Our appointment was rescheduled from Friday to Tuesday because there is a shortage of chemotherapy drugs nation-wide. So today we our appointment was at 8:30 am. When we got there they accessed her port and checked her blood counts. Her white blood cell counts are at 2,570!!! That is a normal range, so the doctor said that she can go pretty much anywhere and no special restrictions until Friday! (thats when they are going to check her counts again.) They went up so much because she's had such a "big" break from the chemo. I'm so glad that she gets to see the Easter bun!! Hopefully it will be nice weather so we can actually go to the park with other kids! The doctor said by next Tuesday her blood counts will be on the way back down again from the chemo and she will be on restrictions again.
Her procedure went well. It was very different from the past procedures in that I was in the room with her the whole time, it was done at the clinic, and different anethesia (fenanyl and versed ,one is a pain med. that causes drowsiness and the other is the sedative)They told me that most kids go right to sleep. Isabelle laid on her side while they put chemo in her spine, but chit chatted the whole time. During the whole procedure she did not stop talking once, her eyes were open, but she seemed as though she were seeing double. The doctor said they're not usually, so awake seeming. The procedure took about 15 minutes and was done as she laid on her side. The doctor injected the chemo into her spine, while the nurse made sure Isabelle didn't move around a lot on the other side. 15 minutes after the procedure was complete Isabelle wanted to get up and move around, but they said she had to wait a whole 30 minutes.
After the procedure we went to the back area where Isabelle had to get fluids to hydrate. They then gave her the chemo that is just a push in her tube. We had to stay until 3 because they had to make sure that her kidneys were going to be ok and had to push a certain amount of fluid through her system. They said this was to make sure the stomach lining and kidney lining did not get too irritated by everything. They had to keep track of her urine while we were there, so I kept having to put gloves on and catch it in a cup. At one point there were 7 or 8 doctors/nurses in the hall having a little meeting in the hall. Isabelle noticed it immediatly after she went potty and she had to get their attention. She said, "Excuse me, everyone, I went pee pee and its right here for you!!!!" They all laughed, clapped, and cheered for her as she walked back to where we were sitting so proud. While we were there I don't think she stopped talking once. She was very hyper and at one point I was chasing her around with her IV pole trying to make sure she didn't yank her port line out!! I was glad that she was feeling so well. There was an art therapist there that also helped Isabelle paint and color. She really enjoyed that. A few times at the clinic she put her hat on and became upset. She told me that I can't look at her bald. (We normally take the hats off once we are in the clinic) She doesn't seem comfortable taking her hat off in front of other people who don't have hair loss.
As far as the chemo shortage, the only thing it affects is their protocol. Any chemo that has to be pushed in her port line has to be administered there and can not be given at home. She has to go in Wed. and Thurs. at 3 to get her "push" and Friday at 12:45. Abel still has to giver her the pill chemo everyday.
Mercaptopurine or 6 MP- This is the chemo pill Abel has to give Isabelle at night. It has to be given on an empty stomach, at least 1 or 2 hours after food. We can not give it in citrus or dairy products. She basically has to have the pills crushed in apple juice or water. The most common side effect with this chemo is low blood counts.
Cytarabine or Ara-C - This is given 4 days a week with a little syringe push in her port. Common side effects are nausia, vomiting, loss of appetite, diarrhea, low blood counts 1-3 weeks after treatment, and mouth sores.
We went out to eat to celebrate this evening and when she took her hat off in the restaurant, she put it back on a few minutes later. I don't think she felt comfortable, but I don't think she noticed anyone staring at her. It wasn't so much the adults, but the kids. The adults would kind of look and then immidiatly shy away and tell their kids to stop staring. Isabelle hasn't wanted to wear any wigs because they kind of scare her. Her favorite hat is her strawberry shortcake hat.
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