This is Day 6 of my baby, Serenity, being diagnosed with and treated for Leukemia. Day 5 is here.
Goals for today were:
- No puking… check
- Take oral meds better….check
- Eat some food….check
Other than some cancer specific issues, there was a lot of happiness in our hospital room today. The “Child Life” group brought teddy bears to everyone on the floor. The above picture is of Serenity snuggling with hers.
This afternoon we played a game with the surgical gloves. I would blow the glove up and keep it on my mouth, she would grab a finger on it and pull it lose so it would shoot across the room. She actually laughed, several times!
But fun never lasts for very long around here and this time it was being interrupted by the nurse bringing in more meds for her to take. She spent a lot of time playing with all her toys and was just happy doing that.
Several times today it was easy to forget that we’re here fighting cancer, but that is short lived because there are just too many reminders. The doctor started her on a new anti-nausea drug, Zofran, today and it made a huge difference! She didn’t puke a single time today, even with getting her chemo treatments today.
So, what are the reminders that she has Leukemia? Well, besides the really obvious, if you’ve noticed, in every picture I’ve posted of her she is laying down. There is a reason for that, Leukemia ravages your body and can cause huge amounts of pain in your bones. For Serenity, that is all focussing in her legs. She can’t stand up, when she does she cries in pain. She hasn’t stood up for almost a week now. Not only that, but she can’t leave her room – at all. She is allowed to leave if her ANCs, which is a measure of white blood cells, are above 500. She can’t leave the cancer ward until they are above 1,000. For a healthy person, that cound is 7,500 – 10,000. Serenity’s ANC count is 100 which means her immune system is pretty much non-existent. Not only that but it has been at 100 for the last 3 days. It’s supposed to increase by at least 1o0/day. Going home means leaving the Cancer ward which means she has to be at 1,000 in order to go home. We’re concerned that that isn’t happening.
She also had to get an intra-muscular chemo treatment today. They came in and shot it in her thigh muscle. This particular med burns badly once it is in. Serenity cried in a way that we have never heard her cry. It was awful. Then there are the oral meds that she has to take pretty much all day. I think she is on about 20 different drugs, more than half of which is taken orally. She HATES taking oral meds, fights it like crazy. Yesterday when I was giving her one, she was screaming at me (like every time), she looked at the syringe, looked at me, looked back at the syringe, reached up and pulled out the plunger from the syringe! It’s a fight every time we have to administer oral meds and it usually ends up with about a fourth of the drugs being on her shirt, on my shirt and on my face.
She has also made some interesting adaptations. She now pretty much seems to think of her IV line as part of her. Whenever she moves, she keeps an eye on it to make sure it doesn’t get pulled tight. When the nurse comes in to take her vitals and gets the blood pressure cuff down, she lifts her arm so they can wrap it on. She also points with the finger that she wants the oxygen sensor connected to. She is quickly becoming a child who is adapted to being a hospital kid.
That’s pretty much all for today. It was mostly non-eventful, thus a rather short post. Hopefully tomorrow is a relatively easy day as well and another short blog post.
UPDATE: Day 7 is here.
The story of Serenity’s battle with Leukemia begins here.