Christmas Relief

Well it has been a busy holiday season. We spent some time shopping and socializing. Taylor has progressively been weening off of all the drugs in her system and it has made a difference in her anger and swearing. She was really good Christmas Eve and Christmas Day, way more herself.

Taylor is getting more affectionate again, but still is not liking crowds. She has seemed tired, but I think is getting better from not having to run all over all the time for radiation and appointments. I know she really wants to go back to school come January, and we will see how she does. I do not think she will make it for the whole day, but I think its important for her to have control and decide herself that she can't do full days. I know Mindy and Landon are going to try to build some routine into the days as she loves routine, and having things to look forward to doing.

Everyone was great at Christmas allowing her to have her space, not hugging her or kissing her. This had been one of her biggest fears/anxieties lately, people in her space. I also know its been hard for people to not always be around her and Landon and Mindy.

Thank you to everyone who has gone out of there way to bring food and gifts for all of them. Kids with Cancer were extremely generous and thoughtful, taking pictures of presents she could chose from, then rounding them all up for her. They gave lovely treats, and a whoville tree. Tara Lamabe gave them some tickets for Millenium to take Taylor swimming.

Headaches!

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 headaches...it 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!

The Past Few Days....

Well Friday was Taylor's 3rd Radiation Treatment. She will have 5 in total, so Tuesday should be her last. She has been really tired. She is not wanting to visit anyone, only Mindy, Landon and Me. I have gone to see her everyday at her request, but she gets irritated if anyone else comes by.

She has been loving her Secret Santa, who doesn't like cool little gifts?

One thing I have been thinking about is her refusal for hugging people are wanting the to touch her. She has always been a bit like this, she likes to give her Nana and Grandma no hugs, or affection. It is like pulling teeth for certain people. Right now if someone hugs her she gets really upset and it can put her in a terrible mood after. Taylor has some OCD tendencies. So I think it could be about control. I think we all need to be aware of this and not push her. If she says "No" then we should respect that, even if we need a hug, or we want to see her. I think she needs that small bit of control in her life as so much she can't control.

The headaches were really bad, and they just were not seeming to go away. Landon called the oncology doctors to see if there were things they could do to see if that would work. So she has been upped in Morphine, and then they recommend using a more concentrated infant Advil so she didn't have to swallow such large dosages.  She has slowed down a lot on the eating, so I guess we wait and see. She has been super sensitive to smells, and also tends to get in a "negative" rut in thinking at times. She can't seem to shake these easily. Dr. Witol talked to Mindy and said it is to do with short term memory (she has always had this issue, it's just getting worse). Negative memories don't take as long to get stuck in the brain, whereas good ones take longer. So she may be having her brain remember all bad stuff, forgetting the good. So they will try to do some things to reroute this, like positive pictures from the day when she is happy or things make her happy.



One other thing is Taylor's swearing. She has been using profanity, a lot of "damn" this or that. Again, not sure why, maybe anger from being sick, her brain being impacted by tumour, just something different. Its awkward when we go out and you can see the looks. In some ways as a teacher I have found this funny and sad. There are many people and kids that are different. They struggle with diagnosis and lives we all know little about. I urge everyone to next time not judge, but consider you don't know their story, so just be kind. Always just try to be kind. I know I am probably preaching to the choir here, but I had to throw it out there.
                                                                                                                                                          Thank you to everyone who has made, is making meals for Mindy, Landon and Taylor. I did finally make a google document so people can add or see what others are bringing. You can hopefully click on the address below to get to the document.

Food Sign Up:
https://docs.google.com/document/d/1k2XfSt05r5nNGLb_Vc8Iiym4yC3LP7kohLuc9BakRYQ/edit?usp=sharing


Okay, I will try to update again. I have been slightly busy as I am sure everyone is with the holidays coming quickly.

Helping with Freezer Meals or Fresh Food

Okay, so I know I sent out a help request on food, and of course then people want to know more about what they like and don't like...I know most, but double checked with Mindy and I want to share her response as it's cute. She can strangle me later.

Here it is:

Hello Darling,

Landon and I aren’t seafood fans at all, but we like pretty well everything else LOL (hence our curvy figures) - except Landon and T aren’t a huge fan of Brussel sprouts, but I like them.

Right now Taylor likes fried rice, Mac and cheese casseroles, aunties cheesy potatoes, meatless pasta dishes and treats🤣.  I would caution folks against things that are on the hot and spicy side as T doesn’t handle them well and Landon is kind of wimpy if it is too spicy.

Indian food
Greek food
Tacos and Mexican style dishes
Stir fry’s
Pasta (cream or tomato base)
Ribs
Roast beef
Pork chops
Ham
Meatballs
Chicken anything really (we will eat dark and white meat but I tend to prefer white)
Potatoes and rice done all different ways breads/buns
Soups, stews, chilli
Gravy, cheese, sauces
Salads
Veggies

There isn’t much we don’t like - if people have ideas I’m sure you would be a good judge. We like home cooking and comfort food LMAO.  And we will gladly accept any home baked goodness in any form - sweet or savoury, muffins, scones, biscuits, cookies, bars, cupcakes LOL

Thanks!

I will send out an update later if I have any new news. I do know that Cheryl is coming to do a bang cut for Taylor as her bangs are driving her nuts, and she wants some auntie bangs again, LOL. Mom is swinging by with some food, I think roast beef and mashed potatoes (in case someone wants to know, LOL).

Taylor also got her second 12 Days of Christmas drop. She was over the moon again. She kept reminding Mindy and Landon yesterday that she needed to check the front door in case someone had come by, so she is TOTALLY LOVING this and looks forward to it everyday. I will attach pictures later too!

Day 2 of Radiation

Well last night the Stollery staff was able to get Taylor's pain and vomiting under control and they got to go home. Mindy and Landon were so grateful for such amazing staff, what great care they took with Taylor and their thorough understanding of her case. Thank you to our nurses and doctors!

Today was the second day of radiation. Mindy and Landon have decided to not do chemo at this point. Taylor has a poster of her treatments on a poster and she gets to add a sticker after each treatment, which she thoroughly enjoys...loves stickers!

Taylor had a headache after radiation so she did not want to go out and do anything. She did bake some ginger snap cookies. She also had a nice long 3 hour nap. So far there has not been any vomiting, but she is still battling a headache.

I spent some time with her after her psychologist appointment, and she beat me repeatedly at Uno. You could tell she was a tad out of sorts tonight and not wanting to take anymore medicine. She usually gets like this when she's tired or not feeling good, as she is generally a rockstar about everything.

One thing that has occurred is how busy Mindy and Landon are just getting Taylor to appointments and monitoring her various symptoms. They are pretty exhausted and struggling to get normal stuff done. A parent of one of Taylor's former classmates, Kellie Jackson Bennet, asked if they needed freezer meals. I talked to Mindy about this as I know they do not actually have any, and she said that would be excellent. They have been eating out, fast food, etc. and don't seem to have time to make dinners. So if anyone might want to help by making a few freezer meals for them, or even fresh dinners, that would be greatly appreciated.  Just send me an email at: DorcasL@telus.net if you would like to do this.

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.

Disney Cruise

Well yesterday they left at the crack of dawn (4:30 am) for the airport. It was a looooong flight, with some delays, and rushing around. They got to Florida around 3:30pm. Taylor got to go and see the cockpit of the airplane, and was give chocolate bars by the pilots...Taylor was quite pleased.

Mindy said Taylor was grumpy and bored by the last hour of the flight.

So after they got checked into their hotel they went for something to eat, followed by a swim in the hotels infinity pool.

Infinity pool

Apparently their original room had a lovely view of the airport so the hotel staff upgraded their room for the :)

View from their new room

So today they made their way to the cruise. They had a lovely welcome, followed by the safety drill. Taylor was not very impressed with the life jacket.

I haven't heard too much yet about what happened next, but I am pretty sure Taylor sent me a text on Landon's phone saying, "It's ridiculous here. It was a big party." Maybe it was Landon, LOL but sounds exciting and like they are having fun. I asked if they had an option to go into a shark cage if they would do that....they said, "NO!" LOL

Make-A-Wish

Mindy and Taylor getting Pedicures for their trip

Pretty toes

Make-A-Wish came and spoke to Taylor on Monday. They leave for a Disney cruise on Sunday! Super quick. They will head to Bahamas and have two days at DisneyWorld. Wahoo! So to prepare for this Mindy and Taylor went for a pedicure yesterday. I asked Taylor to show me her toes tonight and found out she had taken all the nail polish off as "it was burning" on her toes...LOL but I think they had fun.

Yesterday super sucked for Taylor. She had two failed IV attempts and then was sent down to anesthesia people and they got it on their first poke. They also froze her, which was good. Then she had to go to the Cross Cancer for her CT and mask making for Radiation Therapy. They make a hard plastic mask with little holes in it and it clips into the table, so they have to stay super still as they are mapping for the Radiation Therapy(RT). Then they had a really long wait as the guy ahead of Taylor kept moving, so they had to redo the scans ahead of her...she had to sit with the mask on for 20 minutes, and it was horrible!

During the MRI Mindy held her leg and had her heart break as she said the machine is so loud you can't really talk or anything, and she could see her chest and she was crying off and on. I think Mindy should get a Super Hero Momma badge.

I know so many Mom's and Dad's of kids with these medical problems really deserve huge rounds of applause. I think I would lose my mind.

Grandparents playing Uno

Taylor got an early visit from all her grandparents. Taylor is a real Uno shark and I recommend to her that she should start playing for money, LOL.

Taylor met again with Make-A-Wish tonight and was so excited they stopped by to tell us about it and show us all the super thoughtful gifts they gave her: carry on MinnieMouse, Minnie Mouse stuffy, camera, cool drinking cup, sunscreen, etc. She was so tired and so silly! Tomorrow we are going to do a little shopping for her trip, and then they are off on Sunday.