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Hard morning, meeting with Radiology

posted Dec 4, 2013, 4:48 PM by FightingFor Mya

We started our morning at 4am. Actually, we really didn't sleep that much. We had to get up around 1:30am to give Mya more morphine so she could go back to sleep. At 4am, we gave her another dose, then Ray & I started getting ready. We kept Mya in bed up until the time we had to leave at 6am. We kept her in her PJs. Ray had to carry her to the car because she was so dizzy and with a lot of pressure in her head. Ray sat in the backseat with her for support.

We got to Brigham & Womens Radiology department for our 8am appt. We met with Dr. Marcus. She told us that she wants to do 15 radiation sessions (not 30, whew!) and said they had an opening in the schedule next week. We told her that we were trying to get to Disney, but due to Mya's level of pain, we were going to wait on the trip. So, we agreed to start the radiation sessions next Wednesday. We will go to Boston Children's on Tuesday for a same day procedure to get another IV line put into her arm. This will be necessary because she will need to be sedated each day for her radiation session. We return to Boston on Wednesday for the 1st session. Our appt is for 11am, will take about 45 minutes to prep, radiate the tumor, then into recovery. All told, the whole trip will be about 5-6 hours. Because of this, we will go into Boston each day for the sessions. The effects of the sessions will be minor; possible hair loss at the site of radiation, tiredness.

After we met with Dr. Marcus, Mya was sedated and taken away. They created a mask for her. This will be used each time she has radiation. It will help the doctor radiate the same spot each and every time. The mapping didn't take long, then off to Recovery. Once Mya was awake, we went to Dana Farber to meet with oncology to address the amount of pain Mya has been experiencing. After examining her, they increased her steroids to 2mls, 3times a day and increased her morphine to 2mls, as needed. She seemed better this afternoon, so we are hoping the adjustment will work over the weekend.

We got home around 3:30pm and relieved my mom babysitting Gia. Mya did well, she even had some milk (1st food in over 2days). We got her into bed and she seems to be resting comfortably. Think we will give her another dose of morphine around 8pm to try to keep up with her pain.

We hope we will have a quiet weekend ahead. Will try to send out a post to let people know how she is doing in the next few days.

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