Good day today. First stop was a bandage change from the catheter that was inserted yesterday. All looked good, although the area around the surgery is still sore. We were also taught on the ins and outs of covering up the catheter when I am taking a shower. That is definitely going to be a 2-person job.

Next up was a bit like old home week. My chemo infusion was delivered in the clinic where I had received all my previous CAR T treatments. The staff was excited to see and spent a fair amount of time visiting and catching up with Sharon and me. It very much made us feel like we are a part of the Fred Hutch family, and as I have commented they are invested in my care and cure.

The actual chemo infusion was uneventful. I received a dose of an antifungal medication as a preventive measure given that in 2019 I had a fungal pneumonia and subsequent lung issues.

The weather is beautiful and warm once again. The chemo did not stop me from our usual 3-mile walk this afternoon.

Tomorrow I repeat the process here and in Chicago my brother Dave begins his prep.

Hope you are planning an enjoying Memorial Day weekend. I will be watching the Indy 500 from my treatment room. Even though the cars go round and round making only left turns, it is mesmerizing to me.

Be well,

Larry and Sharon

A successful day. The IV chest port was inserted without fanfare. The device is called a “Hickman Catheter.” The name is important as Dr Hickman who invented this was a doctor at Fred Hutch, my treatment center. It is now used worldwide. This is another reason why we feel so blessed to be here. This is the place they wrote the book on bone marrow transplants. After the insertion, as I was getting ready to leave the procedure room I spotted an x-ray on the big screen that confirmed the placement of my catheter. I thought it was pretty interesting. The end of the catheter is inserted in the right atrium of my heart. The area showing the wing tips are anchored with stitches so nothing moves.

Tomorrow begins the 5 days of chemo and radiation prep. We are definitely ready to launch.

Larry and Sharon

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