While we were gone

I am posting this now but will probably back date it so that things make more sense in the future.

I know many of you were looking for updates over the past month while Clara was at home. We were trying to return to a bit of normalcy and ignore the fact that we would be returning to the hospital at the beginning of the year. Part of this was our constant putting-off of any blog updates. So, sorry for those who were hoping to hear what was going on and I will be making a brief post to cover what happened in the month of December.

Clara came home after her lung surgery on November 26th. She had to go to the hospital every day (except Sunday) for one of her fungal medications (amphotericin) that needed to be monitored as it was administered. Each night she received another fungal medication (mycafungin) through her IV line at home using some sort of "gravity ball" but I think it uses pressure to deliver the medication. She was also receiving daily doses of a chemotherapy drug called tioguanine to help keep the leukemia at bay while allowing her to fight the fungal infection. She also had two short rounds (4 days) of cytarabine (this is the one she has had before) to help keep the leukemia down.

Unfortunately, the last round ofcytarabine knocked out her immune system too much and left her neutropenic. That is, her neutrophil count was getting toward a more dangerous level and she was at higher risk of infection again. After this, we stopped all of the chemo treatments to let her recover (which she did) and didn't have any chemo through Christmas and New Years.

Right before Christmas week, our garage flooded pretty badly. We had finished the garage with paneling and carpet and were using this area as my home office, laundry, storage, and had planned to use it as a play area before Clara got sick. We were able to get everything dry pretty quickly and nothing was damaged. Our landlord immediately had people working to drain the water away from the garage and has some more long-term plans that she will be putting into effect soon. Unfortunately, we discovered a little patch of mold after this so we had to keep Clara out the the garage to keep her safe. We will be having someone come and test the house to make sure that it is ok for her to live in after the transplant while her immune system is weakened. Out landlord has already assured us that she would be ok with a move out because of the water issues that the property has been having.

So the plan for the transplant will be to go to the hospital on January 2nd and to start drugs to help alleviate some of the reactions to the chemotherapy that she will be getting. Then the 4th-7th she will be getting a drug called Busulfan and then the 8th and 9th a drug called cyclophosphamide. She will then get a day or two of rest and then the transplant on Tuesday or Wednesday (probably Wednesday) depending where the donor lives. We can then anticipate a few weeks of waiting for the new marrow to take hold and start producing it's own blood cells. During that waiting we have the risks of negative effects of the chemo on her liver and kidneys as well as risk of infection from new sources and the current fungal infection that she has. After the graft takes place we have risks of Graft-versus-host disease which will hopefully be minimized from the good match. Wish us luck!