129 days later…

Many of our readers will have heard this news already, but I wanted to add an official announcement. Brad is home! Yesterday we busted him out of the hospital (okay, maybe wheeled him out would be a more accurate characterization) and brought him back to our house where he belongs. (Pictured below: him lying on his rightful couch.)

The days leading up to his discharge were quite a whirlwind, getting a lot of things organized—especially the home nursing help I’ve hired to stay with him overnight, which is making everything vastly easier. His care needs are still profound: he takes more than 30 pills daily, plus eye drops and on-demand medications; he’s on intravenous nutrition (hooked up by yours truly) at night; and he needs a lot of help on the many flights of stairs in our house. But he ate dinner with our family last night, at the dining room table, and the girls were about as happy as I’ve ever seen them.

His doctor, before we left, said he was there for a total of 129 days. Brad immediately snapped back: “Nobody keeps me in the hospital for 130 days.” And then, four months to the day after he received his new stem cells, we left.

 

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Milestones

The last time I updated was a milestone for Brad, day +100 post-transplant. Since then we’ve passed a few more markers and anniversaries, but I will start with the most recent and most important so far. Yesterday, Brad had a PET scan, and it was clear, showing no evidence of cancer.

It’s routine to do a PET at three months or so post-transplant, and nobody was really expecting to see a relapse at this point, but it’s obviously a tremendous relief to have that confirmed. It’s also a reminder of what his ordeal has all been for, to fight the cancer that would certainly have killed him. He will have more PETs in future (next one likely at six months post-transplant), but we can worry about those later. For now we’ll celebrate this one.

This has been a big week in other ways. Yesterday marked four months since his admission for the transplant. And Monday, by chance, marked exactly a year since Brad went into the emergency room with the ruptured lung tumor that signaled to all of us that his cancer was more aggressive, and more dangerous, than anyone had thought. Between his chemo treatments and the stem cell transplant, he has spent almost exactly half of the past year hospitalized. My memories of driving him into the hospital after what had seemed like a perfectly ordinary Saturday (I put in my summer vegetable garden; he took Lucy to the pool) are keen; I ran every red light between here and the hospital, and we were both terrified at his symptoms and had no idea what was happening. Thinking of that day is a reminder, in many ways, of how far he has come. Brad is greatly weakened and still ill, but we have a better sense of what we’re dealing with. He’s on the other side of a debilitating but extremely promising treatment, not facing a completely unexpected and unknown ordeal. For that, and for the clear PET scan, we are deeply thankful.

Last week we had a large family conference with Brad’s entire medical team to discuss his prospects for coming home. It was very productive, and we all concurred that discharge needed to be slowed down until he has a little more independent mobility and slightly less overwhelming care needs. In fact, our caseworker from his health insurance company called me to say she felt he still had too many complications and would be safer, for now, in the hospital. When the insurance company says, “no, no, we think we’d rather pay for more hospital time,” well, you pay attention. So now the entire team’s focus is on giving Brad the skills and retraining he needs to operate safely at home with his compromised vision.

The tarsorrhaphy (suturing shut of the eyelids) presented particular difficulty for his home care, as the care for it is very time-consuming and tricky. Happily, the corneal team concluded that it has done its work in helping heal the corneas and removed it two days ago, to our surprise. In its place they inserted something called “bandage lenses,” clear protective contacts. Brad’s vision has improved somewhat, particularly the peripheral vision, which is encouraging, but it’s still not nearly good enough to help much with independent function. A rehab team is coming to assess and work with him tomorrow, and I’ve also been in contact with some vision-rehab specialists who are going to give him some retraining.

Meanwhile, at home, I’ve been cleaning and reorganizing, starting to get things ready and set up the rooms he’ll primarily be using to be more functional for him. I’m also, with help, looking for caregivers, as we’ll be hiring in-home help, especially at first. It’s starting to seem more real that he can come home—and also more exciting. Last week, going into the family conference, I felt very apprehensive. His care seemed so overwhelming that it would be unmanageable at home. But now that we are addressing his barriers to functioning (such as his lack of confidence with reduced vision), the prospect of him coming home feels like great news—but even that is not as great as that clear PET scan.