Lemonade Stand in Taylor's Future

Taylor was able to attend her cousin Kiandra's Grade 6 grad last Friday

Well Taylor is in full money grabbing mode! She is wanting to raise money for Kids with Cancer Society, so she is planning to do a lemonade stand, bottle drive and sell cookies. Tonight she offered me a cookie, as well as her Uncle Fred, only for her to tell us after we owed her $5 a cookie, LMAO. So I paid her $10 for 2 cookies. She then was asking if we wanted a drink, only to tell us after we were given drinks that again we owed her $5...oh dear!

So when I am done Diploma marking this week I will sit down with Taylor and we can plan some fundraisers for the Kids with Cancer Society. It is such an amazing society that helps families in so many ways, ways you don't even realize you need. So I will let everyone know about her ideas and ways you could potentially help if you want...it will likely cost you $5, bahahahaha her new fair pricing. She is a very aggressive salesperson, so I am just warning you, she will tolerate no excuses.

Things have been sort of AWESOME!

Well as usual I have been busy, busy, busy! The life of a teacher, and one who has a niece that as soon as she knows I am not at school wants me with her, LOL. Love me special wiener!

Mindy, Landon and Taylor went to Mexico, or were off to Mexico last time I posted. Things were definitely much better during this trip, Taylor was feeling good, so no health issues. She loved the pool, and waterslides, but wanted nothing to do with the "gross" ocean, LOL. Apparently she takes after me and does not like to think about all the creatures in the water. I won't say too much, as I am going to see if Mindy will do a trip update for everyone. I don't have their pictures, so its tricky to do the update. 

Landon and Taylor at the pool

We had a bit of a scare when they came back. They were trying to ween her off some of the medication. She started having headaches again, and I think the reality we have been able to ignore these last few months came rushing back. I am happy to report that she has not been having any headaches. Mindy figures it was likely the travel, shift of pressure. 

Taylor has had an injury. She was visiting her grandparents and slammed her finger in the door, so she broke her baby finger. She was not impressed with the first little splint they gave her as she was really hoping for a cast-yes, a cast for her whole arm because she broke her baby finger...this girl is too much some days. I was being very sympathetic and playing into her desire for a cast, so I suggested she really could use a whole body cast. Her response was priceless, "I wish you could take me to the doctors auntie, Mom just takes me to all the bad ones." LMAO She figures if I take her she will get a giant cast.

She did manage to get a cast, a very tiny cast. I am sure I have never seen one so small before, LOL. She is quite happy with it, even though it means she can't go in the water. She is apparently using her injury to get out of things that she doesn't want to do. I guess she was driving the golf cart for Nana and Grandpa, so Nana suggested she come walk with her for a bit. Taylor, "No I can't. I can't do any sports." BAhahahaha she is so aunties girl some days.

I sent Taylor a picture with me sticking out my tongue like this and she mimicked me and sent one back

Mindy, Landon and I went on June 9th to "Caring for the Caregiver" put on by the Brain Tumour Foundation of Canada, at the Hotel MacDonald. It was a good reinforcement for how hard it is to feel supported some days, how so many of us don't know how to help, or what to say. I will try and write some more about all these things in future when I have some time. 

Mindy, Landon and Taylor will be able to move back home this week, as the house is just about finished. Hurrah! I am so looking forward to summer and being able to see my little wiener all the time. 

I just wanted to send out an update as I know its been a long time. Thank you all for your continued support. It has been a blessing to have these busy months with Taylor feeling good. 

It has been awhile, but all is well

Things have been pretty tame lately. Taylor has been doing wonderful, she is trying things that she hasn't wanted to do for a long time. Taylor has always LOVED the outdoors and is really athletic and strong. She lost so much strength and energy with the surgery and radiation, so we were unsure she would be able to do a lot of things she used to do: monkey bars, riding her bike, long walks.

So she can do the monkey bars, a little harder for her due to all the weight gain, but she can do them! She was also worried about riding her bike as she hasn't had the same balance, so thought that she might need training wheels, but hopefully you can see from the video she has been able to ride her bike. They have been taking daily long walks, walking the dogs, bike riding and going to the park along the way.

Taylor had some exams on her sight and hearing. Taylor definitely has some blind spots in her vision, but largely has adapted to deal with this. Her hearing has actually not been as impaired as she was telling us. The turkey can hear fine in her left ear (8/10) and a full hearing in her right ear. She told me after the hearing test was done, "but I really wanted hearing aids!" LOL what a goof ball. 

Mindy and Landon tried a "staycation" at WEM with Taylor. They had a blast. Taylor went to the waterpark all day, they watched a movie while in the jacuzzi/hottub. 

Mindy and I then took the kids to Calgary for a couple days. We had fun, although Mindy got her first "speeding" ticket (60km/hr in a 50km/hr zone....no signs, and I swear should have been a 60 zone). 

Since Taylor is doing so well, Mindy and Landon thought they would try another vacation, as the wish trip was such a bust. They have gone to Mexico for a week. I just FaceTimed with Taylor and they made it there safe. I am hoping they have some quality family time together.

Again, all has been good. Taylor has been feeling good. We are blessed!

March 29th MRI Results

Taylor's new favourite thing is journaling!

So Mindy and Landon had the results of the MRI on March 29th. Before that they were told that there was new growth to the tumour. They are unsure if the tumour stopped after radiation for a bit, or if it slowed down the growth. Basically the effects of radiation (RT)  last somewhere between 3 months, maybe 6 months. Because Taylor has been doing so great for the past 3 months they are already are happy with the results of radiation. There will be no other MRI unless she goes another 3 months with little or no change...basically if she continues to do well its a medical miracle and the RT has done more then expected.

What they are expecting is that we will start to see a decline in the next few weeks/months-the RT bought us more time than they predicted, but they predict it will start changing. They did recommend that they could do medication reduction, but Mindy and Landon don't want to make changes because it could potentially help with swelling and muscle tightness, but not a significant change. The risks though would be that she could start getting headaches and vomiting again, something that is not worth the change.

People keep offering suggestions, although well meaning, to try different things to help "cure" Taylor. I would ask people stop. We know people are very well meaning and its because they find it hard to wrap their minds around the fact that this can't be cured. There are at least 9-10 doctors that Taylors Doctors consult with, all specialists. They have no suggestions. Taylor's quality of life is the most important thing to us. We do not want to make her suffer through trials, etc. just trying to prolong her life. This would be no life. There are always side effects, and complications that go along with this. She was so absolutely miserable after her operation and radiation, that it would be beyond cruel to submit her to any of these sorts of just on the whim that it buys time. That may not be how you feel, but I would ask that we respect our families wishes.

It is a cruelty to assume that Mindy and Landon have not considered and weighed all of these options. It is beyond my understanding how they are having to make these calls. It is a nightmare. Only parents who have been forced to make these types of decisions can truly understand what this is like. I am not talking about an adult, we are talking about a beautiful 9 year old girl. I am not going to lie, I am furious that we are doing this again. We fought this battle. We fought with all our hearts, minds and souls. We won. This seems so unfair to be given this monster again.

Bald is Beautiful photoshoot by Claudine Lavoie

I have been so crazy busy, I am sorry it has taken me so long to get on here. The past month has been such a whirlwind. We have just had so many things shooting out at us to deal with. Mindy and Landon are so grateful for the sisters who have rented their home to them. It has been a huge adjustment living in Fort Saskatchewan. They are unsure at this point exactly when they will be able to go back home, hopefully June.

Hair Massacure was an absolutely amazing experience. Tammy MacDonald is like this tiny powerful angel who pours her special powers on making people feel like they are able to conquer anything. I was so appreciative of all the volunteers at the Hair Massacure. There is a special kind of magic in the air at this event. I hope next year everyone has an opportunity to go and experience the event as a volunteer, participant, or supporter. There are also these AWESOME photographers that capture the event, the fun, the beauty and the love. Thank you! It amazes me that this mother who had her daughter battling the MONSTER, organizes, fights, and advocates...and this event is the Hair Massacure. 

Sharon Taylor was so generous to share all of her beautiful shots with Mindy and Landon, as well as make Taylor a special towel to Taylor's specifications. For some reason I feel like I know Sharon. I don't know how, or why, but she is so familiar to me. Landon and Mindy were so shocked that she was willing to share all the shots she had of our group, all in professional level files for free. Then she went out of her way to offer Taylor these cute towels she creates/makes and when Taylor told her, "I like the top of this one, and the colour of that one." She went and made one specially for Taylor. What amazing kindness!

Claudine Lavoie we are so grateful for a "Bald is Beautiful" shoot. Some of the people that shave come in for a special photoshoot post Hair Massacure. What is truly amazing is these gorgeous and brave people, all who have special stories in dealing with the MONSTER, come and get these beautiful photos done to capture their strength and beauty. There was this beautiful mother with her daughter. The Mom is fighting cancer and her daughter shaved for her. There was this special love between them, and power. There was a Mom who has lost a daughter to cancer there, and she was with her two children: one shaved, one pinked. This family gives me hope that we can continue,  I did not know everyones story, but I wished I did.

There were just so many photographers that have also shared their original quality files to thank: Romy from Cheers (see below photos), and Jerry from Humans of Edmonton. If you have had a chance to look at the Hair Massacure Facebook page you will see all of these amazing photos!

Lorna Dancey Photography is a special friend who has done pre and post shoots also for Mindy, Landon and taylor. She has done family photos for them before, and as soon as Taylor's new prognosis happened she has been ongoing in trying to work with the family to get their family captured. Landon sent me the following ones that she took awhile ago and they tear my heart a bit

Thank you to everyone who came out to cheer us on!

Thank you to Taylor's school: Mr. Danzinger, Mrs. Reaney, the other kids who shaved or donated, the other staff (I am sorry I don't have everyone's name). Everyone has gone over and above. It is moments and gifts of kindness that renews my belief in the goodness of humanity.

MRI on Monday!

Shamrocks in our hair for St. Patrick's Day

Taylor has been really good. She is now gearing up for Easter, wants to plan a party and buy more gifts. She is such a goofball, any excuse to buy presents. She also decided she should do a 3 page journal entry about what she has been up to lately. She wanted me to "mark it" but I told her I would likely give her a big excellent!

Tomorrow, Monday March 19th, 2018, Taylor will have an MRI. We won't get results until the 29th. Mindy and Landon just want to know how her radiation therapy effected things, as she is not where everyone was predicting or thinking she would be at this point. If you compare the picture below with the one above, you can maybe recognize what I mean when it looks like the stroke like droop is leaving Taylor's face. It seems to be getting more symmetrical.

January 28th, 2018 

I am holding out for a miracle. I may be irrational, but I really don't give a rats ass! Sorry for being sweary.

Mindy and Landon spent the weekend packing up all their valuable stuff that they can't replace for the builders in case anything gets damaged as they try to "fix" the house issue. I got to have taylor for a sleepover on Friday night. We played Uno and watched a movie. The little goofball kept burping and then saying, "classy", "I am a classy girl", LOL its my fault as thats what I say to her after she burps normally. She was such a silly nut. She kept telling my husband, the burp police, that it was me that kept burping. 

Saturday and Sunday we spent shopping around, went to the library, etc. Thursday she was with my Mom, Grandma, where they painted shelves for her cousin Kiandra's room, then lunch and shopping. Wednesday she was with Nana and Grandpa and they went to a movie, shopping, etc.

So we will be shaving our heads on Friday (March 23rd) at around 7:00pm, as I still have work that day and need to drive in from out of town. You still can donate to our team. just click the link that is labelled Taylor's Wish Warriors. We are doing this as the funds go to two AMAZING causes, research for cancer in children, as well as Childrens Wish for kids. Thank you to all that have already donated!

Taylor's Wish Warriors

Busy Weekend!

Fat Burger for Lunch

Well Mindy and Landon have found a place. A friend knew someone that had a house with an upstairs suite that was not being used. They have other puppies and cats, but are willing to move cats out and clean everything as Landon is allergic to cats. They are pretty excited to have found a place, although there were a lot of family offering them their homes.

On Saturday Taylor had a playdate with a neighbour friend from across the street, Rosie. It was so kind of Alicia (the Mom)  to reach out and offer to have Taylor over. Again, I can't believe what awesome neighbours Mindy and Landon have.

I then picked her up and we did some running around and out for lunch as you can see above. Taylor gets a lot of laughs and giggles out of burping and farting. So often when I am over at the Thiessen's, or she is at my place we belch super loud and laugh and critique them. I know I am super mature. So I took her to Fat Burger for lunch with my daughter and her friend, and Taylor was belching away. LMAO I was slightly horrified, and told Taylor we did that at home, but not out in public. It was really funny actually, but reinforced my husband always saying what you let slide at home will slide out in public....just don't tell him that!

We were all pretty tired after running around. We weren't sure if it was the horrible weather, or what. Taylor then helped me make dinner, as we were having them all for dinner so they wouldn't have to eat out seeing as they are still in a hotel. We made some butter chicken, and use rotisserie chickens as a cheat. Taylor did a whole chicken herself! I was so impressed and I must say she is way better at it then I am.

Sunday, Taylor, Mindy and Landon came over for a visit at my place for awhile before going to their Hair Massacure shoot, with the lovely Lorna Dancey as the photographer. I can't wait to see the photos. They then headed to Mom's to wash clothes and have dinner.

Monday, or today, Taylor went to school for the entire day. She was really tired. I think because she had such an amazing time last week she might have pushed herself a bit far today. She is doing really, really well. It is a little odd. Her one side of her face seems to be getting a little better, not as puffy or droopy. Her personality is coming back and she is more joking around with people outside just Mindy, Landon and I. She is more willing to go out and do stuff, always wanting a plan of action. She was planning a birthday party for Marley (their puppy) on the weekend, but due to the house fiasco Mindy is seeking some alternative as Taylor is really concerned we shouldn't miss Marley's birthday.

She is also super pumped about Hair Massacure. She wants to go around their neighbourhood to collect donations. She also got the $2 Kali Bear paper Teddy Bears you see up in stores. She wants to sell some of those as well. I will keep putting the link below for those who might want to donate:

Hair Massacure Donate Website

UNBELIEVABLE

Mindy repinked Taylor's Hair to get it more vibrant

We have been pinking and repinking. I need to redo my hair this weekend so it doesn't get too washed out before March 23rd-Hair Massacre day! Again, we really hope people can support us by donating funds to this worthy cause. I will put the link below:

Donate to Taylor's Wish Warriors!

Taylor has been doing really, really well. Last week her and her psychologist discussed her building some routines. They decided that she would go to school on Monday's for a short visit. Taylor had the most AMAZING time! The kids were so super, playing and chatting. There was talk of playdates, and things I think felt pretty wonderful. The school, the kids, the staff at school, parents, everyone has been so absolutely kind and wonderful and thoughtful. Thank you all, you have made this a much easier time, and will always be remembered with warmest thoughts.

So Tuesday rolled around. The background is that Mindy and Landon's neighbours had some house issues, as had Mindy and Landon. The neighbours had their house inspected to try to find the source of these issues. BIG ISSUES were found. This got Landon second guessing if their issue had really not been something larger. So Tuesday Mindy and Landon had some inspections, etc. Basically what came out of this is that they could not stay the night in their house, and would need to leave until it could be fixed. SERIOUSLY! At this point I do not want to share some of the details. At this point the builder (their house is 3 years old) has been trying to solve this problem. 

Required to wear when packing or entering their home

So Mindy, Landon, Taylor, and Marley came to stay at my house for the night. They have been having a really hard time finding a place to rent for potentially 1-3 months, furnished, that allows dogs and has a fenced yard. We are feeling a lot like some horrible movie plot. How does this even happen? 

So they went to meet the builder on Thursday (yesterday) and Taylor decided it would be a great idea to go to school. My husband walked her to school and she had an absolute blast!

Mindy, Landon and Taylor have the most amazing and kind neighbours. They told the builders about their situation, and told them to fix Mindy and Landon's place first-to make it the priority. How freaking AMAZING are these people? No wonder Taylor loves them so much! 

Today the neighbours Mom, Nancy, invited Taylor to hang out with them (Nancy lives with them to help look after their two little toddlers). Taylor went and had so much fun. Tomorrow they may be packing up some of their stuff. So far their whole top floor needs to be gutted and rebuilt. I will try to keep Taylor entertained during this time. She was FaceTiming what my plans were...like I needed to have some pretty cool plans if she was going to consider hanging out with me, LOL. She wants to help Mindy and Landon pack, she is always such a big helper, my little sunshine. Obviously this is something she shouldn't be doing. I will try to update again soon.