Lifting Up Serenity

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.

The past few days have been a treasure. Serenity has been more like her old self than I had dared to hope for. I am glad, for so many reasons.

A few days ago I overheard my 7 year old tell her cousin how lucky she was to have a new baby sister. Her cousin said, “But you have Serenity!”

Gibson responded with a heavy sigh. “Yes, but every time I come near her she cries.”

It’s true. Up until this week Serenity has been very temperamental. She doesn’t want people to look at her, let alone touch her. But hearing Gibson’s words broke my heart. I hadn’t realized just how much Serenity’s behavior was hurting her siblings.

This week things have been better. She has interacted with her siblings, and laughed more in two days than I’ve seen all month. She has been a joy to be around and behold. She’s not 100% back, but she has been happier these past few days than I would have believed possible in such a short time.

Yesterday we got a fabulous care package from a very sweet mama and her darling girls. I can’t even begin to describe how much thought and effort went into putting this together, but there was something for everyone in the family. Even me. Serenity loves her new books and toys.

We spent so much time outside blowing bubbles.  It was adorable watching Serenity.  She wanted to blow them herself, so she would hold the wand right up next to her lips.  A few times she slipped it inside and then quickly realized that bubbles don’t taste good, not even a little.

In the evening Phil and I took the younger kids to the park.  We brought pizza and Sprite.  The children were pretty much in heaven.

We had another clinic visit today.  It went pretty well. I was concerned about Serenity’s port site because I had noticed it was puffier than normal, and that she had an accompanying swollen area on her back. The nurse practitioner who examined her said it was most likely fat that had accumulated in that area due to the steroids. You can kind of see what I mean in this photo:

See how the left side of her chest appears swollen?

Serenity’s lab results came back and her numbers were good. She has continued to build up white blood cells, red blood cells, and platelets over the past week. She did not have to have any chemotherapy through her port today, so our stay in the oncology clinic was shorter than in previous weeks. She still has thrush, so I was able to convince the doctor to prescribe me more diflucan. I took two pills last week, and Serenity has been on nystatin for a couple of weeks. I wish the nasty stuff would go away; it makes nursing so difficult.

After the oncology clinic, we headed downstairs to the Rapid Treatment Unit, where her spinal tap and bone marrow aspirate were to be performed. They let us carry her back and hold her while they pushed something into her port line, which made her fall asleep almost immediately. I always hate seeing her like that. Once she fell asleep they put a breathing mask over her face and we left the room. I went to pick up the prescriptions – almost $800 for 3 drugs! – and Phil went to the cafeteria to get us something to eat.

It was probably about 45 minutes until they came and told us that Serenity was waking up. I love being at a children’s hospital! The first thing the nurse asked me was if I wanted to nurse her. It helped to settle her down. She was groggy and probably in some pain, and just not a happy camper.

We waited a bit for her to wake up and then it was time to go home. It didn’t take long for Serenity to perk up and tell us she was hungry. (She can’t have anything to eat on the mornings of her procedures because of the anesthetic.)

Today was the last day of our first month of chemotherapy, referred to as Induction. I was under the impression that we were going to monthly visits rather than weekly, but that’s not correct. Next week we start the second phase of chemotherapy, referred to as the Consolidation phase. We will still be going in weekly. For the first three weeks she will continue to have general anesthesia and receive intrathecal chemotherapy (it will be injected into her spinal column). She won’t have to take any steroids this month, but she will start getting oral chemotherapy at home.

We were able to get all of our questions answered about her treatment protocol, the clinical study (which was closed, so we are not a part of it), and what to expect for the next month. This will be a rough month just like last month, especially with so many lumbar punctures, but it’s my hope that she will be better able to weather it without being on the steroids.

Today was Serenity’s last day of steroids this month. I’m very happy for her. I swear, I can see her face getting puffier by the hour.

In addition to being extremely moody and eating around the clock, her feet are very, very dry and scaly.

She tugs on her eyelashes a lot, which really bothers me, and she is sweating like crazy. She hasn’t run a temperature but she wakes up in the mornings and her clothing and the bed are quite wet. The first time it happened I thought her diaper had leaked.

She has a clinic appointment on Monday, with another lumbar puncture (spinal tap) to check for leukemia in her spinal fluid.  Aside from that, I’m hopeful that she will feel pretty good next week.  She will be off almost all of her medications until the end of June.