This has been our week “off”, and it’s been nice. Off meaning that Serenity is only taking Prevacid and Nystatin. She has been a joy to be around. She laughs a lot, she plays silly jokes on us, and she has started trying to stand up. She can’t stand for more than a second or two, but she has started crawling again so she can move around of her own volition now, which makes her happy. Instead of sitting on the bed in the front room all the time, sometimes she will slide off and scoot around to interact with the twins, or to get a specific object. We are hopeful that she will be walking again soon. (And I am hoping that this month’s chemo doesn’t cause her legs to start hurting again.)
She is losing a lot of hair. You can see her scalp now and it reminds me of a little old man. She still has enough hair that I am reluctant to shave it, but she is shedding everywhere. I suspect that all of the hair is dead, and it just hasn’t all fallen out yet. Anytime we run our fingers through her hair we come away with a lot of hair that has fallen out. Whenever she is upset she grabs fistfuls of hair, which is distressing to me. I know it doesn’t hurt her (because of how much I can get without having to pull hard at all) but it still seems so unnatural. We have family photos scheduled this week and after that we will talk some more about shaving her head. I am hesitant to do it until she has more scalp showing than hair, but it would make the hair mess that is everywhere easier to control.
Serenity was supposed to have a blood draw today from Home Health care. The hospital told us last week that they would set that up. We have an appointment at the clinic tomorrow morning, so the hospital told us to call before we came up to make sure that her numbers were high enough that we could proceed with the next stage of treatment.
On Friday I phoned Home Health just to make sure that the blood draw had been ordered. The person I spoke with told me that we were scheduled for July 6, but nothing had been set up for June 30. She advised me to call the hospital and have the doctor call with orders for the blood draw. I called the clinic and explained the situation and the person I spoke with told me that he would give the information to a nurse. Phil called Home Health Friday afternoon and the person he spoke with said that no one from the hospital had called with orders for the draw. She said they had called the hospital themselves and asked that the oncologist on call call them back but no one had done it. She went on to say that it wouldn’t do any good to draw the blood on Sunday because the lab was not open over the weekend, so there would be no results by Monday morning.
Our plan is to go up to the hospital 30-60 minutes early on Monday and explain the situation, and have them draw the blood there. Serenity is scheduled for a spinal tap with intrathecal (in her spine) chemotherapy. Then we will go home with oral chemo that she will take twice a day at home.
I have been reading some articles about the oral chemo she is supposed to take. Some hospitals are testing for a specific protein in the blood before administering the oral chemotherapy, in case the dose needs to be adjusted. I plan to ask our doctor about that, but I don’t know whether they will agree to it. It’s a weird situation to be in. Phil and I are reading as much as possible in order to understand Serenity’s leukemia, and the tests and treatments that go along with it. I wonder how her doctors feel about being questioned or even told that we think they should do their job a particular way. Of course I am confident that her doctors know what they are doing, and that they are working hard to cure her cancer, but I also know that it is possible for a doctor to not know everything in their field. I belong to a email list comprised of parents whose children have ALL. I have learned so much from just a few weeks on the list about the variation in treatment protocol in different parts of the country. There is not just one way to treat her cancer, and while we are following the most common protocol, there are differences in almost everything depending on the facility or even the physician.
I look forward to Mondays because I get to spend so much time with Serenity and with Phil, giving her all of our attention. At the same time Mondays are difficult because there is a lot of crying (screaming) on her part, and it is a long day for all of us.