The beginning of the week has been a pretty good one for Todd. On Monday, he went into see the local oncologist and to get his weekly CBC. He did not need a transfusion, with his Hemoglobin at 8.5 and Platelets at 56,000. His whites and ANCs were still dangerously low. The only concern the doctor discussed with Todd that day was about removing his Hickman central catheter, fearing a greater potential for developing an infection with it in. While we know this, we have always taken great care of it and have never experienced any problems with it.
We are not sure it was a good time to remove it just yet. Although the drug in study, AG221, is a pill, they will still need to hourly blood draws for 10 hours on certain days, which means ten less arm sticks! In addition, it makes it easier to get transfusions and weekly CBCs.
Dr. Stein from Memorial Sloan Kettering called us early Monday morning to me answering in a craggy voice! I had been suffering from sinus drainage and had almost lost my voice. He was concerned about Todd, but I assured him that Todd was fine! He said he had spoke to the Drug Company representatives who are setting up the trials and that they thought Cleveland might be ready in a week or two. He asked us to call our contacts at Cleveland to see how the process was going and when they expected to start. Todd told him we would call and get back to him. Todd called BMT doctor and left a message. We didn't hear back until after 5:00 pm that evening. She said she was trying to find out who the site investigator was and would get back to us. By late Tuesday afternoon, I still hadn't hear back from the BMT doctor. I called Dr. Stein and told him that we still hadn't heard anything from Cleveland. He found out who the site investigator was in the course of our conversation and said he would send him a message. Later that evening, the BMT called saying they were anticipating a department meeting on April 10 and then they would be up and running and able to start the drug study on April 13, 2015, if there were no problems. I relayed the message back to Dr. Stein's office and I asked about Todd's bone marrow biopsy results, but they were not back yet.
Todd was a bit anxious to hear about his biopsy results, and we finally heard back from Dr. Stein today with his results and we formulated a plan for beginning the trial study. First, the results: the bone marrow biopsy done in New York, as part of the screening process, showed that his blast cells had increased slightly to 5-8%. This was up some from his biopsy on February 18, 2015, when they were at 3%. We had expected this slight increase since Todd hasn't had any chemo since February. Once again, we were pleased that the count was not higher.
Second, we talked to Dr. Stein and received multiple messages from Todd's BMT doctor in Cleveland in regards to enrolling in the AG221 drug study at Cleveland Clinic beginning April 13, 2015. Dr. Stein was good with us switching locations and actually wanted us to do what would be easiest for us. They only real concern was getting the screening results and records transferred to Cleveland and actually being able to start the trial at Cleveland ON TIME.
The main concern at this point is the window of time Todd has open to get started on the drug. We only have 28 days from the screening date of March 24 until Todd starts the drug without having to re-do all the screening tests, which would be too much on Todd. So, that gives us until April 21, 2015, as the deadline for Todd to begin taking the drug. Todd's BMT doctor said she would out of town next week, but that she would have the trial study contact nurse stay in touch with us next week to let us know if everything was still on schedule, or if there are any problems. The drug company is to do an inspection and final approval on April 10. His BMT doctor asked us how soon we could get a flight to New York through The Corporate Angel Network, in the event that there would be a complication, and the drug study start date would get pushed back at Cleveland. In that case, we would have to go back to Memorial Sloan Kettering in New York to begin the first month of the study there.
In a way, we are still in limbo about where we need to go for the study. If, everything goes according to schedule, Todd will start the study at the Cleveland Clinic on April 13, 2015. If there is a problem, and Todd can't start the study at Cleveland that week, then we will be returning to New York (likely on April 20, 2015).
Several people have expressed their concerns about Todd returning to Cleveland, since we LOVE Memorial Sloan Kettering and can't praise Dr. Stein enough. Of course, we would rather see Dr. Stein and go to MSK, but Todd feels the traveling to New York and back so much that first month would be very taxing. I think driving to Cleveland three and half hours each way is more taxing than flying and driving in, but going to New York might require more overnight stays than Cleveland. This would be harder on the family in general too. I like Cleveland Clinic; they have been very good to us, don't get me wrong, but I really like Dr. Stein and Memorial Sloan Kettering.
If you have ever noticed, that up until this point, I have not used any of Todd's doctors' names just to be sensitive regarding anything negative I may say. Dr. Eytan Stein, however, I have introduced you to through the many articles and presentation he has done via posts on my blog in the past. It would have been hard to conceal his name, knowing the work he has done with this trial drug study. I'm so happy that I have nothing say but GOOD about him! This is the kind of doctor you thank God for. I believe that he serves God by serving mankind. You can tell he has a servant's heart with compassion for his patients and their families.
Todd's BMT doctor feels we should wait on getting rid of his Hickman catheter just yet. Once the trial gets started, we are going to re-visit the issue and there is a good chance that they will remove the Hickman and put in a port for the blood draws. This would require a lot less care (no daily flushing and weekly cap and dressing changes done by me) and it would be more comfortable for Todd in general. With it in, he can't get it wet not has he been able to sleep on his stomach since he had it put in last year. It would also take away an avenue for an infection to get in.
Tomorrow, Todd goes in to Miami Valley to see the Respiratory Therapist to get a breathing treatment of his Pentamidine. He may also go to the Cancer Center to have his blood counts checked to see if he needs a transfusion. Then, we are all going to our first all-family counseling session. I'm not sure if I like the psychologist just yet; time will tell.
I have spent most of this week cleaning up and decluttering the house, so we can get ready to put it on the market. I've also started typing up a selling sheet, as we intend to list our house for sale by owner. Please be in prayer for this entire process. It is stressful and a bit sad to know how much of our belongings will have be sold. I need to also plan a garage sale soon, so I can thin out the garages and some smaller items in the house. Truth be told, I will likely have to have a moving sale too, after we sell.
We are looking forward to spending Easter with our children and my parents. May God bless you as you celebrate Christ's Resurrection! And, to my Jewish friends, I wish a Blessed Passover. Thanking God for his grace day by day.
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