Wednesday, December 20, 2017


Waiting for Methadone

So Taylor has been having lots of headaches. They haven't been going away and she is really super frustrated. She has become increasingly frustrated with taking medication that "doesn't work". Yesterday was the last day of Radiation Therapy.

Monday she was unhappy after radiation. I kept sending silly videos and messages, and she seemed to slowly get out of her funk. We were having Mike's birthday at our house (My husband's eldest son) and they were invited to come. At first (earlier in the day) Taylor did not want to come, but she changed her mind and was excited to come. She kept texting me when I would be home so they could come over. Unfortunately as it got close a bad headache came on and she wasn't able to come. I sent her birthday cake though, which she ate even though she had been saying she was nauseous.

Yesterday after radiation, she headed to Stollery to meet with the assist team at her oncology appointment to see if they could get her headaches under control.

The day started bad, Taylor was in a miserable mood. She did not want to go to radiation, take her meds, no smiles or happy coming from her. She didn't even want Mindy or Landon to touch her-extremely abnormal. I sent her some goofy videos and pictures throughout the day, but she was pretty miserable. I think she responded that I "was ridiculous" LOL, which is a normal response to my antics.

They were in the hospital all day waiting for the doctors to get her Methadone, as that was what they wanted to try next to see if it helped the took hours! After such a horrible day before I had really hoped things would have been better for her, but nope! Apparently it was a lot of red tape as its more outpatient, so they had to fill out a bunch of forms to get it in the hospital, etc. Then they had to wait after it was administered to see how she responded as its a finicky drug to administer, etc. It did not help, so they increased the dose.

Finally leaving the hospital

So it was a long and horrible day. Taylor was really, really angry by the end of it. I did go and see her, let her complain to me and hopefully I validated her feelings. She was just so miserable, which is so different than her normal self, but then all she is going through and all the headaches is more why this is happening. I tried to refocus her on what was the good things, leave all that bad stuff behind. SO we went through repeating some good things in the day: ice cream, never having to do radiation again, donuts earlier, etc. She seemed to perk up a bit and stop her angry tirade while we all played Uno. At 8:00pm she gave me the heave-ho, by handing me my car keys, LMAO. Totally understandable.

Today I hear she is still not happy. She is continuing to refuse to want to take medication. I am hoping she will start to feel better. She says anyone who visits "NO BODY CONTACT", so remember EVERYONE, that includes family, Grandmas and Nanas, Taylor does not want to be hugged or touched. Give her that. I'll give you a hug if you need one, but don't bug Taylor!

1 comment:

Kathy Martel Sileno said...

The poor kid - this just stinks. My heart breaks for her and for all of you. So frustrating not being able to make things all better. I so appreciate your updates as she is on my mind a lot. We know the horrors of ependymoma. My love and prayers are with you.