Where is this going?

We are in a strange sort of liminal space where something is very wrong, but it isn’t clear what is causing it or how to fix it. It is not getting better, but it isn’t getting worse either. We’re in suspended animation.

What initially felt like the scariest parts of this week seem to have resolved (no more sign of blood in Michael’s lungs) or are being supported through interventions or medication (the basement floor location of Michael’s blood pressure, the sky-high fever). But Michael remains in the Intensive Care Unit (ICU) and is still on supportive oxygen because without it, his blood oxygenation level plummets to levels which can damage other systems in his body. His kidneys are angry about something and lung imaging shows there is something happening in there which shouldn’t be.

The current course of treatment has been to throw everything at it, then to narrow it down as test results come in. While not much about Michael is changing, the possibilities of what may be causing this change all the time. There’s been a pivot about every other day.

Currently, there is a frightening possibility this may be a new manifestation of Graft Vs Host Disease, Pulmonary GVHD.

Quick refresher: In a transplant, the Graft is the donor stem cells (from our youngest son Benjamin) which are put into the Host, Michael. Those new cells retain part of the donor’s immune system, and they do what healthy cells are supposed to do: attack foreign invaders. Unfortunately, the new cells sometimes recognize the Host as the foreign invader and begin to attack several of the systems within the body, causing rampant inflammation. Graft and Host must be tricked into playing nice with one another through many types of immunosuppressive medications and treatments.

Michael, with his rare and unique form of cancer and gene mutation, seems to be going the extra mile in trying to check every box when it comes to possible complications. There are two types of GVHD, Acute and Chronic. Much like the types of Leukemia, Acute comes on quick and strong, generally within 100 days of the transplant, and Chronic develops over time and may stick with you in the long term. Both can cause permanent damage ranging from mild to catastrophic. 

For Acute GVHD, the three main systems affected are the skin, the liver, and the gastrointestinal tract. While Michael was still in the hospital following the transplant, he had Acute GVHD which hit all three systems, all at once. On a graded scale of 0 to 4 of how serious it was, he was a 3 — severe. Patients with a grade of 3 or 4 generally have bad outcomes, especially if it can’t be brought under control quickly. This was the point we added in a medication which isn’t covered under the Hong Kong Government Health Subsidy. It costs a dizzying amount of money, especially when added on top of the other expensive medication Michael takes to keep the gene mutation (Philadelphia Chromosome) under control. The good news is it works, really well, when he takes the maximum dose.

Michael’s liver was the first to return to normal, followed by his skin. Digestive issues persisted for quite some time, really only resolving following the surgery to remove his gallbladder. Because we’re now outside the first 100 days following the transplant, things begin to shift from Acute GVHD to the possibility of Chronic GVHD.

A few additional systems can be affected by Chronic GVHD. One are eye problems, including cataracts and vision changes. Michael wears dark glasses anytime he’s outdoors during the day to try and reduce or slow this possibility. Another system which may get the Graft and Host fighting is the lungs. The Pulmonary (lung) GVHD, as described to us back in that horrific nightmare of a first meeting with the transplant team at Queen Mary Hospital, is a vicious kind of progressive lung damage which cannot be reversed.

One week ago today when we heard Michael had pneumonia and was going to be moved to the ICU and possibly intubated, we were so certain that was one of the most frightening things that could happen. With no immune system, Michael has no way to fight off such a massive infection so swift and aggressive treatments were necessary. Everything they threw at him seems to have worked to a degree, because as I mentioned right at the beginning, while he’s not getting better, he is certainly not getting any worse. But now that time is passing and the samples they have taken to grow in a petri dish to see what they are dealing with are coming back with no clear answers, there is certainly a shift to the possibility that what they saw in that earlier CT scan with contrast may not have been pneumonia at all, but lungs filled with damage from Pulmonary Graft Vs Host Disease.

I said in my last post that ignorance is bliss, what you don’t know can’t give you nightmares. If this isn’t pneumonia, and it is this other thing, it isn’t good news. The last couple of days they’ve tried to get samples of the final thing they can test in a non-invasive way to check for the source of infection. The next step (with no timeline for when it will happen other than “next week”) will be an invasive bronchoscopy with lung biopsy, which carries a lot of risks for Michael in his current oxygen-dependent state. That can tell us with more accuracy if my unicorn of a unique husband has decided to once again gift us with something incredibly rare and unusual. They are already treating him for it, just in case, even as we beg God for it to not be this.

If it is Pulmonary Graft Vs Host Disease, this will affect our future in every imaginable way. We have been privately grappling a bit with what it would mean and praying to remain strong in the face of a whole new unwanted situation. People have been texting and messaging, asking for updates or just patiently waiting, but at this very moment, before we know what we don’t yet know, I am unsure of what to say.

Yesterday I spoke at length to the pulmonologist who will be on Michael’s case beginning Monday. After looking at everything, he is still hopeful that the cause of Michael’s pulmonary failure is some sort of microbe which they simply haven’t yet been able to effectively sample. Thus the recommendation to finally move to the next step and have the riskier, invasive bronchoscopy next week (again, day to be determined). They’ll be able to biopsy his trachea and lungs while also grabbing some samples of the fluid still hanging out in those lower lobes of his. If there is something to be found, this is the way to find it and then treat it. It’s diagnosis by process of elimination. They can’t keep throwing every form of possible treatment at Michael for the long term, as it will be less and less effective as time passes.

So what can I tell you?

Michael is beginning to experience some pain, in his lungs of course, but also from the shingles nerve pain in his arm and hand flaring back up. They think part of the reason his kidneys are so angry has to do with the gloriously helpful nerve pain medication. As they lower the dose to help his kidneys, the pain in his arm and hand rises. Not a fan.

I can tell you that every other day they were gradually reducing the amount of oxygen he was getting to see how he tolerated it. Two days ago they hit 50%, which turned out to be as low as they could go before his body couldn’t pick up the slack to keep that blood oxygenation level above 90%. They tossed around the phrase pulmonary failure so often and so casually I cried in the taxi on the way home, once again in shock and sorrow over this situation.

I can tell you he is sick of the hospital food, he’s tired of the constant round-the-clock monitoring that keeps him from getting long periods of deep, uninterrupted sleep. I can tell you that pain, lack of rest, and the low hum of frightening possibilities have made it challenging for Michael to remain strong and courageous. Every new thing this year has been a level up in difficulty, and this one truly beats all the rest.

I can tell you the dark blonde hair that continues to grow out of his formerly white-haired head and face delights and surprises us more and more every day, and that his beard and mustache are bothering him with the oxygen tubes and mask covering them. A nurse today told him he should just embrace the “Asian way” and shave everything off his face, but having spent most of this year completely hairless, we all love his shockingly thick beard and mustache.

I can tell you Michael is surround on all sides by death and dying in the ICU, but he is mercifully protected from seeing the precious families in the hallway weeping and holding on to one another in the aftermath of the profound loss of their loved one. I can tell you I have no such protection from that view, and the heaviness of our own situation coupled with the heaviness of everyone else surrounding us is difficult to bear. I’ve been writing a post for some time about how much death has been a part of our life this year — it’s important to talk about but draining considering how never ending it is.

I can tell you about the many other things falling down around us, like our washing machine going belly up for good this week after a year of us trying to keep everything extra clean for Michael’s health, and juggling trips to the laundromat on top of everything else.

I can also tell you about how I sent a text to a friend while I was standing in my kitchen crying, saying I really needed help with food preparation. And how now every day around dinner time a different person from our community drops off something delicious for the boys and I to eat. I can tell you when we stumble in the door each evening, weary with fatigue and worry, there is no need for us to further dirty our increasingly messy kitchen to try and fix something to nourish our tired bodies. I can tell you that this is what love looks like to me, how I show my love, feeding someone well. I will forever be in awe that people, some of them complete strangers, will go to this length to help in this way. What a sacred gift.

The day Michael’s cancer first gave us a little foreshadowing action we were in Mainz, Germany, almost a year ago.

We were visiting my friend Carolyne and her husband Chandler, an early stop on a nearly three week dream trip through the Christmas markets of Europe. Carolyne took us on an epic walk through her adopted town, which invigorated me as I talked a mile a minute with my long time friend, but depleted Michael so completely he fell asleep on her couch mid-conversation. On our long walk, we saw the Theodor Heuss Bridge spanning the Rhine River, under a clear and crisp blue winter sky. I was familiar with it thanks to Carolyne’s Instagram stories of her daily walks with her precious (and much missed) dog, Merlot.

I love bridges, perhaps because we live on an island in a city with 250+ other islands and cross one or more bridges every single day. But also because I’m a sucker for finding a deeper meaning in everything, and a bridge, if it works as designed, represents safe passage from one place to another. A connection between things or people. The Theodor Heuss Bridge is old and beautiful and now when Carolyne posts photos of it on her daily walk with her new pup Mini, I think about how I got to see it in real life, how I walked along the river with Carolyne and Michael and took my own photo of it in the distance.

About ten days ago, Carolyne posted the photo at the top of this post on her Instagram stories and it brought out so many unexpected feelings. It felt like a visual representation of my life right then, dark and moody, the distance hazy, the destination unclear. I actually asked her to send me the photo so I could print it, which she kindly did. In the days since, I have looked at it frequently. Especially in the last couple of days when we are being violently rocked with uncertainty and terrifying possibilities.

In the photo the bridge is solidly standing there, ready to take people across the river. But what awaits on the other side, or even just the halfway point, is unseen. There might be the starting point of an amazing adventure across Germany and Europe and the rest of the world. There might be a terrible accident about to happen which will cause massive damage to a line of cars, their occupants, and even the pedestrians crossing on foot. There might be nothing dramatic at all, just a boring commute through the fog to a mundane appointment which will quickly be forgotten. From this side of the river it’s impossible to see what awaits. Personally, I hope and long for the possibility of adventure. In our present situation I’ll even gladly take boring and mundane. But believe me when I say every single day I’m praying so hard against the possibility of carnage, in the way someone who has experienced nearly a full year surrounded by death and dying will tend to do.

My oldest son celebrated his 25th birthday this week with his first trip to the ICU to see his dad, who was having a particularly difficult day.

I found myself trying to make it less scary for my son, to try and keep his focus on silly, inconsequential things instead of the truth laying front and center in a high-tech hospital bed. It was exhausting. I was struck by a realization that even though this is terrifying and brutal, extremely raw and painful, I do not want to hurry this time away. There is beauty to be found even here in the darkness and it would be a disservice to ourselves to not observe it.

In the photo Carolyne originally posted on her Instagram story, I didn’t notice how flying through the mist above the bridge are a couple of birds, details which make the haunting image even more interesting. I only saw them when she sent me the photo and I took the time to really look. Just like it is only in pausing to really look back at that memorable day in Mainz, by that bridge when Michael struggled to catch his breath and keep up, that it was the start of something which has already completely changed every part of our life. We weren’t still standing on the side of the river, enjoying the view, we were already on this figurative bridge, leaving one known and familiar place and heading somewhere still hazy and unclear.

Thank you, wherever you are geographically, for being right here on this figurative bridge with us. For walking us across despite the many perils which we’ve already experienced together, and for sticking with and supporting us even though we don’t know what may await us in the foggy, hazy distance. It takes quite a bit of courage to join a story while it’s still unfolding, to not look away, to root for us even though the hits keep coming, to pray boldly for our family even when it frequently feels like very little is moving in our favor. Michael is still here with us, and that is no small thing. From me, from my boys, from my beloved: Thank you, thank you, thank you.

I am stubbornly hopeful and believing with all my strength that week two in the ICU will bring health, strength, and healing for Michael, plus eyes for myself to see the awe and wonder and beauty surrounding us even here and now in this perilous and frightening circumstance. I hope you can see it too.

More soon.

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