Day +97, Monday

Photo of the Day: Grateful and happy with my original GATA2 Team! Dr. Holland (far left) discovered GATA2 deficiency back in 2011 at NIH, which means he’s an awesome physician and scientist. But even more than that, he’s an incredible human – compassionate, empathetic, honest and someone who cares deeply about others. My life is better because of Dr. Holland and his Team. It was also wonderful to see Janine again and meet Vicky. Cindy, my nurse who works with Dr. Holland took the photo – I’m grateful to them all.

Monday! Today was my last Monday heading into the Clinical Center. Per usual, I hit the snooze, twice, but eventually was up and getting ready. Traffic to the NIH was light, as most opted to stay home due to our winter storm, though with 2-ish inches falling, the roads weren’t bad. I sailed through the Patient/Visitor Gate, the Parking Garage inspection and Phlebotomy. It was a trifecta of festival miracles.

My last time at the Outpatient Day Hospital was largely uneventful, and today it was just Daniele and myself. All counts and numbers were good, except my Tacrolimus level which plummeted to 2.6 (ideal range is 4-10). This was to be expected, though, as last week we stopped Letermovir, an anti-viral drug that helps prevent CMV (cytomegalovirus) infection. However, Letermovir also affects my body’s Tacrolimus level, and as such we need to re-adjust my dosage. No cause for panic – its just a matter of tracking my levels, and this is something that can be done in Asheville.

Later, I followed up with NIH Dermatology. The eczema-like rash on my shoulders is better thanks to Triamcinolone, a medium-grade steroid cream. And the rosacea on my cheeks is also better, which means that doing important things like washing my face and applying moisturizer are no longer painful. The dermatology folks were interested in a light rash on my lower arms, likely exacerbated by an itchy cashmere sweater. Even though its beautiful, I don’t think I ever want to wear cashmere again. The take-away lesson is that if I put something on my body, that even causes a slight bit of discomfort – I need to select something else.

Lesson learned.

The best part of my day was having the opportunity to visit with Dr. Holland, Cindy, Janine and Vicky. When I first came to NIH in 2018, I was accepted into Dr. Holland’s protocol and through that process, it was determined that I needed a Stem-Cell Transplant. Even though I’m working with Dr. Hickstein’s Transplant Team through the NCI (National Cancer Institute) now, whenever I have the opportunity to see my original GATA2 Team, I do. They are just good people who work tirelessly to make the world a better place. They have all changed my life for the better.

My drive back to the apartment was fine and I made a quickie stop at Harrison Tweets (Harris Teeter). I had a hankering for baked tomato/basil fettuccini, what can I say? I had tea, chatted with Mom and later Andy, made yummy food, Zoomed with Dad, Andy & Lucy, and watched reruns of Top Chef. Its cruel: I know the ending and Mom does not. But Mom knows that I know. I also enjoyed the snow, beautiful flakes swirling past our window. It was a solid day – I’m grateful. And it’s less than 100 hours (according to Andy), until I’m home – so that is pretty awesome too.

The apartment! And snow! And Mom!

  1. It was wonderful that Marit saw Dr. Holland yesterday. He is most likely one of the kindest people, not to mention also the smartest, of people I’ve ever met. That October day in 2018 was one of the most amazing days of my life. He changed much for our family. And we are grateful!!
    The rest of our time here is quickly ending. We are both ready to leave this tiny apartment and be home.


  2. Dr. Holland is a fabulous doctor, scientist and person. His work is remarkable.
    Safe trip home on Friday. There could be some wet weather.


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