Journey to a Cure

When we checked into the hospital on Halloween day, we understood it would be a lengthy stay.  The discharge date was based upon how quickly the engraftment process progressed, and specifically based upon blood count levels.  Our mantra has continued to be “one day at a time”. Monday November 30 is that magical milestone discharge date, with our hospital stay ending at an even 30 days.  Over the past week, my WBC count has increased steadily from 0.1 last Monday, 0.3 on Thursday, 0.9 on Saturday,  1.5 on Sunday and 3.1 today!  It’s impossible to describe how much better an improving WBC count makes me feel both physically and emotionally.  I couldn’t be more excited to breathe some fresh air, sleep in an actual bed and eat some home cooking.  Our next stop is to move into the nearby apartment we rented for the next 60 days or so. Upon discharge, I’ll continue to return daily to MD Anderson but rather than to the hospital I’ll be an outpatient visiting ...

The MD Anderson blood testing process is a factory.  When you go in for a blood draw, there is a bank of over 50 stations ready to draw your blood.  Combined with all the test requests from the hospital rooms like mine, from the buildings full of clinics, blood donations,... it’s amazing they can turn around results within an hour.    Yesterday (Day +17), they had a technical issue that backed up this process and had to redraw my blood late in the afternoon.   This turned out to be a godsend as the result was a White Blood Cell (WBC) count of 0.1.  This result, repeated and confirmed this morning, means I currently have 100 WBCs per liter of blood.  The average person walks around with 5 liters of blood and within the normal range of 5-10 thousand WBCs per liter.  So, I have around 500 white blood cells on the way to a normal level of over 25,000. It’s not much, but something to build upon.  And most importantly, it means the engraftment proc...

The past week has been tough as I manage the side affects of all the chemotherapy and as the donor cell engraftment process continues.  If you’ve had the unfortunate experience of chemotherapy, you can relate to the fatigue, nausea, hair loss, digestive issues and other side affects.  This is just much worse due to the intensity of the chemotherapy given over a short period of time.  But, the nurses here are absolutely amazing and know how to help you get through it all. Most importantly, all signs are that I'm on schedule and the process continues to progress as planned.   My white blood cell count went to 0.0 on day +6 and has remained there since.  When this count begins to increase, the side affects should lessen.  My platelet count is also low.  Since I had the craniotomy just prior to the transplant, I have an increased risk of serious bleeding.  They are keeping the platelets at a safe level of above 30 which requires almost daily platelet ...

Today is Day 4, the 4th day since my donor cells were transplanted with the goal of replacing my immune system with that of the donor. The immune system is a complex system consisting primarily of infection fighting white blood cells, oxygen carrying red blood cells, and blood clotting platelets.  These cells are generated from the stem cells in your bone marrow.  There is a normal lifecycle of these cells, with literally millions of new ones created every day while older ones die out.  With my cancer (CLL),  the cancerous white blood cells do not go through this normal lifecycle and instead persist. There are so many intricacies to the immune system that I will never understand which is why I’ve put my complete trust in the doctors and the amazing process they created. While the pre-chemo regime brought my (old) cell counts down to a low level, it does not completely remove all of the old cells.  So the past two days included another chemo regime to remov...

Yesterday, November 6, 2020 was Day 0, the day that my donor’s stem cells were infused. This is obviously a BIG day for me which is affectionately referred to as my new birthday.  Given all the preparation and planning, the process was somewhat anticlimactic.  It was simply a 30 minute infusion of the donor cells through my Central Venous Catheter (CVC) line. I’m actually feeling pretty well, other than bad fatigue and nausea.  I’m told that the next 2 weeks are typically the most difficult since the cumulative affects of the chemotherapy kick in and my blood counts will continue to drop to near zero as my old immune system is replaced. At this point, there is a few day pause in the process (until Day+3).   They are constantly monitoring my vitals and blood counts, and based upon that give infusions to replace electrolytes along with preventative meds to protect my organs and against infections. Gary

As I started exploring the details of the stem cell transplant, the first couple decisions were “where to have the procedure” and “the best option for donor stem cells”. The decision on which hospital came down to a few key considerations:  being home or away, the statistics on outcomes for each hospital, and the transplant process used.  MD Anderson does a large number of transplants, has top ranked outcomes, and the team there very quickly earned my confidence. I had already trusted Dr. Thompson at MDA as my CLL specialist and he works very closely with my transplant doctor Dr. Shpall.  The combination gave me confidence that I’ll be in good hands.   The type of transplant is called Allogenic, meaning from a donor.  My disease would not allow for an Autologous transplant (from my own cells).  After testing my amazing siblings Julie and Dan for a match, they both tested as 1/2 match.  Each child gets 1/2 of the matching antigens from each of their par...

We arrived in Houston on Wednesday afternoon (October 28) after a white knuckle drive from Denver.  The combination of ice packed roads in Colorado / New Mexico and torrential rain in Texas turned the 15 hour drive into over 18. Following another negative COVID test and consultations with my leukemia and transplant doctors, the time had come to check to the hospital.  On Halloween, three weeks later than originally planned, I was admitted to the hospital.  Since there wasn’t a specific check in time and this first day was “hydration day”, we decided to have a couple beers, watch some college football in the hotel and check in later in the evening.  The hospital room is very nice, with a separate pull out bed for Connie, a window with a view of the old Houston Astrodome and new NRG Stadium, and plenty of room for our stuff.  And we brought plenty of stuff including lots of food and our coffee making set up.  I have the vision, call it hope, that I will be on...