Wednesday, December 13, 2017

Disney Cruise Update

So Landon, Mindy and Taylor are back from their trip. I know a lot of people were eager to hear about the trip, however, it wasn't as much of a dream as was hoped for. I am not saying it was horrible, it just did not turn out how everyone had dreamed.

We have to remember that Taylor has always thought she liked crowds and fun, wild parties. Taylor does not. She has always gotten a little overwhelmed with crowds, and loud places. This has increased as she has gotten older.

Since the last bout in October, where she got really sick, she has been different. She is more reserved and quieter. She has been harder to get to laugh and smile, and anyone who knows Taylor knows she has a BIG personality, full of laughter and smiles. This has been extremely hard to adjust to, as she is not the "same".

So they went on the trip, eager to get away and have some beautiful memories. What happened was that Taylor was overwhelmed, grumpy and wanting to just swim in the pool, eat snacks, and play Uno. Again, I want to remind everyone that Taylor's tumour is growing and we have no idea what impact that is having on her other then the visible ones with nausea, eyes, coordination. Her face looks more and more like she has had a stroke, where the muscles and face drop on one side, this becomes more pronounced when she is tired. She also is taking steroids to help with some of the effects of the tumour. This has led to her wanting to eat nonstop, and can cause her temper to flare quickly.

The cruise and people they encountered throughout were all absolutely amazing. People were kind and went out of their way to be helpful. Truly an amazing opportunity. So I don't want this to sound ungrateful in any way as it had nothing to do with the actual trip, more that Taylor is a sick kid.

Taylor did not enjoy aspects of the cruise, eating with other people. She hated the crowds and waiting in lines, etc. She however remembered the trip to me as being a good time. Mindy and Landon would try to gage what she would like, and sometimes they were bang on, other times she was not impressed. Taylor wanted to come home. She missed going to school, her family and her friends, shopping and just doing Taylor stuff. So instead of dragging on a difficult trip they returned early. Make-A-Wish were/are amazing, and accommodated this request.

So I have been telling everyone that its because Taylor missed me...which she did, LOL. She was also concerned that Mindy would miss her birthday that was on December 10th. So because they got home on Saturday, I threw a dinner and baked her a cake with our immediate family. I also got Taylor first thing Sunday at my house for breakfast, followed by her and I shopping and going to the library. I can assure you, it was AMAZING! Taylor and I had a blast, she was so excited and happy, telling me how much she loved Christmas and getting to buy people presents.

So we managed to make sure that Taylor got to have a birthday for her Mom, which was really important to her. She has always been very thoughtful and considerate of others.

Taylor helping getting plates and forks for cake
On Monday Taylor got a visit from her Nana and Grandpa. She wanted to go hang out with them at their place, and they had a wonderful day. They baked cookies, went shopping and threw snowballs in the backyard. Nana also made macaroni that I was told was, "just as good as aunties!" Looks like I have some competition. I am over the moon happy though as this is a big step for Taylor to go out with anyone other then me or Mindy and Landon. She has been so much more happy and calmer since coming back from the trip. She seems to be more confident. Not sure that makes sense, but she seems way more like herself then she was before the trip. Taylor was still really happy with this day and told me all about Nana's fake pickles that grandpa puts on his eyes, and the real pickles from the store....LOL cucumbers I am thinking used on the eyes to reduce puffiness.

Throwing snow with Nana

Baking cookies

On Tuesday Grandma Josie and Grandpa Danny came over for some games of Uno. Again, she had a great day, but is really focused on eating, which we know is a result of the steroids. It is just a bit unsettling having her eating so much all the time. She also was over the moon that she got to visit her school. She really wanted to go again the next day, but it was dependent on how radiation therapy went.
Taylor is a total Uno champion
Today, Wednesday was the first day of radiation. Everything went well, Taylor did great. Mindy read to her while she was in there which Taylor really liked. Taylor then had to go see Dr. Wilson at the Stollery. She is to start the chemo along with the radiation as it helps the radiations effectiveness. This is not to cure the cancer as that is not possible, but to hopefully reduce the side effects of the swelling, etc. of the tumour as we are hoping she can have a good Christmas. 

She unfortunately had a bad headache, and Tylenol was not helping, so she was given morphine. She then still was not able to get rid of the headache and she began vomiting. Taylor was not able to go to school as she had hoped. I went and visited her after I was done work (hahaha, left my school as I teach out of town) and we had a lot of fun. She played Uno with me, we had some laughs and silly moments where I urged her to eat a chocolate mint I brought her. Landon was not wanting her to eat them so I told her when no parents were in the room she could eat it and I wouldn't tell. Taylor's reply, "I can't we got security cameras all over the house!" LOL 

While I was there she got a Secret Santa, 12 days of Christmas surprise. She was super excited. Thank you Secret Santa! I didn't get a picture, but I will try to get some in future.

Because this continued over the afternoon and early this evening she is back to emergency at the Stollery. They want to make sure they get the medications she needs in her and kept down so she can feel better. The emergency doctor was familiar with Taylor's file and they are treating her like a rockstar. 

Taylor also got a visit from her orthodontists, Dr. Haberstock, who delivered gifts for her and a lovely card with messages from the staff.


Kathy Martel Sileno said...

Thank you for keeping us updated with your detailed posts. I pray her radiation and goes well and, yes, those darn steroids are necessary but the eating, sometimes not sleeping very well and the mood changes can wreck havoc. My prayers are with Taylor and her family.

Unknown said...

Thank you Kathy. We will adjust I am sure. I think it's not always knowing what to expect...we are all a tad OCD, so hard to have so little control.