Yesterday Serenity cried a lot. I couldn’t tell if she was in pain and she wasn’t able to articulate what was wrong or what she wanted. She was also more lethargic than normal, so by late afternoon I started to wonder if she might need a blood transfusion. (She’s had them pretty regularly since getting her diagnosis.)
We phoned the hospital and they told us to take her to the local Emergency Department for a blood draw and lab tests. Then we would make the decision whether to bring her to Primary’s. We spent almost 4 hours there before being discharged because her labs looked alright. Several times during our time there I had to speak up to correct someone or suggest an alternative to my daughter’s care. Since I am usually shy & reserved it was VERY HARD for me to do, and I was so proud of myself for pushing past the discomfort to be an advocate for her. I am sure that someone probably wished I would be quiet and not know exactly what I wanted but I did and I voiced it.
Anyway, her labs and chest X-Ray were good (with the exception of an ANC of 0 – meaning she has no immunity right now) and so we went home. But because they had accessed her port (inserted a needle & line into the port-a-cath in her chest) she was unhappy and screamed and cried for a lot of the time. And then she threw up when we got home.
This morning I woke up with a headache and horrible stomach cramps. Throughout the day I’ve felt dizzy off and on. I don’t think I’m sick; I think it’s a side effect of a medication that I’m taking but I feel awful enough that I spent a lot of the morning in bed. This afternoon Phil had an allergic reaction to something so he dosed up on Benadryl and fell asleep.
Serenity has not felt well today. She keeps saying words that we can’t understand and bursting into a huge tantrum when we don’t respond quickly. (The steroids she is taking make her prone to mood swings and intense rage.) All day long we have been up and down, back and forth fetching various things for her trying to get her to stop crying. It is so heartbreaking because it is obviously very frustrating for her. At each meal she asks for 5 or 6 different things to eat and then hardly touches any. She complains that her tummy hurts, and her legs, and she keeps scratching herself when she gets upset. Tonight we gave her some Oxycodone thinking maybe she is just in a lot of pain, but I don’t feel like it helped a whole lot.
Hopefully tomorrow she will feel better but I wonder if this is just how it is to have leukemia. Maybe she is just going to hurt and be angry a lot of the time. 
Monday we have another visit at the clinic for more chemotherapy & blood draws. We have to go into the city early so I am dreading the long day already. It would be nice if we lived closer to the hospital.
I have been reading your story for the last few weeks and I just want to say I am so sorry you and your family are going through this. I know it isn’t something you ever think your child will get. I am so touched by your daughter and by your family. You have amazing strength. Please know that my family and I are praying for Serenity and your family as well. I hope Serenity feels better. Steroids are an awful thing. My nephew was on them for a long time and he would have “steroid rages” all the time. Lots of ups and downs. I pray for her health along with your family’s so that you may be able to take care of Serenity.
Have you guys had the time (I”m sure I know the answer) to find a support group online to maybe find out if Serenity’s reactions (mood swings, etc) are what other people have experienced?
So sorry you had a yucky day. Everything is harder if mom and dad don’t feel good. We are all praying for Serenity, the kids remember on their own.
Best Wishes,
Noreen