The oncologist appointment was uneventful. We were happy that Todd's counts were high enough not to need any transfusions that day! The oncologist just wanted us to update him on what the doctors at the Cleveland Clinic had suggested for Todd's next step in treatment. He was unaware of the trial study drug AG-221, but after describing how it has worked so far, he was optimistic that this was a good choice.
When Todd was getting his blood drawn by his regular nurse, she was anxious to hear the latest recommendations too. We told her their decision, to pursue the trial drug study, and she began to tell us about a friend who too was proactive about researching her disease and possible treatments and had great success with a second opinion and treatment at Memorial Sloan Kettering Cancer Center in New York. She also told us about a free flight program for cancer patients that took her friend to New York for treatment. We brought this up to the oncologist and he told us that this was true. The program uses corporate jets who are flying company executives to New York on business by offering cancer patients empty seats on their flight. I went home and looked this up; actually there are several programs, but the one that his doctor and nurse were referring to is called Corporate Angel Network.
I found this program along with the others on the Memorial Sloan Kettering Cancer Center's website under: Air Travel Assistance. I have sent them an email and we are awaiting a response.
On Thursday, Todd had contacted his BMT doctor at the Cleveland Clinic to see if the other bone marrow results were in yet (including the much needed confirmation of the IDH2 gene mutation required for the study). He received a message back saying that they had NOT come back yet and that the trail study in Nashville was not at Vanderbilt, but some research hospital there. (I kinda guessed this when I was unable to find any information on Vanderbilt's website; and in Chicago, I could only find the study at Northwestern University). So, this dashed my hopes of getting an expert second opinion at Vanderbilt.
Todd had to go back to the Dayton Cancer Center on Friday, to have his blood counts checked again. It confirmed what we already knew, he needed a transfusion. Wednesday and Thursday had become increasingly draining for Todd and by Thursday afternoon, Todd didn't get out of bed. His red count was just below the threshold at 7.9 and his ANCs and white counts were almost non-existent. His platelets were up though around 56,000. By this time of the day, almost noon on a Friday, the cancer center was NOT able to get Todd into the Advanced Treatment Area for a transfusion at either hospital: Miami Valley or Miami Valley South. The only way for him to get his transfusion that day was to be temporarily admitted and put into a regular hospital room on the oncology floor. Todd resisted this idea, and tried to side-step it once we got to the hospital, but they only sent us to admission and registration anyway. We both knew it was going to be a long day, but I have come to accept this. I purposely did not plan on accepting any sub jobs for the day, anticipating this. I tried to reassure him that he was just going to have to suck it up and wait. What was the alternative? He would have maybe been able to get a type and screen done that day, and come back the next morning, but that would still end up taking at least five hours or more. Plus, he would have been in bed the rest of the day Friday feeling so weak and tired, with no relief. At least he could make himself comfortable, order dinner from the hospital menu, and get his transfusion done so he could start feeling better the next day. After his transfusion, he felt extremely hot to me, and he did have a low grade fever of 99.9, which I was concerned about. But, the nurse reassured us that this sometimes happens during or after a transfusion, and that he was allowed to take two Tylenol when he got home. He was about to get angry with him about fussing about the fever, begging me to be quiet so he wouldn't end up staying in the hospital for two days! Instead, the nurse released us and told me to monitor the fever. Oh, the grief the caretaker has to endure just because you are trying to do your job!
While waiting around in the hospital room that day, I decided to call Dr. Eytan Stein at Memorial Sloan Kettering, even though I had been delaying the call until we had received the final results back from Cleveland. They were able to start a file for Todd, I answered all their questions, they told us which medical records were needed to be faxed, and anxiously informed us that the doctor had appointments as early as next Monday morning. I told them that we wouldn't be ready to come that soon, but that I would get to work in requesting the necessary records from both sets of doctors here in Dayton and Cleveland.
It ended up being a really long day (as always)! We made it home about 9:30 p.m. and found my mom there playing Wii games with our youngest daughter. (Thanks mom for entertaining and feeding her!).
We slept in late on Saturday morning and Todd felt well enough to have lunch with friends. They could tell his energy level and spirits were much increased from the last time they had seen him. I felt good that day too. I felt optimistic that this study drug would be a good choice for Todd. I pray it will be able to restore his blood counts enough to function without the need for transfusions, risk of infections, and eliminate his fatigue.
But, for the meantime, he has been taking naps every day, which helps get him through the day. I wish he had a better appetite, but I really can't complain. I keep asking if I can get a current picture for the blog, but he usually responds like, not while I'm laying down! (Vanity still there! ha!).
I was blessed to be able to work two days last week and I also received two calls for other jobs. When talking with our friends and family, most have assured me to continue to trust God's timing and not push things to the point of just making things more messy and stressful. Accepting a job that is not right for our family right now could be detrimental. I knew just talking to Dr. Stein's staff the other day, that no one knows Todd's medical history, his counts, numbers, conditions, tests, or the research in the field better than me right now. I'm in the best position to take care of him and its really where I want to be: by his side.
P.S. Talked him into it!
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