Wednesday, May 6, 2015

Love in a Time of Uncertainty

It's been awhile since my last blog post, despite my best intentions about being more regular at writing. Somehow I don't have the time that I did when I was a Peace Corps Volunteer :) As a Peace Corps Volunteer, I wrote about many things: the struggles of adjusting to a new culture, missing cheese, working at the health center, missing cheese, learning Kinyarwanda, and the idiosyncrasies of living in a convent. But I also wrote frequently about a young boy who lived with the nuns and me.

It has been nearly three years ago that I met my little friend, Francois D'Assisi. 

He was just three at the time, a toddler, and now we estimate that he's six (he was abandoned in some banana trees when he was an infant, so we don't know his exact birthdate).

It has been three years of incredible joy: teaching him English, carrying him around on my shoulders anywhere he asked to go, bedtime stories and bubbles, haircuts, and stargazing. He is the most joyful child I have ever known.

The happy moments have been punctuated by periods of intense sadness and anxiety, mostly about his health and future. D'Assisi is HIV+, and although he is consistent about taking his anti-retroviral medication every day, he has gotten very sick in the past and we do not know what his life expectancy will be.

His health had generally been fine for awhile, until a few months ago when the nuns noticed that he had become increasing forgetful: leaving his pen and notebook at school every day or forgetting about a new toy that I'd gotten him the day after. They decided to take him to a hospital in Kigali, the capital, about 7 hours away. They gave him an MRI, which found lesions on his brain. I cried the entire night after seeing his brain images.

The last almost three months since that discovery have been a blur for me, trying to navigate the Rwandan healthcare system with him. After the doctor in Kigali found his brain lesions, he told D'Assisi and the nuns to come back in 6-8 months if things got worse, and gave them no answers to why the brain lesions were occurring. I was heartbroken, and furious, and determined.

D'Assisi trying ice cream for his first time after a long day at the hospital in Kigali. He was not a fan. 
I contacted my uncle in the US, who is an infectious disease doctor, and we began to have tests done for the most likely possibilities; all of which came up negative. A mutual friend connected me with an American pediatrician here in Rwanda, who was also tremendously helpful in narrowing down the possibilities; D'Assisi and I have been incredibly, insanely lucky to have been able to work with both of them.

It has been three frustrating months of waiting for test results and being sent from Rwandan hospital to hospital and being told different things. There was the time we were sent to three different labs in Kigali to get a viral load and a CD4 count, none of whom would actually give us the test. We had a blood sample taken for a viral load test at a local health center, and had it sent to the district hospital. It was over a month of the nuns and I calling the district hospital every day for us to get the results (and even then we only got the results because I went all the way to the National Laboratories, told one of the workers our story, and he then called the head of lab of the district hospital, who claimed she'd sent the results weeks ago). There was the day we went to visit a neurologist, and we were told he went to a different part of the country for the week unexpectedly, would we mind rescheduling our appointment for four months later?

Does it look like this kid can wait four months for another appointment? Didn't think so. 
With the help of my uncle and the pediatrician, we narrowed the possibilities down to two things: brain lymphoma, or progressive multifocal leukoencephalopathy. For the first, we need a test called a cytometry flow, which isn't available at all in Rwanda (although we had a few false leads). For the second, there is no cure, even in the US.

There is something about children with terminal diseases that seems so completely unfair, so grievously sadistic. As if D'Assisi didn't have enough to deal with already by having a chronic illness or being an orphan. As if he needed a terminal illness with a test that isn't even available in Rwanda. Bad things are supposed to happen to bad people, and good things are supposed to happen to good people, or so the universe tells us. When terrible, horrendous things happen one after another to the most joyful six year old you've ever met, it's just gut-wrenching.

The last few months have not been easy, but we are trying to stay positive. Our next hope is to take D'Assisi to a hospital in Nairobi, Kenya, where we have found a pediatric neurologist, and get the cytometry flow test. The nuns applied for his passport a few weeks ago, and we're waiting for that to go through immigration before we can buy a plane ticket.

There has also been a lot of uncertainty on our future together, beyond medical treatment. I have known for a long time that I want to adopt him, and the nuns fully support that decision. I finally decided to go through with the process (after being told different things by different people, including Rwandan lawyers: that it was illegal for foreigners to adopt, that I had to be married, etc.). I had an appointment with the local government to see what was possible, and was told that I had to be 35 to officially adopt him. AKA, 10 years from now. AKA, when he is 16 years old. But, I could become something like a legal guardian for him (which would allow him to come live with me and for me to raise him; I couldn't make medical decisions for him or give him US citizenship). Depending on how his testing and treatment go, the nuns and I are planning to let him spend part of his time at my house (just weekends at first) in June.

I keep waking up and hoping this was all a bad dream. I keep trying to tell myself that maybe they mixed up his brain scans with someone else's. Maybe one of the other tests was a false negative, and it's something that's more easily treatable. The uncertainty of it all has been the worst part for me: not knowing if he has brain lymphoma and needs chemo, or if he has progressive multifocal leukoencephalopathy, with a prognosis of a few months to a few years, or if the doctors here have just made some kind of mistake and it's something else entirely.

I spin the situations around in my head when I'm lying in bed at night. It's a dizzying game to play, with endless possibilities. In the meantime, I'm trying to do the only thing I can really do: love him, even in a time of uncertainty.