We went in this morning for another CBC and while she is still very low, her Hematacrit actually went up a little. So again, no transfusion. Yay!!! She has some mild symptoms of low red-blood cells, but nothing major. A little tired, a little pale and a little dizzy. But she still ran all over the yard when we returned from the hospital today. She still played "game" with Sophia (this is where they are each an animal and they talk to each other) and still had a big fight with her over how to cut the grass with scissors. So the nurse de-accessed her port and we will go in for another check on Monday and Thursday next week.
We also had a doctor's visit today. Th doctor was amazed that I didn't give MJ any pain or nausea meds last week during her ARAC chemo. She received a dose before the infusions each day, but she did not need anything other than that! She ate well and was in great spirits both this week and last week. She has even started to drink milk again and is not obsessed with corn anymore. Those were the only two main changes we saw in her eating habits the last few months.
This week and next week are scheduled chemo rest weeks with the goal for her counts to rebound. May 31 will be her first day of Long Term Maintenance. To start on time, her ANC will need to be 750 - currently she is at 200. If she starts on May 31 - we can go home June 1, 2 or 3!!!!!! We all can't WAIT to be home. Madelyn has been drawing houses constantly the last couple of weeks. I guess she is telling us something.
We spent most of the afternoon yesterday at Magnuson Park. It was a beautiful day. A couple of young girls spread out their blanket close to us and Madelyn inched her way away from us and towards them. Madelyn just loves talking to people. Eventually she was sitting on their blanket conversing and laughing. Peter and I tried not to interfere until she was firmly established in their sphere. It's such a marvelous skill she has with people and a joy to watch. She is not bashful or reluctant. She is sure of herself and generally un-phased by others.
Especially now, she has grown-ups and children stare at her. Sometimes I want to scream "Yes, she's bald! Yes, she has cancer. Go about your business people." But only on my bad or exhausting days. I know most of those people are looking at her and thinking "poor sweet honey." It's good for strangers hearts to be squeezed and reminded of bigger adversities.
Madelyn has had kids come up to her and say "how come you have no hair." Her response is. "Ya, because I have Leukemia. The medicine makes my hair fall out. But it will grow back. I think it will be dark like my Daddy's and curly like my Mommy's when it comes back." It's all very matter-of-fact and calm. She just loves that someone has come over and talked to her. Timid, ashamed or reserved are NOT words I would EVER use to describe MJ. She is the complete opposite of those words. She is determined, opinionated, self-assured and not afraid. She is not afraid to scream or laugh or ask questions.
Peter and I laugh because our doctors and nurses always ask us how Madelyn likes things to be done. We also respond: "Ask her." Because let me tell you, she will be sure and tell ya. And I love that. Yesterday she decided she wanted to take the tagaderm (the big sticky thing that keeps the needle in place and protected) off her port all by herself. Luckily at Children's the nurses are wonderful and patient. It took about 10 minutes longer but who cares. You go Miss MJ.
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