Our appointments went very smoothly today. Out the door with both girls at 7:45am. Port accessed for blood counts at 8:00am. Starbucks. Princess Belle and the new Puppy twice. Exam and CBC review with doctors at 9:15am. Infusion of two types of chemotherapy at 10:15am. Back to the apartment by 11:30am. Made grilled cheese and soup which were passionately rejected by both girls. A bowl of mac-and-cheese was produced and received greater approval. Followed by play, play, play.
I am still amazed by this girl. She had two types of chemotherapy today. The nurses were telling me we would need to give her anti-nausea and pain meds by bed time. Nope. She was busy, happy, eating and drinking like a champ and tantrum free all day. No upset belly. No pain. Madelyn and Sophia had several very long play periods - just the two of them, no fighting. One of these were after their baths. It included about an hour of nude princesses. That's right. Picture it. Little cuties running around with tiara's, wands, high healed shoes, necklaces, bracelets, sunglasses and their birthday suits.
Part of MJs chemo session included a one hour infusion of fluids. One of our doctors found us in the infusion area and said they discussed this.... because Madelyn is so good at eating (veggie girl) and drinking - no one hour sit for us today! I turned off the TV and told Madelyn to listen to the doctor. I made him repeat the information. Madelyn drank like a champ today.
I was expecting some trouble walking by the end of the evening, but none so far. We'll see how she does tomorrow and in Physical Therapy. She hasn't had Vincristine for three weeks now so maybe it has more of an accumulative effect. She'll have it every week for the next 8 weeks so we will most likely be seeing troubles walking again.
Her counts were overall pretty good and she was able to enter the next phase of treatment today. Interim Maintenance. This will last 8 weeks and she'll have chemotherapy approximately every 10 days. White blood cells are pretty low and platelets and ANC are lower than last week. For a person with Leukemia, these are good numbers though.
Hematocrit 36.8 Platelet 254 WBC 2.4 ANC 1140
On the personal side, it was a hard week for dealing with the girls difficult and unreasonable behavior. I am still hitting the parenting books hard. The doctors are recommending contacting Child Life for more reading and therapy recommendations. We're trying not to jump in too soon... the books have a lot of good suggestions. A few I have already seen help the last couple days. I keep thinking, lets just give our selves a little room to be irrational. All of us. All four of us are going through hard transitions and emotional adjustments.
Interim Maintenance (next 8 weeks) will be a relatively "calmer" period for Madelyn's treatment. We have decided to take a few sanity days now. Peter went skiing for four days with a guiding buddy and I will take the same time in a few weeks. My Dad helped me at the hospital today and was able to see "the process." It feels like we are starting to find a rhythm with the back and forth between towns. A treatment rhythm. It's just the everyday life rhythm we haven't got figured out yet.
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