We left bright and early and got to clinic today by 7:15am, not even the nurses were there yet, so I guess that was a bit early. Hannah did get her blood drawn before 8am. We should have the results of her cortisol level tomorrow or the next day. I also asked for several other tests which we have run before to check various other things like her copper level (linked to blood vessel growth which can fuel new tumor growth), Vitamin D, inflammation level, and a few other things. All I will say about accessing today was that it was bad. However, right before the nurse put the needle in, Hannah got very quiet and still, knowing that it was best to be still. Last night she told me that it doesn't hurt when the needle goes in, she doesn't like it when she can feel the needle touch the back of her port. They have to do this to ensure it's all the way and can draw blood and administer the meds.
Unfortunately Hannah’s counts were down again. It’s not as bad as it could have been her red counts seem stable, only going down by a point or two, but her neutrophil count went down to 568, from over 700 (white cells). We don’t know why, her doctor is somewhat perplexed that she is not recovering faster. He is not alarmed since she is not crashing down, but he would normally expect recovery by this time. He decided not to put her on shots though, since the other portion of her white cells are holding and the count will hopefully start to come up by next week. That means no school this week, my prediction is she won't be there the rest of the month, but we'll have to see. We have to be a bit more diligent now also about germs.
Hannah's weight went down again this week too, not too much down to 20.8 kilos (about 46 pounds). The doctor did tell her today that if she didn’t eat well, and her weight kept going down, he was going to have to use the NG tube for feeding. She immediately started crying, but I think that is part of his strategy so that she’ll really try and eat. I know she’s trying, I know it’s so tough for her.
The anti-pneumonia drug was given today also via IV, and really made her feel badly before we left. She slept all the way home, and more when we got home, until 3 this afternoon (from 10:30am). She went to bed again at 9 tonight, so she needs her sleep. I told her tomorrow is homework day for us!!
Thanks for checking in on us,
xoxo Kim
2 comments:
Hey hannah,
You are a regular fund raising machine. Way to go. I have a few cans for you but will try to save more. Hope that you are feeling better today and we will talk to you soon.
Love,
Aunt Susie
Dear Hannah,
It sounds like Monday was not a good day for you at the hospital, getting up so early in the morning must have been very hard for you and Mom and your eyes must have been half closed when you arrived at the hospital. We bet Tod was waiting for you when you got home with lots of kisses. Don't forget that Riley loves you too.
Has your Mom given you a frappe? They are yummy. Here in Massachusetts, we have an ice cream treat with a mixture of ice cream, syrup and milk. I think down in Long Island, you may call it a "milk shake", but that is not the same at all as a frappe because a milk shake is much thicker than a frappe. YUCK About ten years ago, the man with all the hats you met in Boston at the proton center gave me a special frappe machine, but Mom can make you one in the blender. Every Tuesday, we go to meet our grandkids off the school bus and the first thing they have when they come home is a frappe. Our grandson, Jake, is the very same age as you, Hannah, and we tell him all the time about you. He wants to meet you. He is in the second grade.
Love, Judy and Dennis Griffin
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