Home Leave?! What!?

When Michael was in the midst of chemotherapy at Princess Margaret Hospital, they would often want to start a new round early on a Monday morning. The pharmacy that supplies the chemo drugs is closed over the weekend, so the Hematology Ward would admit Michael on Friday so that he was technically in patient and the drugs could be ordered that day. Then they would allow him “home leave.” A bed was kept for him, but he was allowed to go home, returning late Sunday night so he could begin chemo early the next morning. It was kind of awesome, giving Michael more time at home to sleep in his comfy bed instead of just chilling at the hospital doing nothing.

In Michael’s post-transplant care at Queen Mary Hospital, there’s been a lot of talk about when he’ll be released. The last thing keeping him there are the gastrointestinal issues cause by the Graft vs Host Disease (GVHD). He is anxious to come home, and I am anxious about him coming home. He’s in a pristine isolation room with a team of 12+ medical professionals caring for him in any 24 hour period. Our home is currently free from plants and other risky things for a transplant patient, but there’s just me and our sons, none of us medical professionals. But my biggest source of anxiety about him coming home is what comes next.

We know following Michael’s release he will eventually end up back in the hospital.

Whether his platelets end up being too low and he needs a transfusion, he spikes a fever, or the GVHD ramps up, odds are extremely high he’ll end up back at Queen Mary. However, the next time he’s admitted, it won’t be to the isolation ward with a big room and bathroom all to himself with views of the South China Sea and a nurse who will make food for him any time he calls. It will be to the general men’s ward, with two to ten other patients in his room, a single shared toilet, and whatever food he is given, on the hospital’s schedule.

If he leaves Queen Mary before he is truly ready with the GVHD well under control, it will only hasten his return once he’s home and forced to get all his nutrition by mouth instead of through an IV. Knowing how low his morale is in his current situation, I can’t imagine how much lower it will go from here when he isn’t getting such personalized care. So I’ve been completely torn in desperately wanting him HOME with me, our children, our little dog, and all the comforts of the place we live, while also gripped with anxiety over what is going to happen if his body isn’t ready, even if his mind and heart are, and wanting him to stay where someone that isn’t me gets to make all the decisions on what is serious and what isn’t. It’s been a huge weight and I’ve hated the feeling of being pulled in two different directions while I’m already exhausted and stressed over dozens of other large and small things.

So imagine my complete surprise when the head of Michael’s transplant team proposed something I never would have thought to ask for: home leave.

The doctor suggested Michael would be allowed to come home over the weekend to have a trial of life at home, while the hospital kept his room for him to come back to on Monday morning. This was a truly astonishing offer, as there are only twenty-four transplant isolation rooms in all of Hong Kong, and Michael has been occupying one of them for sixty days. To let him try coming home to see how all of us can manage, while keeping his room open for him to come back to, seemed like the perfect solution… for me.

Michael didn’t understand my enthusiasm, as for him it’s like getting a taste of freedom and then being yanked back into isolation. Which is completely fair. It does feel like that to him and I will not discount his feelings at all. But for me, this option was like a massive safety net under a high wire. All the anxiety I was carrying surrounding Michael coming home dissolved.

The doctor said if the home leave trial goes amazingly, he’ll be able to come home for good quite soon, and we’ll all feel more confident about being able to handle it. If it goes less than great, then we know at any point during the home leave we can race back to Queen Mary and the team members who have been caring for him the last two months can immediately step in and take over with perfect continuity of care.

It took a week of careful planning. There was a last minute deep clean of our home, calling around to figure out creative door-to-door transportation which didn’t involve any public transit or walking for a very weak and shaky Michael, and then several meetings with doctors, nurses, and even the dietician to make sure we were all on board with Michael coming home for the weekend, with a scheduled return for Monday morning at 8:30 a.m. It was a plan with many moving parts, any one of which could have derailed it. But it all came together on Friday afternoon and after sixty days in isolation, Michael breathed in the hot, humid air of Hong Kong when he stepped outside and into the waiting van which took us all home.

There’s so much more to tell you, but right now we have two month’s worth of just sitting on the couch and holding hands to make up for, while we watch all the movies we’ve missed since June, hanging out together as a family, feeling grateful for the gift of time with Michael.