to pause in this hectic world, to appreciate it and those around us. It is not a story of despair but that of love. These thought-provoking pages will act as a source of strength for those who knew Haydn Robarts and those that did not. Through his work, Adam Robarts has offered others the chance to know the man I was lucky enough to call my friend.

—Chris George, Haydn’s school friend

This book, like the life of the one it tells, is full of deep wisdom and insight. Adam Robarts has given all who have the privilege of reading it a priceless gift: out of personal pain and heartbreaking loss, he has brought forth a message of triumph and transcendence. With him, we stand in awe of the life of nineteen-year-old Haydn Robarts, who speaks to our hearts, Grieve not for me for I have indeed reached the summit, and the view from eternity is glorious.’ "

—Tarrant Mahony, Haydn’s neighbor and Temple University professor of law at Tsinghua University, Beijing

This story is powerful in its powerlessness, graceful in its humility, and uplifting in its heartbreak. It breathes like a memoir or a self-help book, but this is really a love story. It is through this love that lessons are learned and a light emerges to guide us on our own spiritual path.

—Karyn Robarts, Haydn’s mother

Haydn with parents Karyn and Adam Robarts, New York; January 2020. Photo courtesy of Pan Shiyi

This book is dedicated to Haydn’s siblings: Tallis, Sian, and Keyan.

May Haydn always inspire you to live your lives as he would wish, for the betterment of the world, with hearts filled with joy, and consciously bringing joy to others.

To my parents and grandparents

CONTENTS

mapping the mountain

1. HAYDN’S PATH

preparation to climb

2. ACCEPTANCE

You get what you get, and you don’t get upset.

3. AUTHENTICITY

I am who I am, and it is good enough.

4. POSITIVITY

Cause health!

base camp

5. HOPE

Where there’s life, there’s hope.

6. FAITH

Conscious knowledge expressed in action.

7. PRAYER

One hour’s reflection is preferable to seventy years of pious worship.

high camp

8. NATURE

Think of yourself as a river.

9. DREAMS

Maps from the mountain.

10. FEAR

Danger is real, but fear is a choice.

approaching the summit

11. DETACHMENT

You are not your body!

12. CALM

Be courageous. And don’t do normous!

13. HAPPINESS

Don’t cry because it’s over; smile because it happened.

the summit

14. SELFLESSNESS

Take the ‘self’ out of ‘self-help’!

15. MINDFULNESS

Take the ‘self’ out of ‘self-help’!

16. TRUST

We have each been entrusted to a family, who will one day return that Trust.

reflections on descent

17. TIME

Never miss your moment!

18. ACCOMPANIMENT

Mutual aid and reciprocity.

19. AFTERWORD

Acknowledgments

About the Authors

Notes

NINETEEN

mapping the mountain

1.

HAYDN’S PATH

THREE AND A HALF YEARS before this story began, Haydn and I made a three-day trip from our Beijing home to Wellington College in the UK. Haydn had been invited to sit for the entrance exam for Wellington’s sixth form, equivalent to an American twelfth grade, where four hundred applicants vied for forty places. Jet-lagged but excited, we stood waiting in the school reception hall with the other candidates and their parents. Smiles and small talk disguised the nervousness among us before our fifteen-year-olds were led off to their first exam of the day: mathematics. As they parted, a Russian boy standing within earshot spoke quietly to his father, checking off his exam tools: pen, pencil, geometry set, calculator. Haydn turned to me and calmly said, Dad, I didn’t bring my calculator. My heart skipped a beat. Just as instantly, and true to form, Haydn assured me with his characteristic calm, Don’t worry. It’ll be okay. Without hesitation, Haydn chose grace in the face of challenge.

In mid-July 2019, then nineteen-year-old Haydn, my always hale son, started experiencing headaches, blurred vision, and some nausea. He didn’t look sick at all, however. He was in Toronto, having just finished his gap year in China and Chile, following sixth form at Wellington. A few weeks later, he was due to start studying architecture at University College London with a focus on sustainable architecture. Here stood a young man at the trailhead of his future, dreams and exciting plans intact, the course laid out. But the physical anomalies he was experiencing demanded attention.

At the advice of my brother, an ER doctor, Haydn went in for an MRI, just to be safe. That August 1, I was in Singapore in a hotel room with my wife, Karyn, and our youngest son, Keyan. We were preparing to fly to our new home in Bali later that afternoon. Keyan was excited to begin his schooling near Ubud. So, there we stood, also poised at the trailhead of a new journey. This was an exciting beginning for us, and we were positive and optimistic about everything that awaited us on the Island of the Gods.

Then the phone rang.

My brother broke the news to us: Haydn’s MRI showed a tumor four centimeters in diameter beside the pituitary gland, at the base of the brain. He needed emergency surgery as he was already losing his eyesight and hearing, and his speech had begun to slur.

I was confused and shocked. When I’d last seen Haydn, only three weeks earlier, he appeared in fine health, perhaps in better shape than ever before.

In that drop-to-your-knees moment, our world seemed to crumble around us and within us. Karyn and I held each other and just wept and wept… and wept. Disoriented, stunned, and scared, we suddenly stood at a new trailhead, the destination and the routes completely unknown. We quickly gathered our wits, booked tickets, and flew to Toronto on the next flight.

One of the ego’s many erroneous assumptions, one of its many deluded thoughts is, I should not have to suffer. Sometimes the thought gets transferred to someone close to you: My child should not have to suffer. That thought itself lies at the root of suffering.… The truth is that you need to say yes to suffering before you can transcend it.

—ECKHART TOLLE, A New Earth

Haydn’s cancer treatments in Toronto consisted of two brain surgeries followed by twelve weeks of chemotherapy and a subsequent eight weeks of radiation treatments. At the time of his diagnosis, Haydn’s bloodwork showed that his alpha-fetoprotein (AFP), one of several tumor markers, was extremely elevated. The normal range for AFP is less than 3 ng/mL (nanograms per milliliter), and Haydn’s AFP was at 8,500 ng/mL when he started chemotherapy. Twelve weeks later, at the end of chemo, it was down to 25 ng/mL. At the same time, the high-resolution brain scans showed that Haydn’s brain tumor had reduced from four centimeters to seven millimeters in diameter. A reduction in diameter by a factor of six translates to a reduction in volume by almost 200 times. We were all elated! With thirty-three sessions of radiation still to come, it seemed we had wind in our sails, and were set to enter remission at the end of this journey. The year 2020 was looking to be a good one.

If all went according to plan, Haydn’s last radiation treatment would be January 6, 2020, and we would mark it as the summit of his journey through cancer. We envisioned this to be a brief detour before returning to a normal, healthy life. However, on January 7, Haydn’s blood work showed his AFP level at 1151 ng/mL. Something wasn’t right. The oncologists were clearly concerned and wanted to first verify that this was not a mistake. They booked additional blood work as well as high resolution MRI scans of Haydn’s head and spine. Three days later, we met with the oncologists for the verdict: Haydn’s cancer had spread from his brain to his spine and was resistant to the treatment. This was a rare and aggressive form of cancer, and the odds of a cure were not hopeful. The doctors determined that Haydn’s condition had progressed too far, and since he’d been unresponsive to treatment, they concluded that no further treatment was viable.

In a small clinic room at the Princess Margaret Hospital on that ominous day, Haydn was told that he should just try to make the most of his remaining time in this earthly life, likely only a few months. The doctors were apologetic, sensitive, and professional. They informed Haydn that they would refer a palliative care team that would be able to support him through this final phase.

In that moment, Haydn was calm and collected. A few tears trickled down his cheeks as he processed the news. He straightened himself and thanked the doctors, genuinely, for he knew they had done their best. He asked what he could and couldn’t do. Could he travel? Or skydive?! I sat deeply saddened and, frankly, numb. There were no tears or outbursts of disbelief or anger or guilt. I believed we did everything we could to prevent this outcome, yet that didn’t make this news any less awful. Haydn then turned to Karyn, who had to lie down to manage the shock, as it left her physically breathless and faint. He gently put his hand on her shoulder and ever so lovingly assured her that all would be fine. When Haydn spoke, a gentle certitude filled the room. The simple sincerity of his words lifted us all.

Nothing I had ever read or learned or achieved adequately prepared me for this heartrending reality. While I try not to go back to this particular moment, Karyn has called upon it many times. She describes it as her proudest as a mother: when she witnessed the culmination of a character Haydn cultivated during his nineteen years that enabled him to accept his fate with such grace and gratitude. We know in our hearts that this journey revealed Haydn’s depth of character, his fortitude, and a level of faith that I can describe only in words like profound, inspiring… heroic.

When we returned to the apartment after that momentous meeting with the doctors, Haydn wrote this personal message to family and friends:

Dear All,

I want to thank everyone in this email chain for being with me in spirit over the course of this journey. Your responses and just knowing that so many people are taking an interest in my well-being has been incredible!

The next few months will no doubt be difficult for me, and while I would appreciate any prayers for a miracle, I also ask that, if I am to meet a premature end, that you don’t feel bad for me or my family, for everything happens for a reason.

I have lived an incredible life! Surrounded by constant love, support, and opportunities! It is a life I am extremely grateful for, and I couldn’t have asked for a more supporting and loving family/group of friends to have around me!

boundless love,

Haydn

From the time of Haydn’s diagnosis, I felt drawn to the metaphor of mountain climbing. During this climb, it seemed my relationship with Haydn shifted from being that of a father accompanying his son to more of a companion accompanying a young mountaineer scaling a formidable mountain. The grand teacher that is Mother Nature can redirect even the most well-equipped and well-trained climb team. When a storm suddenly moves in, questions immediately arise. Do conditions provide for a slight delay? If so, we look for a new window of opportunity to push to the top. Or is it best to surrender and call off the approach? Do we accept that this summit attempt was not meant to be?

For Haydn, giving up was not an option. At the same time, he was not one to force a situation, to push through a plan that was not viable. Haydn had the ability to bend, to flex, to give in rather than to give up. He believed that if God wanted him to make it through an illness, then there was a reason for his suffering, and he would channel that struggle into a purpose. And if God willed it that it was time for him to move on from this world, then Haydn also believed that he had a purpose in the next world for this exact time. Although he loved life, he had no fear of death. He accepted that there was a greater power at work in his life, whether one chooses to call it the Will of God, the Invisible Hand, fate, or destiny. Haydn often repeated the words of the thirteenth-century Persian poet Sa’di, quoted by Bahá’u’lláh in Crisis and Victory, to explain the operation of God’s immutable Will and the effect on those who accept it:

Even or odd, thou shalt win the wager.

In the coming days, we sent out an SOS to all those we knew who might be able to introduce a lifeline. Were there any other possible routes, or teams? We researched proton beam therapy, biological treatments, and high-dose chemotherapy with stem cell rescue. We cast out a line to hospitals and pioneering centers in the UK, the US, Germany, South Korea, and China. If this was the end of the path, we wanted to be sure we had left no stone unturned. Even if the chances of success were slim, we never gave up hoping, believing, trusting. Miracles do happen, even in science. In fact, most scientific breakthroughs are described as miraculous by hard-nosed scientists who simply put their faith into being open to the miraculous.

Three days later, we were in communication with two leading cancer centers in the US, both in New York. Each were involved in a clinical trial for recurrent malignant tumors, including recurrent mixed germ-cell tumors. Haydn’s case was presented at the tumor board meeting on Wednesday, January 15, 2020. Later that day, we were informed that an expert team at NYU was willing to take Haydn as a patient and would use high-dose chemotherapy with stem-cell rescue. The risks were evident, and there was no guarantee of success, but even though the odds were very low, Haydn was ready to give this climb everything he had. As he remarked one evening, even if there was a 1% chance of survival, that was 1% more than the option of giving up.

On January 17, exactly one week after being told the climb was over, we sat in Dr. Nicolaides’ clinic in New York planning the schedule for Haydn’s treatment. The conversation was surreal, yet very real. In less than six months, this was our second time round, in a second city, with a second set of doctors, looking at another cancer treatment plan. There was hope, but mine was now tempered given our previous experiences. I felt humbled and helpless by how little I could do medically for Haydn. Being conscious of my powerlessness, I was more mindful of everything else going on—the place, the people, the words spoken, my thoughts, my breathing… and, of course, the presence of Haydn. Somehow, he remained at ease, able to take it all in without being overwhelmed.

This plan involved an initial four rounds of chemotherapy, each lasting two weeks and involving different medications than those used in Toronto. If the cancer was responsive to this treatment, Haydn would move onto a course of myeloablative (literally destroying the bone marrow) chemotherapy.

Stem-cell rescue entailed two phases, the first being to harvest the stem cells by extracting Haydn’s blood from veins in his neck, running this through a centrifuge that would spin the blood to extract the stem cells, and then returning the blood to Haydn’s body. Once Haydn’s stem cells had been stored and frozen, the second phase would be to transplant the stem cells back into his body a couple of weeks later, after the myeloablative chemotherapy and the resulting depletion of all of Haydn’s neutrophils and white blood cells. With the fresh stem cells starting a few days later to create new neutrophils and white blood cells, hopefully this would prompt a fresh start and a trail toward becoming cancer free. The procedure required precision timing and exactitude in handling, not least because Haydn would be highly immune compromised, with no defense against even the most minor of infections.

Haydn’s first chemotherapy at NYU began on January 25; he was full of gratitude and hope as expressed in an email:

Thank you so much for your support, prayers, and beautiful replies to my dad’s updates! I can’t express how much it means to have such a wonderful support system in addition to my family and the incredibly capable team of doctors here!

I’m feeling as well as can be expected and just incredibly grateful to have been given this treatment opportunity and for this glimmer of hope! I’m ready to fight