Well the prepared us for being at the clinic all day today, but were back to the apartment by 11:15am (we arrived at 7:30am).
The morning started with having to wake up MJ at 6:00am. She slept very poorly last night because of the steroids she is on. They make her hungry and unable to sleep very well. She wasn't too happy about being woken up :)...
We had to take off her bandaids around her port-a-cath site in order to put the Elma cream (numbs the site). She didn't want us to do it. She did it herself. Then she took her meds. She is amazing. She has decided she would rather swallow the pills rather than have them crushed and in cherry syrup. SUCH a big girl. This will make the next 2 years of medicine taking soooo much easier on her... and us.
Her blood counts were SUPER good today. The number we really look out for is the ANC. This number basically tells us how well she can fight off infection. This is one of our major sources of worry right now. Infection. A normal ANC is around 1,000. Madelyn's while in the hospital was around 150. Below 200 we have to be very concerned and careful and she is automatically put on a broad spectrum antibiotic - everyday. The day we left it was 217 (hooray!) and today at her blood draw it was 435 (hooray, hooray, hooray...). She can't attend school until her ANC is above 500. However, unfortunately it's not looking like she will be able to rejoin the San Juan Montessori for the remainder of the year since we have to be in Seattle for about 6-9 months.
Her Port was "accessed" for the first time today. This was very scary for her and she cried and screamed. Never one to be shy about how she is feeling; somehow I am proud when she screams. She's just not afraid to let everyone know she hurts, is scared and doesn't like it. This will get easier for her as they will be accessing the site 1-3 times a week. The cream numbs the area so she doesn't feel the needle going in... but it's still scary.
She is always nervous going into the procedure room. She likes to sit in Daddys big strong arm and have me read her a book to distract her. She was just happy as a clam as she woke up and could - FINALLY - eat! She was great until we got home. She ate lunch and then started to feel nauseated. She is taking a nap now with Peter and I suspect she'll sleep a long time.
We won't have the results about whether she is a Quick or Slow Responder until Tuesday next week unfortunately. The nursed clarified for me that she is Standard Risk... but now we are just accessing whether she is responding quickly or slowly to the chemotherapy. If it is slowly, she will start a more aggressive chemotherapy.
Tomorrow we are having a Thanksgiving dinner for Madelyn at lunch time. We are keeping it small since she will not be feeling too good: Grandma Terry, Granpa Jim, cousins Lucas and Becket and Auntie Jill and Uncle Emmett will be there.
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