Please Breathe

Wednesday Michael saw the Infectious Disease doctor who adjusted the dose of his nerve pain medications which finally started to give him some relief (from an intermittent level 9-10 down to a constant level 2-3).

Thursday we had a long hospital day at Queen Mary Hospital. Michael had his weekly comprehensive blood test, then we met with the dietician to see if we can add in any additional foods or reduce the restrictions (answer: no), and finally we got to see the transplant doctor. His magnesium and potassium were low so an infusion was ordered, prolonging the already extended day even more. He seems to be having more Graft vs Host Disease issues, so she opted to increase the medication that we pay a hefty sum for, just two weeks after she lowered the dose.

All day Michael was shaky, taking quick, shallow breaths. I mentioned that he should probably take a puff on his inhaler, but he said he wasn’t wheezing. It didn’t feel right to me, and by the time we turned out the light to go to sleep, he was very groggy and out of it. His temperature was a bit elevated so I knew we would be heading back to the hospital again soon.

Friday (today), I had a hard time getting Michael to wake up. When we took his temperature again, it was well over the threshold to head to the emergency room. He was incredibly weak, his whole body was shaking. His breathing was even more shallow than before and he was practically panting. His Apple Watch kept warning him that his heart was racing. We pulled out the hospital go-bag and left after he had some instant oatmeal.

He slept the whole taxi ride to Princess Margaret Hospital, which I chose because it’s closer than Queen Mary. It’s where Michael started his journey with Leukemia last December and where he recently had his gallbladder removed. By the time we got there, he could barely walk. An orderly zipped right up with a wheelchair (bless him), they took us to triage directly from the registration counter, then brought a gurney which whisked him off immediately. They did a chest x-ray and an EKG and then told us they’d be admitting him. We didn’t get to talk to the doctor at that point, but I walked alongside him as they brought him back to the Hematology Ward which we are so familiar with. Visiting hour was over, so I left to meet my older son for an unrelated medical appointment.

While I was gone, the doctor came to tell Michael that he has pneumonia in his left lung.

He went over all of Michael’s movements for the last week to see where he might have picked up any kind of bug, but the only place Michael has been is our home and Queen Mary Hospital. The rest of us have no respiratory issues right now and stick faithfully to best practices to reduce the risk of getting sick putting Michael at risk. So frustrating to do everything right, exactly as directed, and still Michael ends up seriously ill. We can only do our best with what we have control over, which ultimately isn’t very much.

By the time I got back to Princess Margaret for evening visiting hour, Michael’s fever had soared higher than I’ve ever seen. He was on an oxygen cannula and his pulse was racing while his blood oxygenation level was scary low, dipping constantly into the 80’s and even down into the 70’s a few times. I held his hand and prayed over him, slipping out a few minutes before the end of the visiting hour so I could go home and eat something.

Somehow on the way home I got on the wrong train, on the wrong line, to the wrong destination. I have a keen sense of direction and honestly this never happens. In decades of taking public transit, I can say the last time I got on the wrong train was all the way back in 2001 when my in laws came to visit their new baby grandson in Tokyo and I accidentally got us all on an express heading non-stop to the next prefecture, a mistake that ate up hours of time. Tonight my brain was not working at all. When I finally realized I was not in the right place and recognized nothing at all, I backtracked and then shockingly overshot the station I needed. I actually ended up right back at the hospital MTR station. A one hour journey going in a big circle, no closer to home, just right back to my beloved. My brain may not have been working, but my heart knew what it wanted most.

When I finally made it in the door, Michael texted me to say Dr. Wu was going to give me a call. She was the first doctor we met at Princess Margaret hospital, last year on my birthday when our world turned upside down. She was the one who told us Michael definitely had a form of acute leukemia, but it looked like he also might have the Mixed Phenotype Acute Leukemia, a rare and aggressive cancer. She was the first person to mention the Philadelphia Chromosome to us, offering her hope that he did not have that cell mutation, which ultimately of course, he did. I immediately texted Michael back, to ask why she was going to call me, and he said, “To discuss worst case scenario.” The floor opened up beneath me.

Moments later she called and told me the pneumonia was progressing rapidly, despite them throwing everything they have at it. He went from an oxygen cannula to a full face mask with 100% oxygen. She wanted to tell me Michael stated his desire for them to try everything possible to save his life, and that they will do so. She also said that his immune system is extremely weak, so it may not be possible for him to fight this off. Because they are already giving him the maximum antibiotics and immunoglobulin to fill in the gap for his missing immune system, what he really needs is time to let these things fight off the pneumonia. And unfortunately, because the pneumonia is moving faster than the drugs to stop it, time is in short supply.

Dr. Wu said if he begins to struggle more with his breathing, they will intubate him, sending him to the ICU. This means a machine will do the breathing for him while they put him under deep sedation, giving him time he may not have otherwise. She described it as buying time. It may take several days to several weeks, but they will do everything they can. She asked if I understood about what they were going to do and if I had any questions. I did not. At the end of her life, my Mama was intubated. At the start of his life, my son Benjamin was intubated. I am quite familiar with it.

I grabbed my sons to shakily tell them the news then updated Michael’s siblings and parents in America. The boys and I FaceTimed Michael, watching as nurses and doctors rushed around his bed adjusting the oxygen and the face mask. He kept trying to talk to us, to tell us he loves us and that he’s going to be okay. The nurse told him to stop talking, so we just filled a few more minutes telling him to fight this, stay with us, do whatever they tell you to do, be strong and courageous, and that we love him so much. Finally we had to hang up as there was so much activity happening.

I popped a short note onto Facebook and Instagram, pleading for prayers for Michael, my sweetest heart, my beloved. I texted a few more people. I rapidly wrote this. Our tiny dog Lucy Rocket would not settle. She paced the house, scratching at Michael’s chair, standing next to Michael’s shoes, leaning against us with her anxious body. We took turns showering, Ben sitting by my phone so I didn’t miss anything if the doctor called back. They will call before they intubate him, if there is time, so we can tell him again how much we love him. If there is not time, they will call us to say he’s already been intubated.

And now we wait out the dark night, all of us trying to breathe.

If you are the praying type, please send up what you have on Michael’s behalf. The number of things our whole family has gone through this year is astonishing. We plead with God to let this be another thing we’ll all look back on with awe and wonder while holding Michael’s hand, amazed at what we’ve all overcome together.

Thank you for your continued support, holding us up when we can barely stand under the weight of this vicious thief of a disease.