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Thursday, November 30, 2017

People Have Been Asking

Gifts from Newfoundland


I have had many people asking if they can donate or help Mindy and Landon. At this point they are not asking for anything. I am posting this for people who just really want to do something.

We do not know what is to come. So it is hard to plan, or know what needs to be done. Some people have already donated things to them, and they are keeping a separate account right now as an emergency fund for that money. They plan to use it as they need, if they need. I know people have said they don't care, use the money to do stuff with Taylor. So that is what they plan to do, and with whatever monies that are left over, they will eventually donate that to some of their favorite charities: The Stollery, Make-A-Wish, Kids with Cancer Society, Neurosurgery Kids Fund.

If things stay good, Mindy may want to throw a party for Taylor: Dance Party/Uno Party. Of course, we have no idea at this point and are going day by day. Taylor is good now, but not sure what the timeline for her health will be. Taylor's list is so damn cute, so I will share:

  • Location: inside place
  • good pop dance music
  • balloon animals
  • face paint
  • hair braiding
  • bouncy castle
  • puppies theme
  • ice cream
  • cupcakes-vanilla
  • watermelon
  • grapes
  • chips
  • People: Family, kids from class, friends of Mom & Dad's and their kids.
So for those who wish to donate a monetary gift to Mindy, Landon and Taylor I will suggest making an email transfer. You can send it to either of them at:
miranda.thiessen@gmail.com
or
landonth@gmail.com

Do not feel you need to donate. This is just for anyone who has been wanting to, and I have been putting you off, LOL. I had Mindy and Landon discuss this last night as I have had people inquiring. They are not having any financial issues, so I want to be clear. This is just for those who want to do this, it will be for doing things with Taylor, emergencies, and later to be donated. 

People have been beyond generous. Taylor has loved the gifts she has received. Mindy and Landon have had some very thoughtful gifts as well, such as gift card to the kennel they take Marley to when needed. There are many gifts when you consider: food deliveries to hospital, laundry done when they were in hospital, snow removal, prayers, wishes, hopes and love sent. These are so important as you can't put a price on everyone's loving thoughts, prayers and wishes. Thank you all for your generous gifts already given in so many ways!

Taylor went skating on Tuesday, but was frustrated when her legs were not working the way she wanted them to, but yesterday they went swimming and Taylor had a blast. 
Taylor Painting her Christmas Presents

Enjoying her Blizzard she purchased with her gift card

Dinner at Lingnan's

Ami and Taylor-Ami is an owner of Lingnan's and her and her daughter who showered her with gifts. Such an amazing and kind woman!

Taylor wrapping her first batch of presents at my house :) She was so excited. She loves Christmas and has such a list of gifts to buy, LOL.




Wednesday, November 29, 2017

Bittersweet…a Shattered Mess

On Thursday November 23rd we had the meeting for the results on Taylor’s biopsy. We were warned multiple times that the results were not good, but we held hope to our chests. 

I ask that this information being shared is kept private, Taylor does not know. Out of respect that means please do not share with anyone that might slip and say something to her, if they should see her.

Thursday we were told that the type of cancer Taylor has is new, infiltrating astrocytoma. This type of cancer requires it to be cut out. Her location of the tumour however is inoperable. It is untreatable otherwise. The feeling is that the cancer is a result of the radiation she received at a year old. Generally this is a reason they do not like to radiate so young, but at the time you worry about the battle in front of you, not ahead. 

Make a Wish came and spoke to Taylor yesterday. All of us are trying to spend time with her. She has really been driven to buy Christmas presents for everyone, so I have taken her shopping and we have done some crafts. She is really go, go, go, but you can see the impacts the tumour has had on her energy, coordination and sight. She is supposed to wear an eye patch as her eye lid is not closing or blinking, which is a problem. Taylor feels embarrassed about the eye patch and is very hesitant to wear it. 



Please respect that MIndy and Landon do not want to be bombarded by people expressing their sorrow. Express it on Facebook or the blog we have set up for Taylor. 

Mindy and Landon are pouring their energy and love into Taylor. They are overwhelmed by all the people who meaning well are sending them texts and phone calls offering help, or telling them how sorry they are about all of this. They are busy with coordinating appointments for Taylor, and doing things with Taylor. 

They know everyone cares and feels bad. 

DO NOT CALL or TEXT! I will find you. 

Consider how this feels. Consider how much time you are stealing from them, as they get so many people calling, well meaning, but it is too much. 

STOP! Call me, text me. I am the in-between. I will share with them when appropriate. I know people feel bad. 

This is so heartbreaking and has shattered our hearts. 


Taylor’s Auntie Leah

Thursday, November 23, 2017

Donations

Hello,



I just wanted to put a post up on donations. Mindy and Landon are concerned that people will take advantage of their situation, ask for handouts or donations for them. This has happened in the past where someone has tried to falsely get stuff in Taylor's name. If you do ever see anyone doing this, other than through me or Mindy and Landon, please let us know and DO NOT give anything. At this point Mindy and Landon are fine. They can manage and are not in a financial bind or anything.

We are extremely grateful to all who brought food to the hospital while they were in there: Josie Checknita, Don and Roberta Thiessen, Cheryl Bodnar, Michelle Olivares, Lorna Dancey, Kelli Parks, Jenn Harris, Melanie Shockey, June Nypiuk, Kelly Atwell, Brandy Riendeau, Ronald McDonald House. You are all heroes for stepping up and providing food when I could not. We had many others not named who tried to offer other ways to donate, which is greatly appreciated. I am so happy we were able to cover the time they were there.

Taylor has received gifts from her school, a gorgeous blanket, colouring activity book, colouring pencils, which she loved. Mindy and Landon's chiropractor gave her an art jar and a DQ gift card, which she is over the moon about and can't wait to buy a blizzard. The chiropractor's mom also gave Taylor two lovely Christmas ornaments and a snowman stuffy that she was proudly showing off and bringing around with her today.

Kids with Cancer has also provided monies to Mindy and Landon to cover general expenses from their Family Support Fund.

The Neuro team at U of A also gave Taylor a bunch of goodies.

LandSharx in Edmonton has generously added Mindy and Landon's home to their list to receive snow removal services this year. (Kayla Cullimore was the contact and their company website is LandSharx.ca or phone: 780-451-6600) In case anyone is looking for a service for snow removal I recommend checking them out.

All of this is beyond generous, and shows such amazing and kind people in this world. We thank you for your big hearts. I know I may have missed someone or something, and for that I am sorry.

I just am worried that people will feel they need to donate or do something. Honestly do not feel like you need to do anything at this point. If things change I will let people know. All I ask at this point is for prayers, strength, hope and positive karma headed Taylor's way.




Taylor is special, I know I am her auntie, but she is and I just don't care what anyone thinks. She has always been a shining star in a dark night for me. She stole my heart right at the start and the world is a better place with her in it. Taylor would like to be a Veterinarian or a teacher. She has a warm and kind heart.

"When you think hope is gone, that is when you need to look farther than your eyes can see."-Peter Kasule

Wednesday, November 22, 2017

Relaxing at Home

Taylor trying the beret I got her in Paris




















Mindy, Landon and Taylor have been enjoying some down time at home. Taylor is slowly feeling better and regaining some strength, although she is still off balance, with some vomiting. Mindy and Landon have had Taylor wanting them around 24/7, and she sleeps with them as she has been vomiting at night and is so off balance they worry about her injuring herself. Needless to say I don't think they have been having the best sleeps. We came up with an idea to try last night, one of our cots with a mattress pad that she could put by their bed...I think this may do the trick for now.









There has been more laughing, and smiles from our beautiful girl, which is pure joy. Grandpa Don and Nana Roberta have been wonderful in helping with Taylor, playing endless games of Uno, LOL.

Cheryl truly was my angel while I was away in Paris, so indebted to her kindness in ensuring Mindy, Landon and Taylor were looked after.

Thank you to all who generously brought food and snacks to the hospital for Mindy and Landon. Mindy and Landon laughed that they were eating better at the hospital then they would be at home. You are all such angels!

We now wait to see what the biopsy will bring and what happens next. I will need to request that everyone give Mindy and Landon some space to deal with this when it happens.

We are scared.

This is always sheer terror, it NEVER gets easier.

Taylor needs your prayers, hope, strength, all positive energy going her way. We beat the monster before, I believe through sheer will and hope that people gave her. She needs you again.

I will update again when I can, and let people know if they can help. Right now its getting Taylor feeling better and having some "normal" in her life.

Sunday, November 12, 2017

Better Day

Yesterday was better. Taylor got some of her appetite back, although she still threw up a few times. They are now keeping her medicated instead of on demand which so far seems to be helping. She is walking a bit more, went for a wheel chair ride around and watching movies, tv show Fuller House. She’s been joking with Mindy and Landon as Mindy said, “Taylor is laughing and talking and name calling and pinching us today, she is in a good mood.” So we are hoping this keeps up as it’s hard to see Taylor not being Taylor. 

Friday, November 10, 2017

Another rough day

Well Taylor was again in a lot of pain and irritable. Taylor has sores all over in her mouth, unsure why, lots of potential reasons from vomiting, when her tongue was swollen she could have been biting, etc. but because all the neuro team was in surgery they were still waiting for someone to come look and then okay drugs,medicated  mouthwash at 8:00pm....a super long day for a child in pain to wait. Taylor was hungry but due to sores and pain and no okay from the busy neuro team she went with out last time I saw her around 8:00pm. My hope is that she got some relief after I left, but I don’t know.

They are out of PICU, in 4D recovery room called and ICE room. Yesterday Taylor did not want visitors, only her mom and dad. I’ll try to update later if I get some more information. We will hopefully get biopsy results and begin to look at what happens next. Please keep praying, hoping, wishing and sending strength to Taylor, Mindy and Landon. This is a battle. I intend to win with Taylor getting better, and I’m not accepting anything less. We have done this before and we will do it again, one step at a time. 

Wednesday, November 8, 2017

Slowly seeing imporvements


Taylor is doing much better today. She still can't have a lot of pain meds, but she seems to be managing it and able to sleep, so that is good. She was much more with it today, chatting up a storm, demanding her nightgown get changed, removal of some of the tubes, etc. LOL She hates the bed as it inflates and adjusted to help prevent bed sore and such, so she again demanded that it be turned off/unplugged, LOL so it was and she is sleeping in a flat mattress. The catheter was also removed so she gets to pee in a bed pan...she made sure to share all her issues when I went to visit her. Landon climbed up and hung a towel up to block some of the light that was bothering Taylor, displaying again his Daddy superpowers!

Enjoying a popsicle

Mindy and Landon don't have a room or bed tonight, but hope that they can get one tomorrow. Hopefully Taylor continues to improve and they can be moved out of PICU. Mindy and Landon actually took advantage to get some sleep last night as their nurse that was on is ABSOLUTELY rockstar of a nurse was on. I am an idiot and did not save her name in my reminders, so I will have to get it from Mindy again....my brains slightly fried tonight.

The chair is comfy





Getting some rest!



Landon figures the nurses like him as they brought him a comfy chair tonight


Taylor was very pleased with the gift I brought her that Ms. Reaney from the school. We went through the card her classmates and school staff made her, and you could see she was really happy. She loves blankets, and so the blanket she was given was a perfect gift as was the activity book and pencil crayons...looks like they have some colouring to do!




She has not eaten solids yet, but apparently was feeling super hungry earlier and dreaming of the chicken nuggets, fries, pizza and a long list of Taylor delights to eat. Hopefully tomorrow she can move into eating some solids.

Tuesday, November 7, 2017

Today was Pretty Rough

Taylor was in a lot of pain this morning. They wanted to get a CT scan to check that everything in her head was okay, as she does not have any monitors in there or a shunt, so they need to make sure she isn't getting swelling. Taylor was in a lot of pain and they were not wanting to give her pain medication and of course, Mindy was really concerned and although she wanted to let Landon sleep, she gave him a call. Landon certainly was not feeling the answers they were being given were good, so he demanded they speak to the neurosurgeon. They ended up calling and giving her some sort of medication (dilotten ?) but Mindy and Landon were still pretty concerned as she was in pain and they were not sure she could stay still, etc. for the CT scan. Taylor's tongue was super swollen and she has continued to vomit, so they were super worried that she could choke to death if she got too agitated as she was really agitated today.

She managed to get through the CT scan, and it was all good. 

What is super heartbreaking is that they stopped her pain meds as her tongue is so swollen and her CO2 levels are high, so they needed to stop them to get the tongue swelling down and lower her CO2 levels. Let's say it has been a heartbreaking day watching her in such pain and discomfort. She has been awake more and crying and whining from the pain, etc. as well she continues to vomit. This is all considered normal by the doctors and she should start feeling better. Once she is out of the "danger zone" they can increase her pain meds and get her more comfortable. I went to visit Mindy tonight as Taylor did not want anyone but her Mom and Dad, but of course they are in PICU so I just sat farther back where Taylor didn't have to see me. She was vomiting and crying and I felt my heart being ripped apart. I wish I could take her pain for her.It kills a piece of me too having to watch as Mindy and Landon witness this...its so not fair! They have started to give her Tylenol by suppository since she won’t take it orally, so hopefully that will help some too. She is still very fidgety with her arms and legs and touching her face and head. She doesn’t want to speak with her swollen tongue.

My Mom came this morning so Mindy and Landon could rest for a few hours. What is super sad is seeing all the kids in PICU with no adults or family. No parents, no anyone but the health care staff. In some ways I feel how blessed we are to have everyone that is willing to come and watch Taylor, her amazing grandparents Don and Roberta, Mom and Danny who drop everything for her, friends and family who are chipping in to help keep them fed and watered while they care for Taylor, and all of you reading this who are praying and sending hope, positive energy her way. Mom went home this afternoon to cook Mindy and Landon dinner, making them some comfort food, roast beef, mashed potatoes and corn. Mom forgot cutlery and so I went searching for some, and you know what I found? There are spoons and knives, but no forks. I also had to go search them out, which is why I am recommending just putting some in with any food you bring. 

Mindy says they are watching fuller house on her iPad for bits of time while she is awake until she falls asleep. 

If I get more time I will try to give you some of our more ridiculous moments, but I am kinda tired and this is already really long. 

Love you all, keep sending prayers, hopes, wishes and strength. 

P.S. not to brag but Taylor said, "I Love You" last night to me, and that was the most AMAZING 3 words

Monday, November 6, 2017

Please pray today, send wishes, hope and strength Taylor's way

So the biopsy was moved to today. I am not sure exactly when it will occur, so I will try to update later. This is a really tricky biopsy, meaning it may not even be able to be biopsied due to its location. That being said I will update when I have more news.

Again, please do not contact Mindy and Landon, call me, or post on blog/Facebook page, they can then look at your well wishes when they feel up to it, instead of being bombarded. 


We really need everyone's positive energy, so send it out, just like a care bear, belly out and all your good thoughts and energies, prayers sent her way.

Friday, November 3, 2017

The Monster Calls



Mindy and Landon would like to share their devastating news. People are beginning to slowly start asking questions, and they are worried that they will continue to see an increase as people tend to do, meaning well, but still overwhelming at a time like this. Please, no matter how well meaning you are, try to understand that this is a really hard time, they know people care and love them and Taylor, but they just would prefer to avoid being bombarded. I will try to keep everyone up-to-date via this blog and link it into our Facebook account. If you have questions you can message me, I will get back to you.

So Taylor has been feeling unwell, progressively worsening and Landon's spidey (not a "real" word, but I think you will all understand what I am saying) senses were going berserk. Landon took Taylor to the Stollery on Tuesday October 31st, 2017. They gave Taylor a CT scan, which showed some "stuff" (I am using my most excellent medical terminology here). They then decided they needed to do an MRI. There is generally a wait but the Stollery and the team there are AMAZING, and got our girl in quick. Seriously, these people are so wonderful.

So the MRI showed a large mass growing in her brain stem, the Pons,  roughly the size of a golf ball, the same size as her last tumour so long ago. Taylor had an MRI 10 months ago that was clear, so this tells us it's fast growing. The tumour is pushing on her brain and causing her to feel sick (throwing up, headaches, off balance).

Let us just say that due to the location of the tumour its not looking positive, although I haven't lost hope, as we wait for further answers. Taylor had an MRS scan today that was more focused into the area of the tumour, but we wont't know anything until they actually open up her head and see. They plan to TRY to take a biopsy on Tuesday. The biopsy will let us know if its the same cancer, or a different one. Why I emphasize TRY is that the Pons are an area you don't fart around with as it can be fatal.

At this point Taylor has been given steroids to help decrease swelling and the ease the pressure on her brain. She is feeling better, however, this is temporary bandaid as the tumour continues to grow it will require something different.

I think that is enough for all of you now until we know more. I will update as I get information. Please DO NOT CONTACT MINDY OR LANDON! When I know how people can help, I will let you know. They would also appreciate people saving advice on all the various methods of alternative therapies, or natural things to try, etc. To say we feel like a freight train has run over us does not even begin to illustrate how this feels. Please prey for Taylor, send her your hope, your strength and your energy.