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Friday went well, Saturday too

posted Apr 21, 2014, 5:07 PM by FightingFor Mya

(originally posted 4/19)

Mya started her day of procedures at 7:30 am. Which meant we had to be there at 5:45 am, which meant we were up just before 4 am. Her surgeries started on time and went smoothly. She came out around 10:30 am and went to recovery. As usual, she came around quickly from the anesthesia and we were able to leave. Got home around noontime. For the rest of the day, Mya was sleepy and was hanging on the couch. We got her medications into her early and got her tucked in. She had a quiet and restful night.

Saturday (today), Mya was up around 7am. The doctors told us to keep her on the couch. Well, that proved to be quite difficult! She got out of bed on her own and walked to the couch. Ray & I couldn't believe it. We fully expected to have to carry her around for a few days. That doesn't appear to be needed. For the last half of the afternoon, she begged and pleaded with us to take her outside to the playground. We told her that we would get in trouble with the doctors! Small white lie, right?? We are just trying to give her body time to heal. We don't want the stitches around her port (in her upper chest), to come loose or even out.

We can see that she has lost weight, so we took advantage of the fact that she had to be on the couch. We had her on liquid formula all day and we have her on it all night. We are hoping to gain some of those pounds back.

We will go back to Boston on Thursday. They will check on her port, her Mickey, and where her PICC line used to be. She will get an MRI on this day. I thought it was on 5/7, but they've moved it up. As always, we are anxious to see what is happening inside her head and spine. Once completed, we will get a call to discuss the findings. This will tell us if the current chemo drugs are working, if we would try different ones, or if another round of radiation sessions are an option.

We hope everyone has a happy Easter. Give your loved ones a big hug from the Bedards!