We visited with Dr. Kadia, my leukemia doctor, earlier this month. This was the first time we had to discuss the results of the recent CT scan and bone marrow biopsy. It seems that most of my swollen nodes are back to normal. The only one that is still enlarged is the one that originally measured over 10 centimeters long. It has shrunk to a bit over 4 centimeters in length.
Dr. Kadia began the discussion as he entered the room with acknowledgement that the trial drug, ABT-199, has pretty much done its job. Though I am not in remission, I am about ready to begin the stem cell transplant process. He reasoned that I am healthy. I have three matched donors. I have approval from my insurance companies. And further progress will be minimal. We are also concerned about the uncertainty of the health care system as it stands at this time, as well as the cost of continuing with this drug if it is approved by the FDA. At some point, I would have to pay for it myself. We really don’t know the long term response to this drug, how long it will work, if it is a cure or another stop gap measure. In short, there are too many unknowns to continue this path though there are new drugs in the works that hold promise.
We agreed to continue the program until June when I am scheduled for an additional CT scan according to the trial protocol. After that time, I would move to Dr. Khouri’s care as a transplant patient. Dr. Khouri’s scheduler called shortly after our return to begin the planning. The chosen donor has once again agreed to provide the stem cells. Pending successful test results on both him and me, the actual transplant process will begin on July 10th. Before that I will begin the three day test regimen on June 27th. This will conclude with an outpatient infusion of a powerful chemotherapy drug on July 3rd. and admission to the hospital for the three week isolation on the 10th.
Meanwhile, we have updated our need date with five housing ministries indicating that our need date is now firm. Surely one will have an opening when we arrive in Houston the end of June. It seems this is a serious leap of faith, and it truly is. If we don’t get an apartment for the roughly three months that we must stay in Houston, the transplant expenses will grow exponentially since we will have to stay in a hotel for the duration.
Our Oregon daughter, Tara, will join us a few days before our trip to Houston to help pack and drive us there. We need the car for transportation to places shuttles do not go. She will also stay a few days in Houston helping set up our living space and training her mother to drive in Houston! That should be a fun job. I’m glad she is taking that one on since my wife is directionally challenged.
As you can see, things are beginning to move quickly. It is exciting and a bit daunting all at the same time. How do you pack for a three month trip away from home? Already, my office is beginning to look like a storage unit. Of course, we must remember that everything must fit in our car; Melanie doesn’t drive our truck. She says it is “too big”.
We value your prayers during this extended time. You can pray for the following:
- Wisdom in packing
- Travel mercies
- That testing will go smoothly for both my donor and myself
- A successful transplant.
- That I will not suffer any Graft vs. Host Disease (GVHD) which is the most dangerous part of the process.
- That I will remain healthy throughout the process. (My immune system will again be severely compromised.)
- That Melanie will stay healthy both physically and emotionally. (Being a long term caregiver is extremely stressful – and she has to do it away from home.)
- For a support group for Melanie while we are in Houston.
- For a complete cure
I plan to keep this blog going through the entire process. I want it to be an educational opportunity for others who are thinking about a stem cell transplant. I want to use it to keep you all informed. There may be time that I will have Melanie write for me or even one of our daughters.
The countdown has begun. T-81 days and counting!