After 2-weeks of testing and inspecting every part of me, today we were cleared for the bone marrow transplant and signed the consent documents.

We are now at T-7 days to transplant. The fun begins tomorrow as I will have a IV catheter, referred to as a Hickman, inserted into my chest. This will become my constant companion for the next 2-3 months, longer If needed.

At T-5, this coming Friday, I begin four consecutive days of chemotherapy. T-1, next Tuesday, total body radiation will be administered.

On launch day, referred to as day zero, my brother will have his stem cells harvested in Chicago.

When the cells are ready, they will be immediately passed off to a courier who will be personally responsible as they travel cross country to Seattle. I will be admitted to the hospital on that day and receive the cells, most likely very late at night as soon as they are ready.

After the infusion, I will stay in the hospital for 2-3 weeks for monitoring and support of the many side effects we have been told about.

This would not be possible if not for two things. The absolutely wonderful care I have received here at Fred Hutch, including the push to get me the compassionate use trial drug that saved the day, as well as my brother who is offering his cells to save and prolong my life. It is said that the highest form of charity is an anonymous donation where the recipient does not know where the donation came from and the donor needs no personal public recognition.

I am humbled to know my donor, and although he is not looking for it, he deserves the acknowledgement and deepest gratitude for this selfless act.

I will continue to post daily updates to our blog and will from time to time send you messages via email.

Sharon and I are deeply touched by the support, caring, and prayers that have come our way. We feel it here.

We hope this message finds you well.

Sincerely,

Larry and Sharon

We had a full day today of clinic visits. No more bumps in the road. Only warning signs of what is to come, meaning the side effects of treatment. I have this vision in my head that what is about to happen is kind of like what you would see in a cartoon movie. Think of Wile E Coyote and the Road Runner where the Road Runner is slammed into by a giant asphalt rolling machine and is flattened to the ground. Then slowly in the next scenes is peeled up from his head until is upright and then reinflated like a balloon from bottom to top. I think that is what this process is going to be like.

What really struck me today was my visit to the radiation oncology suite. This visit was preparatory for the day before I receive the cell transplant. On that day “-1” I will receive 40-minutes of total body radiation to kill whatever cells are left in bone marrow.

The fascinating thing about the visit is that they had to measure me. The idea is that my abdomen and trunk, or torso is thicker in diameter than my neck. The want to blast me with enough radiation to get through my torso and lessen the dose where I am thinner. Makes sense.

The way they measured me is what was so impressive. I thought with all the technology around here they would place me in some kind of scanner and get a digital map of my dimensions. But no. They took out a big metal caliper as well as a tape measure and they determined how they would program the radiation in that way. Total old school. I guess when there is something that works you stick with it.

Tomorrow is the day we meet again with our attending physician and sign the consent to move ahead. The countdown will then begin the following day when I receive the IV port into my chest.

Hope you are well.

Larry and Sharon

Sharon and I had the weekend off from medical visits. We did visit the Amazon Spheres and it was amazing. We also walked to the Seattle Sculpture park on Puget Sound. It was very nice.

Today we are back at it with clinic visits getting our ducks in a row. I had a consultation with an Infectious Disease specialist and discussed the ways they plan to protect me against infections as the bone marrow transplant takes root.

The big event of the day was a visit to the MRI department. I was there for about 3-hours including prep, administration of a medication to slow my gut down and drinking a quart and a half of contrast dye. Then the scan for close to an hour.

Now we wait for the results. And the waiting game is really tough. It plays tricks on my mind as I speculate the pendulum of results. No matter what, we need to results by end of day tomorrow as on Wed the 24th we have what is referred to a data review and if all the stars are aligned, I sign the consent and the countdown begins.

Thanks to all for providing support.

Larry and Sharon

Today I underwent a bone marrow biopsy. Actually two of them, one within each iliac crest. I was told that as a patient I am a bit of an anomaly as I undergo this procedure with only local anesthetic. For me this testing is a bit like going to a dentist – which I just did. Lidocaine stung as it was inserted and then I felt only pressure. I was told the samples were adequate and now we wait for the pathology report.

My back is sore, although in keeping with our stay active principles, Sharon and I went out on a 4+ mile walk treating ourselves with a soft serve ice cream when we returned back to our apartment.

Tomorrow we will visit the Amazon Sheres. We have walked by these many times over the years and there are limited tickets only 2-days a month. We were lucky enough to get tickets. They were as tough to get as a hot concert ticket.

The weekend is going to focus on rest and relaxation. Hope yours is the same.

Larry and Sharon

https://www.seattlespheres.com/

Many visits today for mind and body. We started with a visit with our “team.” They were satisfied that all is going well. We have a slight bump chasing a PET scan area in my stomach area that “lit up” and I will have an abdominal MRI this coming Monday. The team did not seem concerned. They also reported my kidney function is good as is my heart. We met with a nutritionist who suggest adding protein to my diet.

At the end of the day of visits I had a full set of lung function tests. The technician told me on the side, that all looked good. Check off another box.

Sandwiched in the middle of these body visits we had visits for the mind. One visit was with a Spiritual counselor. She was excellent, listened to our needs and as we told her we honor the Shabbat each Friday night she realized we could not light candles when I am hospitalized and and hour or so later we received battery powered tea lights. Very impressive.

Lastly we visited with the social worker on our team. Also very well received and offered her support as we need.

All in all a good day. Tomorrow morning I will undergo bone marrow biopsies, not one but two, one in each of the iliac crests of my pelvic bones. Sharon and I have been walking daily 3-4 miles a day and I am going to need to slow down a bit in the recovery from this procedure.

More to come as the process ramps up.

Larry and Sharon