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Getting tired more...

posted Apr 13, 2014, 6:39 PM by FightingFor Mya

Over the past week, Mya has been doing alright. A few times, she spent the day with our neighbor who watches a couple children. She did well, but took a long midday nap on those days.

On Thursday, we went to Dana Farber for a check-up. Dr. Chu said that Mya's counts were good and that we are still on track to do her Mickey & her port for April 18th. It is a day procedure, so we will go in early in the am, then if everything goes well; we will be home around dinner time. (Recovery time, discharge, etc)

On Thursday night, Mya woke up in the middle of the night complaining of a nightmare. As Ray comforted her, Mya threw up. We immediately stopped her liquid formula got her cleaned up and comfortable again. Everyone went back to sleep. This was repeated on Friday night too. Nightmare, then getting sick. On Saturday night, Mya said she was having pain in her head. Similar to what she experienced in early December, before her radiation sessions. We decided to give her some Oxycodone to help with the pain. Mya was able to sleep through the night with no nightmares and no vomiting.

Sunday morning. Mya slept late (7am), but woke up with no pain in her head. Her appetite isn't great, but we are managing to keep her weight some what stable. We were visited by two little girls and their family. They had heard about Mya through her Facebook page. At their school, they were doing a fundraiser. Both girls decided that if they came in 1st & 2nd respectively; they would give the prizes to Mya and her family. Well, the girls won the prizes! They came to the house with 6 Boston Celtics tickets for Mya and our family! They also gave us a limo ride to and from the event. We would like to thank them again for their gift to us. It is wonderful to see children understand the joys of giving to those who are in need or who need help.

Mya was really tired from the day. After we had the girls at the house, we went to a friends house for a birthday party. Mya was so excited to go! That's one of her favorite things to do! She loves to sing the birthday song!!! After the party, we came home and got both girls ready for bed.

We hope Mya has a quiet night. We are going to send an email to Dr. Manley explaining the last couple of days. I hope he decides to move up Mya's MRI (currently scheduled for 5/28). I think something has changed inside her head. The symptoms she experienced & described were similar to how she was around thanksgiving. That was when the tumor was putting pressure to the base of her skull. We feel that her fatigue is also a big part of what is going on as well.

We will watch her closely over the next couple of days to see how things go. Will post again soon.