Saturday, September 15, 2018

So Tired...

This week has been emotionally exhausting...more so then usually. Although we expected a physical decline, it has been a lot of mental/emotional issues as Taylor struggles to try to understand death. She has become very fixated in her thinking, and is extremely resistant to switching thought patterns. This means she gets extremely frustrated, crying and angry, swearing and physically can lash out on herself or throw things.

Taylor is now repeatedly telling us she wants "to die". She is in distress, and we struggle to help her understand what is happening. It is so exhausting. The last 4 days have been consumed in the vortex of dying, Taylor pleading to die, asking doctors to kill her so she can go to heaven, Taylor packing for heaven (she compulsively wants to pack, as she worries heaven might not have everything, no matter how much we assure her), making lists (I think it is an OCD tendency that calms her), and wanting to buy journals and agendas by the cart load to take to heaven. She is not able to be reasoned with on many of these topics. You think you may have her understanding and then she snaps back to her old thinking.

So I have been a bit busy and try to get back to people, but my days are very long. I will get back to people. I know many want to help with her bucket list, but it is small and its hard to coordinate some areas as its dependent on how she feels. Taylor gets overwhelmed with a lot of people. She likes routine, and to know the people that are around her. Many want to make things happen in a big way, but that is not Taylor at this point.

Halloween is supposed to happen today, I am hoping people respect that Taylor does not need a carnival aspect, she wants a "regular" Halloween in her neighbourhood....NORMAL. I think everyone deals with being sick, dying, etc. very differently.

Tomorrow we are having Christmas. I will try to find time to post some pictures. Likely they will be found on the Facebook page (A Wish For Taylor) as its easier to post them up there.

We are a very close knit family, private in many ways. I know me sharing so much information with everyone makes it seem like we are not. I started the blog way back 10 years ago because I saw my baby sister hurting and overwhelmed beyond belief. I saw my brother-in-law collapsing under the strain of having a baby that was suffering, and they were so overwhelmed by people I had to take over. I keep this blog so that I can help facilitate people that want to help, that want to know how they are, how Taylor is doing, without them having to be bombarded with people, well meaning, but not grasping what it is like to have everyone checking in on them and offering support.

Having a sick child is the frigging hardest job in the world. Mindy and Landon are AMAZING parents, as are so many that have sick children (both physically and ones suffering mental illness).

So please be patient with us. I will get back to people when I can. Sometimes I may have to decline generous offers as they just are not what Taylor would want, even though they are extremely generous. We do value privacy. Please do not contact Mindy and Landon directly unless you are inner circle (if you are not sure ask me), just contact me. I always let them know and will share your messages when appropriate.

Thank you,

Leah Sacha (crazy aunt of Taylor, sister to an AMAZING Mom, and sister-in-law to the most AWESOME Dad)

Thursday, September 6, 2018

FYI and Taylor's Wish List and/or Gift Ideas

Taylor's First Day of Grade 4!

Hello! Well I am overwhelmed by the generous incoming offers for help to make Taylor's Bucket List come to fruition. Thank you! I am sorry I am a tad overwhelmed as I teach all day and usually head to see Taylor after work, so I promise I will get back to everyone. I will coordinate what the schedule is for events so that I can let everyone know and contact you about Halloween, Christmas, and Easter. I think we have the Birthday all planned and organized...well as much as we can, LOL. Thank you birthday angels!

Today was sort of rough. Taylor was good, wanted to go to school and had fun. She has become some what manic though in filling the days and wanting everything done now. This has been really, really hard for Mindy and Landon as they run to fulfill her wishes, but they are exhausted emotionally and physically. When I get to their house Taylor usually has me writing journal entries or recopying old ones for her various purposes. She can have stacks of these and is so fixated they get done, like now! So Mindy did some digging and she is feeling like she could die every night when she goes to bed, so that is why she wants to do everything and not wait. To say our hearts are broken is an understatement, it feels like those broken pieces just keep getting stomped and smashed into smaller and smaller pieces.

Taylor is also on a higher dose of steroid, and other medications. She can get ramped up, and kind of "mean" (a.k.a. state her mind a little more than she generally does). They told Mindy and Landon its like being on idea what that is like, but I can imagine it's weird. 

I am saying all of this to share why when sometimes you speak to them they may seem off, or maybe they are not responding, or whatever. A lot goes on that we are not sharing and appearances can be very deceiving. We have a fairly good veneer to look like we have it together. We don't. This is also why I appreciate all of the people willing to help. Seriously all of you, neighbours, friends, family, nurses, doctors, psychologists, random people, you really are helping us keep going each day. I cannot explain or thank you all enough. 

Marley has been exceptionally snuggly with taylor the last two days and she is loving it!

I know people have been asking what Taylor likes for gifts, etc. I am not adding this list because I want people to feel they need to get her stuff, more for those that are already planning to but are not sure what she likes. Here is the master list I have received from Mindy tonight:

Taylor’s wish list and likes 

Justice stuff
Clothes or dress with dogs\hotdog\french fries on them
Tall socks\no ankle ones (they slip off easy)

Gift cards or money for.
Dollar tree
Movie passes

Paris themed stuff
Jackets/sweaters with thumb holes/fuzzy/soft ones too/
Tie dye clothes
Starbucks sweater

Stuffies or clothes themes:
Basset hounds
Golden Retrievers
Tabby with stripes
Long haired
Other Animals:

Colors Taylor likes:
Blue, aqua, light grey

Long Sleeve Shirts
Pyjamas (night dresses/long shirts)
Pants (stretchy)
Kimono style sweater (no buttons/zippers)
Stuffies (see above list of puppies, etc.)

Wears size 18/20 at Justice - many other stores don’t carry large enough sizes and women’s clothes can be cut very narrow or too curvy and typically too long, but typically women’s M if it is a roomy fit and stretchy fabric.

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


Saturday, September 1, 2018

Poof and Summer was Gone!

Taylor prepping for holidays

The summer went too fast. Taylor was busy with lots of visiting, shopping, journaling, and lots of silly! Taylor was with me just about everyday and we would wander around Sherwood Park. We ate at McDonald's a lot, some days Taylor would take pity on me and we would go to Fatburger.
Taylor's fry popsicle
We decided to all go on a big family vacation to the Oregon Coast. Taylor did not want to take a plane, so it was a driving holiday.

Onward we go!
Pitstop for some tasty donuts in Red Deer

Of course we needed to check out Dollarama!
Throwing stones in the lake
We started our vacation by heading down to Sandpoint, then to Spokane.

Swimming at the pool
We hit Silverwoods amusement park to break up the full days of travel. We had a blast, but forgot that Taylor can't walk the distances she used to be able to do. Mindy ended up finding a cart she could wheel her around in through the park. We went on lots of water rides, laughed our heads off as we all got soaked, it was a wonderful day.
Log Ride was the first stop!

We headed to the Coeur d'Alene Resort for dessert. We had been in Coeur d'Alene 3 years prior and had supper at the resort, but were too full for dessert. We had to go back as the desserts there looked so amazing.

We had to be really aware of Taylor's stamina and how much she could handle. We headed the following day to Portland, but first stopped at Dollar Tree and Hobby Lobby. We scored some very cool stickers and tapes, etc. then we drove to Portland.

First stop was Voodoo Donuts, Powell's bookstore. Taylor started to show greater instability, and she tripped and scraped her knee. Landon piggy backed her and when we got to the bookstore Mindy took Taylor into the washroom to clean her wound, but we had no bandaids. A woman noticed and was kind and had a bandaid which she gave them. The kindness of strangers, always amazes me.

We then headed to the coast, Florence to go on the sand dunes. Mindy, Landon, Taylor and my kids went on the dune buggies. We have previously been to the sand dunes and mistakenly taken the scary dune buggy ride, so we opted for the more tame bus ride, but the wild ones chose to try it! They totally had a blast.

We then moved our way to Newport. 

I wanted a group photo with the lighthouse background, so we headed to the one nearby. We lucked out and saw seals sunbathing, a whale, as well as a giant rock full of birds having a party!

Next we went to the aquarium. So many cool fish! 

We had loads of laughs, and Taylor journaled like crazy. We parted in Seattle and the Thiessen's went to the hot springs. Taylor started exhibiting a digression in health near the end of their trip. Her appetite was going and she was feeling really dizzy and off balanced. She also had a headache, pain in her head.

Taylor on her return was super anxious. She was starting to talk about school and her fears about going back. She felt unsure that she should be going into grade 4 when she had missed learning the grade 3 material. Another anxiety was that she was going to be having her 10th birthday on September 10th...then there was the MRI scheduled for the 14th, the day before she would be having her party. 

Mindy and Landon have been trying there best to alleviate these fears and anxiety, so the MRI has been moved and it will be up to Taylor if she wants to have it. 

In the last two weeks we have had a heart breaking time as Taylor has now rapidly digressed. At first she needed a walker and to use the wheelchair for longer walks when going out. She was really, really off balanced and dizzy. 

This week Taylor has started losing more mobility. Her right arm is not working. Her right leg is frequently not working. She cannot walk more then a few steps while aided. She needs help in using the washroom and getting in and out of her wheel chair. You can see her face becoming more with the paralysis it had before. She is becoming more confused. 

As time goes I will try to update, but things are busy. I will likely be looking for help in the future days as things are becoming more difficult. Right now we are taking things one day at a time.