Day +16, Thursday

When I was 5, my family spent a year living in Czechoslovakia, my father the recipient of a Fulbright Scholarship, from 1986-1987. Before we left, my sister and I got to each pick out a new toy, and I selected Whiskers, and she’s been with me ever since. It was both a wonderful and terrible experience. It was a cultural shock for us all – my 5 year old brain struggled with warm milk at lunch, missed my real cat in Minnesota, and dipped my fingers one too many times in the powdered sugar bag. It would have been better if the sugar was in our kitchen; alas, it was in the downstairs kitchen of our landlords. I never quite mastered the art of leaving no trace. They seemed to favor my younger and better behaved sister.

The castles were beautiful, and I made friends at the local school I attended, excelling at gym and music. It was fun exploring Prague with my Mom and younger sister Karyna, and as a family, we went to many events at the US Embassy. Halloween was spent running to catch up with the BIG group, trying not to trip on cobble stones, but happy to see American candy like Snickers and PB Cups. In mid December, I read to the carp in the bathtub before our landlady electrocuted it with a toaster for Christmas dinner, and that spring, refused to eat the just butchered rabbit on a relative’s farm because I didn’t want to hurt its – the rabbits – feelings. It’s a wonder that I’m not a vegan. I ate gooseberries until my stomach hurt and loved to romp in the woods with Karyna and my cousins; local fairytales warned us of the mushrooms not to eat.

And then I got sick with the chicken pox.

What is a nuisance of an illness for many, nearly took my life. Through connections – remember, this was Eastern Europe before Communism fell – a fried of my parents was able to get me to the local Children’s hospital where my parents signed me over to The Czechoslovak State. I was very very ill and don’t remember much, except that I really wanted to take my blankie – the one that I sucked my thumb with – into the hospital with me, or my cat Whiskers. My doctor told my parents anything that went in with me, would need to be burned, likely because I had a nasty virus and he was just doing his job in the interest of public health. The last thing I remember before being wheeled, naked on a gurney, at sprint speed through dimly lit, chilly corridors, was Dad ripping my blankie in half. That memory brings tears to my eyes still. I was mad that I didn’t have Whiskers, only half my blankie but then don’t remember anything for a few days, except the dream where I was walking towards a light, but then an old man in a robe smiled at me and I was afraid, so I turned around and ran back.

For 5 weeks, I battled for my life, my doctors not knowing what was causing my body to break down. Because the house we lived in did not have a phone, my parents would need to walk several blocks to the local pay phone where they would call first thing in the morning for an update, to see if I had survived the night. My Dad, who spoke perfect Czech to that point, developed a stutter due to anxiety, so my Mom would make the call. They were told I would not survive, but they called every day still. I was tested for Smallpox and HIV/AIDS, and quickly isolated from the other children; I had 3 bone marrow biopsies – in my sternum, hip and ankle, all strapped down and awake, all without pain medicine. I screamed when they did my ankle and for years after the biopsy, my ankle bothered me – physically it was OK, this was more likely due to PTSD from trauma. Eventually, my doctor received an experimental drug from the UK that likely saved my life, but we didn’t know that at the time. The mirror in my room was taken away, my pox scars covering more of my face than my skin, and one of my nurses would sketch pictures of princesses and castles for me and I would do my best to color them in, staying between the lines (still tricky at 6). I learned to love drawing and my line work got better. It felt very special to be able to sit in the nurses lounge, just across the hall from my stark room.

I was not allowed to see my family; visiting day was Sundays for a few hours, where I would crawl onto the radiator under the window. I found that if I shouted up, that my Dad and sister could hear me better through the glass, but I don’t remember much of what we spoke. Karyna remembers going to see me, but more recalls the yellow of the safety bars, and red trim on the building; as a 3 year old, these are some of her earliest memories. Occasionally there were American friends that came to visit, Keith and Grace and Pam and Jerry. At one point, the door fell off of Suzy, our VW Van and I remember thinking this was impossible because Suzy was a van! Over time I got better – it just took a very long time for my body to recover.

My family and I all suffered so much, friends as well as witness to our trauma, but we survived, and we returned home August 1987. I remember watching my Dad kiss the ground in front of our house and I tried to hug the cat, who wanted nothing to do with me, so I kept chasing her and eventually she relented. That fall, I started first grade at J.J. Hill Elementary and my family did what we could to return to a normal life. But a normal life for us meant a lot of illness for me, and the fear that accompanies every sore throat, each sniffle. Yet we all managed to survive to the present time.

In 2018, having just been diagnosed with GATA2, I watched a Youtube clip of Dr. Holland talking about the case of a 10-year old girl in 1993 who died from chicken pox. She was the missing link that pointed him in 2010 towards the direction of GATA2. I heard that and I cried – I sobbed for her, but also for my six year old self who was alone and so scared in a foreign hospital without her cat, or her parents, sister, or even her full blankie or Whiskers. I cried because it so easily could have been me. I suppose I look at my bone marrow transplant as a way of book ending one experience with the other, except I’m older and we know the genetic time bomb lurking inside of me. This transplant is an opportunity to make things right.

That being said, those times when I’ve been afraid, I’ve thought of my six year old self and how she overcame some very difficult times, how she put her head down and survived. I drew from her strength because she is me; times are different and there are so many new tools and technologies meant to make life easier, more enjoyable. But I think of my younger self and I’m proud of who she was because that’s a pretty fucking badass thing to overcome. I’m proud of her because I love the person she has become in spite of some pretty difficult things in her life.

That was going to be my caption of the day, but that’s quite enough. It’s the story behind why I’m here today at the NIH. I survived something, and then continued to survive for many years not knowing that the culprit was GATA2. Clearly, I am the daughter of a historian and that just had to come out. Other pictures of today :