Last Wednesday night I thought about what helps me feel good at night, and warm baths came to mind. I suggested one to Nadine, poured a nice one, supplied a favorite soap and bath "puff", and lo and behold, she smiled in the tub and was a happy girl. She was able to sleep well. unlike the night before.
Thursday was The Last Bigg Chemo of the spinal injection series. Early-morning was frazzled. No eating in the morning meant a very hungry Nadine; it had been a late night; I got up and had maybe 10 minutes to leave the house; I felt so dirty I had to shower anyway; we left late; we had to stop for gas; I didn't know where to get gas. Amazingly, we arrived only about 5 minutes late -- no problem. Whew.
Dr. Mullen, the head of the pediatric oncology department, examined Nadine. Her blood "counts" had dropped sharply but weren't abnormal; soon she'd probably be "neutropenic" (very low white blood count-- neutrophils in particular), which isn't uncommon during a chemo cycle. The cycle begins with a large chemo dose; blood counts generally drop (red bloood cells, white blood cells, platelets)as the chemo does its job; Nadine has to be extra infection-and bruising-shy and sometimes needs a transfusion, eventually the counts rise again as her body makes new cells, and if the count is high enough the next scheduled big-chemo-dose happens again.
The new prescription medicine helped get rid of the heartburn. Yay!
Dr. Mullen did the final chemo injection in Nadine's spinal cord. I was used to Margaret or Laurie (the nurse practitioners) doing it. I got seated with a better view than usual, and got to see every detail. It took Dr. Mullen two tries to get the needle in but Nadine's spinal fluid (this is not abnormal), and her spinal fluid dripped out agonizingly slowly (I was told this could happen after repeated procedures). The medicine was injected in and it was done.
BYE BYE BIGG CHEMO. All done!
Margaret came in with a timely talk about how Nadine might feel really bad these days, worse than in the hospital. This was strangely reassuring, as it meant that discomfort, awful as it is, doesn't necessarily mean something major is wrong. She described asparaginase iss "not nice". She said that at some time Nadine might want to give up on chemo, and that if this happened, neither her mom nor Margaret would let her. This knowledge, plus the info from Eric that at times she might seem young, helped me feel better about handling this miserable situation.
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Later that aftenroon, we visited the apartment at the Kanack School of Music that Alice offered us for the month of August . The school is a large and barn-rust-colored house with a white picket fence and gardens. The kitchen has a sliding door to the gardens, and there's a hammock. The performance area is two or three stories high, huge, with a stage. More on this later.
There's a piano in the kitchen, and a piano in my bedroom! And music-motifs all over the place.
Alice gave us The Tour, and apologized for not having more supplies for me. I can bring cookware, etc. She has two beds there, one in each bedroom.
Living at a music school! Waht a treat.
There was a lovely sign up, "Nadine and Barbara's Summer Home". Perfect.
Nadibne, in one of her beautiful scarves that Lauren Sample hand-dyed for her, was set up lying on the couch in the main performance room, looking cozy. She wasn't up to walking and looking around, but was still so sweet!
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After we returned to Webster, there was a special visit from Rachel Bell with gifts from Ashokan. It was so special that it's getting a special post!
I cooked rice for dinner. I spoke with Yvonne, a mother I'd met at the hospital, who lives in Rochester. Originally, Erek had met her jovial husband Jim in the hospital rec room. Her daughter, about Nadine's age, was in the hospital when Nadine was; each girl had made a bracelet for the other. The girl had made a beautiful drawing of flowers for Nadine, who couldn't have real flowers due to fungus risk. Now both girls are out; Yvonne and I hugged when she got out (shortly before Nadine did). Their family had suggested a visit, to which I look forward.
Nadine rested downstairs, and seemed weary. She wanted me to stay down with her, and I assured her that no matter how long it took to deal with the leukemia, even it was 10 or 20 years, I would be there for her.
We spent a nice evening with a dinner of chicken, rice, zuccini (from Betty's garden) and a light sauce. Nadine wanted to go to bed early, and I welcomed it, even though I had to scramble to get all my work done. Nadine had another bath, and we had the second easy night in a row.
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