Addison Laird 2001-2010

Very sadly, I must announce the death of my nine-year old son Addison, who succumbed to complications originating from a bone marrow transplant. He was a bright light and he is already missed by many. Thanks to all who helped and loved along the way.

Addison was diagnosed with leukemia (ALL variety, high risk) in spring of 2006, and like many families faced with childhood cancer, we were first rocked by the news. But we eventually learned how to live and thrive in the course of the three-and-a-half year treatment. Addison adventured, skied, climbed mountains, made new friends and generally defined himself as himself, not someone with sickness, or as a cancer patient occasionally sick with chemotherapy. Occasionally, I did writing and I eventually delivered on a 2005 book contract and produced The Price of a Bargain, which had just gone to final edits when Addison's leukemia relapsed in January 2009. I finished proofs and corrections in hospital prior to transplant, working late hours at bedside and in the hospital library. (When severe complications post-transplant persisted into the fall of 2009, much to the surprise of ourselves and our medical team, I dropped the newly-published book and much of its promotion, save for a brief two-week launch and tour period in October.)

I didn't blog on Addison's health in conjunction with my journalistic work, mostly to respect my little one's privacy and not make his illness a media thing. I think he didn't like attention as a sick person because there was much more to him than sickness. Turns out he touched a lot of people anyway. HH the Dalai Lama included Addison in his prayers, for example, as did my meditation teacher Achariya Doug Duncan (Japan), Addison's special friend Neten Rinpoche (Sera Mey monastery, India), as did the monks of Kopan Monastery (Nepal). Many others here and around the world offered love and support. The surprisingly large volume of letters, cards, and email that arrived after his passing were an overwhelming testament to the many people he affected in his short life. 

Inside the hospital, Addison was particularly revered for his composure and sweetness in the face of a series of hard-to-survive medical events, as well as his talent for drawing, Lego, and cooking. The Food Channel was his favourite television entertainment and Addison helped pioneer new ways to make vegetarian sushi, fried rice vermicelli, and grilled cheese in the confines of an isolation room. We improvised arts and crafts from unlikely nursing supplies, and when things got tough, we improvised new ways to deal with pain management, wound care, nutrition, and fear. Our hospital team did much to help, even when treatments and alternatives were not working. But I now know, in ways that are just becoming apparent, Addison himself did much to help everyone around him.

In medical terms, his case was complex and challenging. Addison's stem cell transplant occurred in May 2009 and, initially, things looked good. But his luck turned, as it sometimes does with transplant and oncology patients. Due to the extensive nature of some of his post-transplant complications, we gained extensive insight into transplant research and clinical practice -- which, in Addison's case, included onset and at least partial recovery from severe acute graft-versus-host disease (GVHD), severe venal-occlusive disease, kidney failure, treatment-related diabetes, cytomegalovirus, adenovirus, occasional seizures, hemorrhagic cystitis, as well as extensive chronic GVHD unsuccessfully treated with an experimental course of mesenchymal stem cells. Along the way, Addison's biopsy results were analyzed and discussed by pathologists at Seattle’s world-famous Fred Hutchinson Cancer Research Center, and his case was tabled at international conferences in Los Angeles and Vienna. 

Addison's amazing resilience, living nearly a full year at The Alberta Children's Hospital, suggested that he could recover. There was no sign of relapsed cancer; it was the the complex interaction of an uncooperative transplanted immune system, antiviral load, and several failing organ systems that were driving his decline. Up until about a half week before his death, we still had reason to hope that he might bounce back from his final set of neurological issues, part of a long series of medical events that kept us working in 24 hour shifts at the hospital for months on end. Nobody gave up, at least until it was clear that Addison's brain stem would not recover, and that his vital functions were in permanent decline. He was a tired little boy, one whose being was fully intact, but whose body was not going to hold up. 

As the sun set over the mountains outside his hospital room window on Wednesday, April 7th, 2010, Addison passed away peacefully in the loving arms of his Mom and Dad. He smiled at the very end, even though he wasn't conscious. Inexplicably, he also turned radiant yellow-gold upon passing, yet another reminder that there is much about our various journeys that we don't yet understand. 

"When you help save the life of a child, sooner or later one begins to wonder what kind of world they will inherit," I wrote in my book's acknowledgements, just as Addison was recovering from an earlier ICU stay in July 2009. "We can't always protect children from disease and misfortune, but we certainly can -- and must -- engineer better futures."

In lieu of flowers, donations are being directed to Jamie's Preschool, Calgary's kindergarten for cancer kids and their siblings that Addison and his friends attended, and where I now volunteer as a board member. Secure online donations can be made here.

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Here is what I read at Addison's Memorial Celebration on April 19, 2010 to a wonderful crowd of 300 people. I ran a slideshow in the background, so the text sometimes refers to photos from birth onward. No reproduction of this text without permission, please. 

Remembering Addison Laird

Thanks to everyone for coming, we appreciate all your love and support. We’d especially like to thank our family who did much to help us, as well as the staff of unit one at the Alberta Children’s Hospital who went way beyond standard of care in an attempt to make Addison better. Despite our loss, we are lucky to have had such good people in our lives.

Addison was a little boy who, even in the most difficult moments, was curious, bright, polite, considerate, and funny. There are many Addison stories that will be told today, reflective of all the different Addisons that we knew. For someone only nine years old, he certainly packed in a wide range of human experience. Lisa and I were there for his major moments, and we were hands-on from birth to death, and we believe that we participated in something amazing during the short arc of his life.

We have only just begun to process Addison’s loss and what he taught us, but we’d still like to share with you what we understand so far.

His death is challenging on several different levels. First, the loss of a child is always, in some way, experienced as a tragedy. I think there is something within our evolutionary code that responds to this with fear and grief, that it’s not OK, which is a natural response.

But it’s what we do with this response that matters, and it is precisely why we thought it best to celebrate Addison’s life, not simply mourn his passing.

We’re biased of course, but we believe that Addison was someone special. And that this became more obvious as he grew older and his challenges became bigger. Letting go of him is not just about letting go of future plans, aspirations for our family, and other things – it’s also about letting go of someone who changed us deeply, made us better parents, and likely better people.

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As most new parents discover with a baby, it’s the parents who do the learning, not vice-versa. Addison was no exception: we just followed his lead. He was a fun little dude.

In 2005, Addison’s original diagnosis for leukemia turned everything upside down for us. Here we had a perfect little boy, with a months-old baby brother, and we had to make him sick with chemotherapy for three and a half years in order to save his life.

But after treatment began, it became apparent that Addison wasn’t going to be a docile, housebound cancer patient. He was determined to be a kid, and he did so with playfulness and focus that often escapes adults who face critical illness.

For those who are familiar with childhood cancer, it’s not unusual to see kids doing much better than adults, mentally and physically. Addison and his friends from Jamie’s Preschool really exemplified this – in this regard, kids are really better than adults.

One important lesson we learned is this: Addison never identified with his cancer. Cancer was something that happened to him, it wasn’t him. Sickness wasn’t his identity and his days were generally not filled with worry and dread. He knew all about bad guy cells and how they are stupid and that they can take over bone marrow. But disease never defined who he was and what he was about, even in the midst of some very difficult transplant complications later on. It’s the kind of moment-to-moment awareness that many adults aspire to through years of yoga and meditation. It’s the kind of lesson some of us may never learn.

Last November, for example, Addison was in the midst of some very difficult issues and had been on morphine for several days. Hours before he was to go up to surgery to have a dialysis catheter placed in his abdomen, Jodi his hospital teacher dropped by and asked if he’d like to do some school, probably not expecting much response. Addison did in fact want to do school work, despite having been semi-conscious most of the morning and had good reason to be anxious about surgery.

Moreover, he wanted to do math. To me that was amazing, as I try to avoid math even on good days.

Relapse of cancer is hard: hard to describe and hard to revisit. Having to tell Addison that the bad guy cells were back again was a very sad moment. It meant that he would have to restart treatment, moreover a much more aggressive form of treatment. Luckily, we knew some great little kids that had been through stem cell transplant and survived. But we knew it was a hazardous path, one that was filled with uncertainty.

In May 2009, Addison received his transplant and named new immune system Steve, which was taken from umbilical cord blood. This gave him two significant strains of DNA operating in his body, something that would pose challenges later on. But he was fine with being two people in one. 

But right before treatment began, we went skiing. It was mid-January 2009 and Addison’s marrow was full of bad cells, but he still rocked the half pipe at Canada Olympic Park. Later that evening, he was admitted at the Alberta Children’s Hospital to begin treatment and conditioning for transplant.

Addison made the most of his time, especially when he was feeling well enough to do school or activities, and especially when he was able to be at home on pass or on discharge.

Addison was pretty much great about everything: having to undergo surgeries and treatments that made him feel unwell, tired, and uncomfortable. This is when our real medical education as parents began.

The truth is that there were very few major complications of transplant that Addison did not contract. He was something of a medical wonder, though, beating high-mortality complications on numerous occasions.

In the hospital, Addison was often praised for his composure and sweetness in the face of tricky medical events, as well as his talent for drawing, Lego, and cooking. He made Christmas gifts for his whole family last December, and he fussed over Valentine’s day cards for all his friends – and a special custom card for his mom. Often, his concern was for other people, especially his very tired parents.

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And yet Addison’s final months were still full of grace and light. We talked to him constantly during his last two weeks, knowing that on his last two days that he was lucid and awake, his little spirit was intact and that he had wanted to play, sing along to music and go home on pass, even though he wasn’t walking or eating much. But as he became sleepier and as days wore on with little indication of recovery, we gave him permission to go, knowing that he must be tired.

After two weeks of sleepiness, inability to talk and reduced motor function, Addison’s brain stem stopped working on the day of his death.

We had still nearly assumed that he would recover from his last set of challenges, given his amazing resilience. That was the kind of spirit and hope that Addison inspired in people. But recovery wasn’t going to happen: as though he was making his own plans to exit his body, his vitals gradually slowed down, and his breathing became less persistent. His whole being quieted down and it became clear that he was ready to go: it wasn’t a decision we had to make for him. He lead the way as he had in nearly everything else.

And as the sun set over the mountains outside his hospital room window on April 7th 8:50 pm, Addison passed away peacefully in the loving arms of his Mom and Dad. 

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People sometimes tell us what an amazing family we have been, living at hospital for nearly a year, caring for Addison at all hours, assuming medical and nursing duties, and investigating new therapies. That’s a very nice thing to say, but I don’t think that is entirely true. I’m not sure if we are all that special, as many people here would rise to the same challenge if they had to. Especially if it is a child. And we had lots of help.

What I think is worth mentioning though, if I can speculate, is that we ultimately found our energy to carry on not in fear, panic, or despair – although all of these things inevitably arise in these sorts of tough situations.

It was really love, and the deep well of energy and purpose that it opens up, that I think enabled us to try to do our best for Addison. The Buddhist tradition often speaks of great feats performed by yogis and masters rooted in boundless love for all beings.

I think that we perhaps caught a small glimpse of that kind of powerful force in what we faced at the Alberta Children’s Hospital this past year: that with enough love and clarity of purpose, obstacles and fears can be negotiated and even vanquished, and that this can make a person more useful to the people who truly need help. That’s what one can aspire to, anyway.

This really became critical in Addison’s final days when we needed to work past our grief -- and love him enough to ensure that his death was peaceful and filled with good energy.

The event of his passing was about him and his need to depart his body peacefully with light and awareness, not our wanting to cling to him and be miserable, which would have likely distracted him and caused him anguish.

That was our final lesson from Addison, one that continues: love may be infinite, but change still happens, and we have to be ready to let go of people and things with as much love as we once possessed them. 

We’d hope that everyone can go forward with their own insights from Addison’s life. Addison showed us that inspiration is everywhere, not just at hospitals. Time is short, do not delay.

Addison Laird 2001-2010