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Going backwards...?

posted Dec 3, 2013, 9:52 AM by FightingFor Mya

On Monday, Mya didn't eat anything, only had milk. I think her pain level was increasing for her. She is pretty smart, I get the feeling that she didn't want to tell us that she was hurting and needed help (medicine). When I came home last night, she was curled up with Ray and Gia on the couch. After awhile, I did get her to eat one meatball, but it took quite a bit of pushing, asking, begging, and cajoling. Afterwards, we got her tucked into bed with a FULL bag of liquid formula in hopes of keeping her weight steady.

Today, Mya didn't get out of bed on her own. Ray waited until 9am, then he went to GET her out of bed. Her gave her all the medications as well as her morphine because she was in quite a bit of pain. We are currently working with Dr. Chu & Dr. Manley to see if we can get the pain managed.

I've heard from a lady in the Radiology Dept. Mya has a 8am appointment at Brigham & Woman's Hospital on Wednesday morning. This is where she will go for her radiation sessions. The appointment tomorrow is so they can put her under anesesia and map out where they are going aim the beam of radiation. We will also be meeting with the radiology doctor, Dr. Marcus. We will be discussing when to start, the length of each session, and how many sessions she will need to have. We will also discuss what to expect in regards to effects the radiation will have on Mya. The start date of the sessions is up in the air. They are holding off on starting the session so we can complete our trip to Disney.

However, if today is any indication; we might not be able to go. Mya's pain level is increasing. We don't want to get on a plane and go anywhere if A)she won't be able to enjoy the trip and B)if she continues to degrade.

I know that people have come forward to help with costs for the trip. At this time, we will probably just book the trip and worry about sorting out the costs of it later.

We will watch how Mya responds to the increase of her pain and steriod medications today. If she is able to handle the increase and it doesn't make her too groggy or drugged out, maybe we will still go to Disney. The trip will be about 5 days in length. We don't think she would be able to do 7 days at this time.

I will post again tomorrow after our meeting with Dr. Marcus. By then, we will have a plan in place for the radiation sessions and we should know if we are going to go to Disney.

Thank you to everyone's well wishes and efforts to support our family in our time of need. We feel the love from you. Please know that we love you too.