A warmer day in Seattle which felt good to me for my walks back from the clinic to our apartment. I say walks – as in plural – because as the day’s appointments worked out I needed a morning and afternoon session. Given that, the Uber drivers benefited as they provided two rides for m up the hill. And I benefitted in that my walking output doubled today.

The morning visit was the usual IV hydration and electrolyte replacement. The afternoon visit was with my medical team and once again I am told I am acting as is expected. One tiny wrinkle is that I have developed a few patches of red and pruritic (itchy) skin. Unclear as to what this is, although with Graft vs Host Disease the skin is one organ that is affected by inflammation. For the time being we will treat it with some over-the-counter cream and follow this. Even though my brother was a 100% match, there is no such thing as a perfect match unless the donor comes from a twin – think Arnold Schwarzenegger and Danny Devito. Meaning that of 22 points of matching we matched on all. Having said that there are 100’s of proteins produced in blood and some are bound not to match. Hence the new cells may not be in total love with their new home and cause some irritations in different organ systems, skin and GI most likely. More to come on this.

Thanks for being a part of our journey.

Larry and Sharon

All is steady here. My scoreboard was good today. More hydration at the clinic and continued fatigue, which I wish I could shake. Having said that, if that is the worst symptom currently I can handle it. I nap throughout the day, wake up for meals and snacks and nap some more. Again, I did walk home from the clinic today so that is becoming a regular event. Tomorrow I have morning and afternoon appointments so will double my walking assuming I am able to do so.

I have been thinking about the tragedy of the submersible that dove to see the ruins of the Titanic. A terrible event. As I think about extreme travel, if I was to spend $250k on an adventure, I do think there is no doubt in my mind that I would go up toward the heavens and not down toward the depths of the oceans. Maybe someday I will get to have the chance to make such a decision. At the moment, I am hoping for some walks around South Lake Union and in a year or so branching out to somewhere close and safe.

Hope you are well.

Larry and Sharon

What can I say except I am so happy to be out of the hospital for the summer solstice. Year after year, if I had to pick my favorite solstice it would be Winter, because I knew the daylight hours would increase in length. The Summer Solstice was kind of a downer for me because for the next 6-months the days would be getting shorter.

Given this, my view of which solstice is my happy one vs my sad one, this time around the summer solstice is definitely my happy one. Many years ago our family traveled to Peru and in Cusco experienced the Inti Raymi – festival of the sun honoring the summer solstice.. It was a one of a kind experience and today the memories from this are in full view for me – colorful and joyous. If you ever have the chance to experience this please do. https://www.cuscoperu.com/en/festivities-events/may-june/inti-raymi/

Nothing new to report today. I continue to go to the clinic for my daily hydration and electrolyte boost. It takes a good half of the day and the other half I am pretty fatigued so rest, nap, and enjoy the lunches and dinners Sharon is preparing. Tomorrow in addition I meet with my clinical team of doctors.

Hope the sun is shining on you.

Larry and Sharon

A rather long day at the clinic today. All good. We met with the nutritionist who is helping to guide me to include the correct sources of nutrients. Sharon is my best expert on this and it was very apparent during the meeting that she is doing an exceptional job making sure I am eating, and keeping down, what I eat. Since our couple of bad days over the weekend things seem to be going smoother. My weight seems stable although I am retaining some water in my ankles so that may skew things a bit.

We next met with our attending and the clinical team. They all agreed I am doing great for my timeline. I like to hear that although that does not exactly take away my fatigue and general sense of malaise. Today we learned that the next big set of tests will be a bone marrow biopsy on day +28 and on that day a series of blood tests called “chimerism”. The purpose of this will be to tell us of the blood cells floating around what percentage are mine and what percentage are my brothers. The doc and I made a bet as to the outcome. I bet 70/30 my brother/me. He thought the number would be higher 85/15 my brother/me. Of course the less of cells there are left of mine the better. More on this to come as we gain a better understanding.

The last stop was for my 3-hours of hydration and electrolyte replacement, then a stop at the pharmacy to pick up a drug I will take for the next 100-200 days to keep a CMV infection I picked up, who knows when. As I am now on immunosuppressants, things like this could rear their ugly head and we would not want that.

No blood counts today so I can’t add to my scoreboard. Then I walked home and had a lovely nutritious dinner prepared by Sharon. Hope you are well.

Larry and Sharon

The theme of today is Living Deep in the Big Muddy. That is what our head nurse told me at our visit today. Not sure if she was aware of where this phrase came from and I recognized it, can home and played the Pete Seeger version.

I stayed out of the hospital last night, but it was a close call. I lost my dinner and again spiked a temp of 100.5. Since I had been blood cultured the night before and given antibiotics. Tylenol did the trick controlling the fever and it has not yet returned. Fingers crossed.

I go go the clinic daily now for a 3-4 hour treatment of hydration and electrolyte replacement. After the visit today I actually felt good enough to walk down the hill back to our apartment.

My scorecard continues to rise at an amazing pace and level. The reason I am in the “big muddy” is that there is so much going on in my body, from rebuilding my immune system, to having the new cells like their new home and not wage a war, and trying to keep all my systems going. When one thing is not going well, it is a bit hard to figure out the exact cause. So we are wading and not drowning. Some day we will make to to the other end ot the shore.

Hope you had a good Juneteenth.

Larry and Sharon