Today was the third day of chemo. I am now midway through the six day countdown. In three days my brother’s cells will be a part of me. So far so good. Luckily I am having minimal side effects at the moment. Although I am told that tomorrow the regime is to add a second much stronger chemo drug, which will require me to stay in the clinic for 4-5 hours of IV hydration. On Tuesday I will receive total body radiation and again I am told the reaction to these agents will certainly take hod.

I have never been a sit on the couch kind of guy. And leading up to this, as well as the last 3 days of chemo I have been walking 3-4 miles per day. The nursing staff was amazed this morning when they asked how I was doing and I said pretty and told them my milage. By the look on their faces, I guess I am not the average bear.

The day before we began chemo we had a nurse explain to use the schedule. And to make sure we understood she mapped it out on a whiteboard as follows:

We have made it to day three. The big date is circled. Where it says “flu” that is not influenza, it is the chemo drug Fludarabine. Mel = Melphalan, which is the heavy drug, and TBI – Total Body Radiation.

Hope you are well.

Larry and Sharon

I spent the morning in the clinic and received my second day of chemo. Two down, two to go followed by total body radiation and then my bone marrow should be like a fertile soil bed, ready to be planted. So far so good. Tomorrow is more of the same and then as I understand the process the therapy becomes stronger with more potential side effects. I am taking this one-hour and one-day at a time.

Last weekend as I mentioned we visited the Amazon Spheres, an indoor terrarium like structure that contains thousands of species of plants from all parts of the world. As we were walking around we were talking to one of the docents who said the day before we arrived an extraordinary event had occurred – the blooming of a corpse flower. We had heard about this but the blooms are so rare and so unpredictable that they are difficult to be in the right place at the right time. Although we are told, when the bloom begins to open the scent is overpowering as in its name. By the time we arrived the scent was gone and the flowers still existed.

Given what I am going through the idea of seeing or even thinking about a corpse flower felt a bit sensitive. The photos that follow show what an amazing bloom these two plants produced.

Hope you are well.

Larry and Sharon

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