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MRI = long day for all

posted Jul 10, 2014, 6:16 PM by FightingFor Mya

We got ready and were out of the house by 6am. Dropped Gia off at a neighbors, then hit the road. Not a lot of traffic, so we made it into Dana Farber in plenty of time. Got Mya's port accessed for the MRI and had her weight done (15.75 kilos, yes!!).
Then, we went to Radiology for the MRI. We were on time, but the patient before us needed additional scans done (never a good sign). So... Three hours later, yes that's right, three; it was finally our turn. Mya was sedated and taken in. Ray & I went to lunch and waited for her to come out into Recovery.

Well, the scan went a little long, but not terribly so. Mya made into Recovery around 1pm. We got her awake, had her drink some juice. Got her dressed, in the stroller, then took off for Dana Farber to go meet with the doctors to discuss the initial interpretation of the scans.

We waited for a bit. Then the door opened and Dr. Manley, Dr. Chu, the child psychologist, and Mya's regular nurse came into the room. (Bad sign!!) they told us that the tumors in Mya's head are a little bit more defined and the tumors on her spine are bigger and are now pushing on her spinal cord. These are the ones they are really concerned with. If we don't do something about the spine tumors, Mya could lose the use of her legs, her bowels. She could become paralyzed. They said that chemo shots to the spine aren't applicable. So, the doctors want to talk about doing radiation to her whole spine, not just the trouble spots. Their want to give Mya the best quality of life possible. So, they are going to discuss the scans with Mya's radiation doctor from last December, to see what she wants to do. They even talked to us about doing another targeted radiation blast to Mya's head, but they were unsure how that could be done and still avoid the area that was previously blasted. You can't receive radiation to the same area twice, I guess. The doctors will talk to the Radiation doctor about this as well.

So, it was difficult to hear the news, but it also wasn't completely unexpected. We've been noticing the changes in Mya's walk for the last month, so we knew something was going on. The doctors want to start soon, maybe by the end of July. We need to get a move on in getting out there and maximizing the couple of weeks we have before they want to start the session. Right now, we don't know how many sessions she will have to do. It could be 15 or she might have to do as many as 31.

We should hear back from Dr. Chu the beginning of next week about the suggested game plan. Our plan right now? We're going to the beach on Saturday to have fun in the sun. I hope Mya sees a crab, they make her giggle!

Have a great weekend everyone, that's what we plan on doing!

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