The biggest news is that we are all home!
To catch you up...
Last Monday, while finally fever-free, Becca's ANC went up to 10. Though that isn't a lot, when it has been zero for several weeks, we got pretty excited. Traditionally, when her counts have started coming in, they have taken off like a rocket... needless to say, we were expecting that again. Tuesday, her ANC went up to 200, but then it dropped to 80 on Wednesday. We were quite crestfallen, as we wanted to get out of the hospital on Thursday. Luckily on Thursday, she hit 320, and Friday, she was at 620, so we were able to head home.
In more ways than just her counts, it was an up and down kind of a week. Becca was still confined to her hospital room for the first part of the week, as some of her test results were pending, but once she was able to leave her room, she went everywhere possible... PT, OT, the cafeteria and gift shop, the kitchen to get ice/food, and the playroom. After being imprisoned for a week due to fevers, she had severe cabin fever. We are worried that Becca's upcoming extended stay in the bone marrow transplant (BMT) unit is going to be quite a challenge, as she will not be able to leave her room for over a month. Now that she's had a taste of what is "out there," she doesn't want to go back. While still inpatient and waiting for Becca's counts to come in, we wanted to take care of as many of the tests that are needed pre-BMT before we were discharged so that we wouldn't need to come back during our hiatus. The pre-BMT tests she completed last week included an EKG, echocardiogram, GFR (poke in the hand with radioactive dye injected, then labs drawn every 30 minutes for two hours to measure her kidney function), a chest x-ray, and some special lab draws. Thanks again to those of you who provided bribes - many were used last week!
Speaking of the bone marrow transplant, we were able to talk more with our wonderful BMT care coordinator Sarah this past week, and she had some more info and dates for us. From all of the perfect HLA matches and KIR mismatches they found, several "prime cut" matches have been lined up for Becca, and the docs are quite pleased about this. Sarah described these prime cut matches as young men or women who haven't had children yet, so their bone marrow isn't as old or crotchety, and it isn't resistant about moving into a new "home." The metaphors that the bone marrow people frequently use is pretty humorous, but it helps us to make sense out of some things we never thought we would need to understand.
The tentative plan is that Becca will be admitted to the BMT unit on July 16, and her course of really mean chemo will begin that day. The time when she is receiving chemo is likened to tilling the ground and preparing the soil, in that the chemo will actually kill all of her current bone marrow in preparation for the donor's marrow. This will be followed by one day of rest, then the stem cell infusion (planting the seeds that will grow) will take place on July 26. We have heard that the infusion itself is pretty anti-climatic... it just looks like a blood transfusion for Becca (not a painful surgery). The stem cells are very smart, and they know to go to the large cavities of her bones and start growing. The next four to eight weeks (engraftment) will be a waiting game when the docs keep a close eye on how the marrow is doing to see if it is resuming its job of producing normal blood cells. Becca's body will be really susceptible to bleeding and infection during this time, as her immune system has been crippled by the chemotherapy. She will likely be receiving lots of antibiotics to prevent infection, platelets to prevent bleeding, and medications to control graft-versus-host-disease. As you can understand, we will really limit visitors during this time.
On Monday, Ethan and I will head to Children's to sign "consents" with Dr. Grimley, who is our new BMT doctor (we know, it's a very unfortunate name). Becca will have a lumbar puncture and bone marrow aspiration on Wednesday morning, as well as a full body CT (face, head, neck, chest, and pelvis) with contrast (peripheral IV required) in the afternoon. Thursday, we will go to the day hospital for a Busulfan PK study, which is a 10-hour long test where she receives a tiny dose of the chemo she will receive pre-BMT, and then they draw labs every half hour to see how her body metabolizes it. Becca didn't score well on the GFR she did on Thursday last week, meaning that her kidneys aren't happy. She is currently receiving fluids at night while we are at home, so hopefully her kidneys will bounce back. The doctors wanted to repeat the GFR this week, but since we are already heading to the hospital three days on our "break," we asked if the repeat test could be done the week before we come back instead.
The plan is to go north to the UP on Friday, 6/29, for a week to ten days of fresh air, nature, and time away from the hospital. Becca has been dying to go, as have the rest of us, and it has been the light in the middle of the tunnel that we have been moving toward these last few weeks. We hope to recharge our batteries in preparation for what lies ahead in mid-July.
Until then, we are just enjoying all four of us being together under the same roof. Many of you probably take that for granted, but I tell you, I never will again...