Engraftment

Image courtesy of Genetic Engineering & Biotechnology News - 2019

Today is Day +9 of Violet’s second stem cell transplant. In “BMT” language, that means we have gone through 4 days of high dose chemo, 3 days of rest, and are 9 days post-transplant (Day 0).

For the stem cell transplant to be successful, the cells must “engraft” in the marrow, becoming the foundation for new, healthy cells to grow. Each morning, Violet’s blood cell counts are tallied, including her red blood cells, white blood cells, platelets and neutrophils. By these numbers, doctors are able to make decisions about treatment each day, keeping her from death’s door as her body recovers from total decimation. Red blood cells contribute to energy and vitality, while platelets promote blood clotting and stop bleeding. White blood cells and neutrophils are part of the body’s immune system, making it possible to fight off disease and infection.

As of this morning, Violet has had 11 transfusions in the past nine days. Nine platelet infusions and two red blood cells. Her platelets won’t take, yet, so each day she gets about 240ml of milky yellow cells transfused into her blood stream through the Central Catheter Line in her chest. Last transplant, Violet’s low platelet count resulted in a bloody nose that didn’t stop for hours, several days in a row. This time we have managed to keep things at bay, likely because she has been using an oxygen mask to help her breathe. Her lungs have been “wet” - fluid building in the cells in her chest from the IV hydration given with each transfusion. It has been a balancing act, dancing between too much fluid and too much sodium from diuretics. We trade one close call for another, back and forth, all day long. The mask, serendipitously, has kept Violet’s fingernails from poking around in her nostrils, and potentially saving herself another scary trauma.

But today isn’t full of bad news. On the contrary, aside from the transfusion and the increase in hydromorphone to combat severe mouth pain from mucositis, Violet has shown improvement. Specially, her neutrophil counts have come in, meaning that the first signs of engraftment have begun. This process can take a bit of a toll, including fevers, body pain, and general malaise, but it is all for a good reason. Her body is fighting back, and hard, and a day earlier than expected.

Hope is a funny thing. It is available to all of us at all times, hanging in the air like an invisible fruit that can be plucked at will. It does not require anything material, and in actuality it performs more of a significant role in our lives when it isn’t dependent upon evidence that we can see. Faith is hope that relies on a belief that things are working out no matter what the world may be showing us in any given moment. It is a deep knowing that we are ok at some fundamental level – that things are always improving, always expanding and evolving, always essentially working in our favour. It is a conviction that the world is good, and that if we get out of our own way, we allow the good in.

I have commented lately on political topics that I have avoided for months, simply out of necessity. But in having to consider these topics, I have come to understand how deep my faith runs these days.

As an update to those concerned, our family has now moved out of the Ronald McDonald House. It was the right decision, for me, because it was the only one that felt right. RMH changed their protocols and we weren’t prepared to make significant decisions simply to placate these changes. It wasn’t a political act of defiance. It wasn’t to prove a point, and it wasn’t because I am against anything specifically. It was because I wasn’t ready to make this decision yet, and staying at RMH wasn’t a good enough reason to rush it.

And they were very gracious about the whole thing. We formed fabulous relationships with the staff and the entire organization, and despite the unfortunate timing and circumstances to our departure, we left with full hearts and true appreciation for the entire experience at the House.

There’s a lot going on “out there” right now. I contemplate this, once again, from my 100 square foot hospital room, looking down on a world I can’t touch. I am in awe of it, but also removed from it enough to have a relatively unimpassioned view. That is not to say I don’t care, or that I don’t have opinions about what is going on. But in here I don’t have to defend those opinions, or feel that I have to “stick” to them one way or another. I can let my mind and heart move fluidly through the landscape of this health and political crises, tuning in to a more flexible, open approach.

It’s a luxury, in a way. When I’m around other people, they demand to know where I “stand”. Everyone is demanding that of one another these days.

But again, I have come back to one sticking point. I want the world to pursue love. It is, or should be, at the heart of what everyone is fighting for. Freedom is calling out to all of us. We don’t want to be controlled any more. We want freedom to live our lives, even if we don’t all have the same perspective as to how to accomplish that.

The Trucker Freedom Rally going on today represents something different to everyone – everyone that is paying attention. And I can empathize with it all. But to me, what resonates most is an energy of hope. I don’t believe in pushing against things. I don’t think it gets anyone anywhere. When you are in an argument with anyone, the opposing side immediately goes on the defense when they feel threatened, no matter what logical arguments are being made.

In order to affect change, we must promote something. We must fight for something, not against. Sticking up a middle finger to someone on the highway feels good for a second, but the other guy just thinks you are an asshole. He doesn’t see the finger and question his own driving proficiencies.

I see this rally as a coming together of people that want to promote freedom (at least, for the most part). Who want to promote a new world that is more open and accepting and kind. It isn’t about a vaccine anymore. Half the people in that convoy probably are vaccinated. It’s not the point, or shouldn’t be. For me, there is nothing wrong about promoting health measures or encouraging responsibility toward the common good. But the balance has been thrown off for a long time, and the tide needs to shift. There are millions of people around the world that are no longer willing to live in fear. We all just want to breathe again, metaphorically and literally.

If there is any wisdom I have learned in here, it is that getting “stuck” is the foundation of suffering. When we are not able to be present, to let the subtleties of the moment and the constantly changing tide of life flow through us like water, we feel that ache within. It is resistance. Resistance allows us to form opinions, care about this thing more than that thing, create context and color in our lives. But if we get too stuck, we sink into places of suffering – internal hells that we create for ourselves.

Violet is on her second transplant, and I have a million reasons to sink into fear. I have compared each second of this to the first, remembering each previous horror and anticipating the worst. But the truth is that this transplant, this day, this moment, is unique, and full of possibility. I need to lean in to the positive – what we are fighting for, not against. Healing. Strength. Renewal.

Violet’s fever is momentum in a positive direction. It is evidence of change. So, too, is this rally. The tides are changing. There’s no reason not to lean in to optimistic expectation.

I am proud of every Canadian that has fought for our freedoms. I am also proud of each individual that has taken action to protect the health of those around them in the best way they know how. We all need to lean in to what we want to promote, not destroy. Today, I am proud to live in a country that is, at least in part, looking ahead with hope, promoting equitable discourse, and open to change.

We are not cancer fighters in this room. We are healers. We are warriors of health. We are not survivors, we are thrivers. And we have all the Faith that the heart can muster while the body, and the country, goes through this process of engraftment.