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Wednesday, September 5, 2018

Bucket List

Bucket List

Everyday has brought a new loss. On Monday I was getting texts from Mindy and Taylor. They were in the hospital at Stollery emergency. Taylor had not been able to sleep her body was spasming, and she had a headache. Taylor who doesn't like having to go to the hospital requested to go. What this tells us was she was scared.

The staff were great, and she was calm but extremely tired. The hospital decided the best route was to get her a room up on the oncology ward, so that they could leave on a pass but if they needed to come back they would not have to go back through the emergency. So they settled her in a private room on the Oncology ward.

Taylor was starving as they were not letting her eat in case they needed to do an MRI. The neurologists wanted to look at her and rule out seizures. They decided she would get a CAT scan, so she was able to finally eat. They tried some new meds to try to help ease her anxiety and calm the muscle spasms/twitching.  Although they were able to leave, Taylor felt more comfortable staying at the hospital.
Relaxing in the hotel

Tuesday they had a meeting with Taylor's team, as the CT showed significant growth. The decided the Care plan and DNR for going into the future. They told them that the best guess is she has weeks left, not months.

They told Taylor on Tuesday that she is going to die. She wasn't upset, and said she knew. I am not fully sure she really understands. I think we are all feeling crushed. Stephanie with ChildLife helped them to tell Taylor. I was not there, but they told me what was said, "you might turn 10, but you won't turn 11." "You will not be there at Christmas." I can't wrap my mind around this, how can she?

So to give Taylor her control in how things go from here out, she is planning the stuff she wants to do, and we are going to try and make it happen. We have moved her birthday party to this weekend. She is so excited.
Birthday List

So I am going to post some of the lists in the hopes that we can get some help or ideas or whatever. Of course Mindy and Landon want to make it as exciting and special as possible but its hard on such short deadline, as well as looking after Taylor. It has been hard for me as well as I am teaching now that school started and then I go to their house right after work to visit Taylor who wants me to come.

If anyone has some ideas or things they would like to take off her birthday list we would be grateful. I also thought maybe decorating their main floor for the birthday would be cool for her, so if anyone has decorations or wants to come and do that it would be appreciated. It would need to be done either the night before (Friday when she goes to bed) or on Saturday morning. I think if someone had helium, or whatever you fill balloons with so they float (I'm sorry my brain is numb), it would be so cool to have a bunch of balloons or something, You can text me, or email me, or message me on the Facebook page. Leah 780-803-9988, I of course teach most of the day but will try to get back to you as soon as I can. Please don't contact Mindy and Landon as they need to have space.

Below are some other lists of things we need to do in the next few weeks...please if you can help us figure this out it would be appreciated. I know some are wanting to, so please take a look, come up with some ideas and give me a call. I know people have connections and may be able to help us make some special moments for Taylor, Mindy and Landon.


Puppy Meet Up



Sharon Harmatiuk said...

Life can be so cruel at times. I'm sure you are all heartbroken.
I have read your blog, since Taylor first fought this horrible disease. Now I'm in disbelief 😢
I hope she can do as much as she can from her list.
Hugs to you all xx

allison moroz said...

Oh heart continues to break for you and your family. You all will be in my prayers...PLEASE, don’t hesitate to call or text me if you think I can help you in any way. ❤️❤️❤️

Ryan Sampert said...

We will be at the dog park tommorow!

Ryan Sampert said...

We will be at the dog park tommorow!