A few months ago, I looked at Fiona and just decided I was tired of her being bald. We had been doing pretty intensive chemo for about 8 months. We were set to start Long Term Maintenance. This involves only one trip to Children's and then a bunch of pills that I deliver at home. It sounded pretty easier. Certainly easier than a half an hour ride to the hospital every week, at least 4 hours for the appointment and then dealing with the after effects of the chemo. Not to mention the planned hospital stays that lasted 4 days each and included Thanksgiving and the day before Christmas Eve.
So, when we found out that the drugs she would be taking from now on wouldn't include anything that would automatically make her hair fall out, I wanted all of her hair back. Kind of an instant gratification sort of thing. Her hair isn't totally cooperating, but it is growing in nice and thick and soft. We are still waiting for some sort of curl to show up. When I lost my hair , as a child, to chemo, it turned my basic brown, straight stick hair, into something that can only be termed bendy and has gotten progressively darker with age. Everyone calls it black, but I am not entirely comfortable saying it's black, although I guess it is black enough for someone who wildly pale. I just want people to stop asking me if she is a boy or girl. If I were to dress a boy the same way, I could be prosecuted for child abuse! But people can't always tell.
This is the week that we are going to the hospital. I have a plan to take on this week. I am making freezer meals, stocking up on salty foods that might tempt her and lots of library books for us to share. I spend at least 4 hours a day just taking care of her, be it feeding her nine times a day, rocking her when her stomach burns too badly, letting her soak in the warm tub, while I read to her, because her bones ache. It's pretty tough on her. It's pretty tough on me. She takes pills daily through Monday, mostly steroids, which cause all of the pain, that and the injection on Thursday. I'll let you know if my being prepared helps at all.
It's going to be interesting dealing with this for the next 15 months until she is off chemo. That includes her full year of kindergarten.
2 comments:
Yeah for hair! It's amazing that we spend so much time washing, conditioning, drying, straightening/curling, cutting, growing out, coloring, highlighting, lowlighting and adorning the stuff. Remind me again why hair is good? But when you don't have it is when you want it. It's such a remarkable sign of health. I'm so happy for Miss. Fiona and for all of you that you can celebrate this milestone.
You are an amazing mom. Steroids do crazy things to kids' personalities and it takes the patience of Job to remain sane. After seeing the changes to their appetite, body and mood, I haven't a clue why anyone would want to take those things if they didn't have to. If I can do anything for you, please call.
This Mother's Day must be so special for you. All my best!
I bet that cute fuzzy head is fun to rub! I have to tell you that every time I read about what you are going through, I think two things. One, you are a hero. You deserve tons of credit for being so positive, so organized, so nurturing, and so much more. Two, I need to quite complaining about the minor annoyances in my life. Thanks for helping me keep things in perspective.
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