Taylor is FIVE!!!

Five years ago we were told it was unlikely Taylor would ever make it to five...but if she did her maximum survival was only five years...

It's funny to look back, well I guess funny is a bad choice of words, but it seems like this foggy dream, unreal. I remember vividly everything that happened, but it is just so surreal. Right now at school I am having students write, but part of it is me writing beside them. I started this project unknowingly exactly on Taylor's birthday. My topic was when I first was told that something was amiss. As I was writing it hit me that I was writing about Taylor, her birth, on her birthday. So maybe I am supposed to do this, or maybe its the mind playing tricks, or any of a million reasons. What I do know is that Taylor has made a profound change to my life.

What I find truly amazing right now and in the last few years is how "normal" Taylor is, she is so normal in both looks and behaviour. I guess we all expect her to have more "damage". She has scars, but they are largely invisible. She is still an amazingly outgoing little girl with a million watt smile. She is still a brilliant manipulator, getting people to do things she wants them to do. She has started recently to have "attitude", again so blessedly normal. She seems to be getting a bit more shy when surrounded by lots of people, especially if she is not familiar with them. She got pretty tired and overwhelmed at her birthday.

Taylor is also in Kindergarten now! For now everything is normal. I will try and get something posted of her birthday pictures.

Auntie Leah

Another Clear MRI!!!

Hi Everyone,

It has been a while since our last post, as I like to say "no news is good news."  We have been so busy enjoying life that we haven't been very good at updating this blog.

Taylor had her MRI on May 27th and we received the "all clear" results today.  All the doctors were so happy to see Taylor that they didn't even recognize her as she continues to grow so much between visits.

We are happy to report that all testing has come back very positive with no signs of impact from her treatments, so this is very good news!  We have an appointment in July to have Taylor assessed by the neuropsychologists so we can see where Taylor is developmentally in comparison to other girls her age. We are quite excited and also really nervous to see how she measures up with other girls her age. This is going to be the first "real" way to compare her to other kids and determine if she is showing any indication of potential areas requiring assistance.  As a parent I find this terrifying as it will be our next reality check when things have been so incredibly great these past two years. I know many parents worry when their kids starting school, as this is when parents get validation that their child is "normal" or if they are going to struggle, and nobody wants their child to struggle, but we also know that school can be a tough place to not be "normal".  The difference between us and regular parents is we have been preparing ourselves since Taylor was born to hear that she will struggle, and we have been watching for it every day in the hopes that early intervention will make her more successful. Maybe she won't struggle with everything, but I always think that there has to be something that was sacrificed during her surgeries and treatments that will show itself, its just a matter of when. We are just hoping that any of those struggles are minimal and manageable.  We are entering another realm of the unknown and it is terrifying to think of all the "what ifs."

While we were making our rounds visiting all the nurses and the paediatric oncology unit a mother came out of her room while I was showing Taylor pictures of her from a few years back that are up on a board of former and present patients that have been on the unit.  She commented that she has often stared at this board (as I often did when I was there with Taylor during treatment) and wondered what her story was, so Landon and I started chatting with her and telling her our story while she told us about her daughter's journey.  To make a long story short, she said Taylor's story was exactly what she needed to hear as they had some bad news recently and were awaiting another surgery and some new and scary treatments for her daughters condition, Wilms' disease.  It was nice to be that family and story for her, as I know how important it is to hear the good news stories when there are so many tragic ones happening around you, especially when you are living on the edge.  Overall it was a great day for us!

Taylor is turning 5 this September which is monumental for us since our first discussion with the doctors after learning what type of cancer Taylor had was that we would be extremely fortunate to see her turn 5...and she is turning 5 cancer free this fall!

I know we are biased, but I must say that Taylor is the best little girl and all we could have hoped for.  She has grown up so much this past year, is very independent and has a big personality already.  It is so much fun to get to know her personality quirks, what she thinks is funny, and what she has already found passion in.  She is so well rounded and enjoys things from all over the spectrum.  She can be a girly girl that plays dress up and tea parties, yet she loves to play soccer, ride her bike and scooter, swing on the backyard play set and make us all sorts of food and imaginary things in the sand.  She draws and paints us piles of pictures and has a humongous smile on her face almost all day, every day.  She absolutely cherishes her time with her friends and her family and is a warm and friendly girl that people always notice and gravitate toward.

We are always so grateful for everything our friends, family, and supporters have done for us to help us get here.  We are so fortunate to have all of you in our lives.  Thank you for all of your prayers and well wishes over the years and your continued support.

Love,

Mindy, Landon & Taylor

Riding her tandem bike with daddy - May 2013

Soccer!  Team name "Grey Lions" RAWR - May 2013

Taylor and Finley meeting Tinkerbell in Disney World - March 2013

Cuties with "ears" in Disney World - March 2013

She loves the beach!  Florida - March 2013

More beach fun! Florida - March 2013

Family pics February 2013

Sweet girl smirk February 2013

Santa picure December 201

Ballerina outfit November 2012

A very silly girl - Ballerina outfit, apron, satin gloves, bunny ears and one gold slipper!  She asked what we wanted for supper... November 2012

Fraudulent People

Hello,

I regrettably need to make this post. I was just made aware that someone out there is claiming to be Taylor's mom and asking for a "free" puppy to give to Taylor. This is NOT true. If you ever have someone contact you claiming to be one of us, and asking for money or free stuff, please decline and let us know. We are not asking for anything, we were able to complete Taylor's wish list when we received a devastating prognosis in September 2010. Since that time we received a miracle, which I know we strongly believe is related to all of you who sent prayers, hopes and wishes for Taylor. Taylor has been clear for quite some time, so there is no reason that anyone should be requesting money, or free items for Taylor!

My request for Taylor is only that you continue your prayers, wishes and hopes for her, we need to keep her clear. She is now on a 6 month MRI schedule, which is a blessing. Thank you all for the support you have given us, it IS what kept us going in our darkest times, it kept a light for us to reach for when it sometimes felt like we might be overcome, you helped us keep HOPE alive.

Taylor looooves to swing!

Taylor is not just a slurpee monster, but an ice cream monster too

Taylor now can ride a bike, she can skate too!

Taylor's Auntie Leah

she is still as gorgeous as ever, and has hair.LOL Though she's beautiful without too.

Taylor is FOUR!!!!

Well today marks Taylor's fourth birthday! It seems so long ago, but then so short all at the same time. I remember speeding to the hospital when I got the call that Mindy was "in labour", than laughing at myself as I neared the hospital as I recalled that this usually takes awhile.LOL....of course it did! I was so excited, my baby sister was having her first baby.

It was one of the most amazing nights/days of my life, watching my niece Taylor being born. During Mindy's entire pregnancy I never thought once that something might be the matter with her baby, generally you have a sense, but I can't say, no matter how in tune I feel I am to Mindy that I felt any misgivings.

Everything in the hospital labour room seemed to be going just fine, sure there were things, just nothing out of the ordinary. When Taylor came out I remember my sense of elation and awe, then thinking "Holy crap, she looks just like Landon." LOL I just kept watching though, back and forth from Mindy, to the Doctor, to Mindy and then I saw Mindy realize something was wrong, I can still feel my heartbreaking watching her, I can see her face.

Then the battle raged...

Taylor has fought and won so many battles for a four year old, too many, but she has won, she has defied odds. I feel so blessed to have such an amazing little ray of hope in my life.

Happy Birthday Taylor, Auntie loves you, we all love you!

A new year!

Hey everyone, it's Taylor's mom here, and I just thought I would post and update on a few things since it has been a while since our last post.

Taylor has been fighting recurring ear infections pretty well since before Christmas, poor girl can't seem to catch a break from these pesky colds that keep bringing on ear infections even with her ear tubes.

Our most recent scare was on Friday when her temperature spiked to 39.5 so I took her to the Stollery Emergency and they checked her over and hydrated her (as she wasn't eating or drinking, and had a bout of vomit and diarrhea two days before). They ran a few tests and came up with nothing conclusive other than low platelet counts and sent us for follow up blood work yesterday. I had to take her to the doctor today as she was still fevering and not her usual self and low and behold she has an ear infection AGAIN. No word back on the blood tests...will have to call the Paediatric Oncology folks tomorrow to make sure that is all good (I am praying that it was all good as they were thinking that the low platelets was due to an infection and nothing cancer related, the paediatrician in emergency called a paediatric oncologist to come down and double check her...anytime they can say its normal kid stuff and not cancer stuff I can breath a little easier, which they likely know by now when dealing with parents of cancer kids! I will feel better once I talk to my nurse Clare (not sure what I would do without her).

So, on the health front that is pretty well it. We are all set up to get Taylor her immunizations in February, as she hasn't had any since birth and everyone has told us that it would be in our best interests to get her immunizations up to date as she will need them when she goes to school. Her next MRI is in May (whohoo...a whole 6 months since her last one) which is nerve wracking and a big step in the right direction. They said if they even had a hint of worry they would have kept us on the 3 month schedule, but alas we are now on the 6 month schedule!

Taylor has been going to daycare/preschool regularly and LOVES it. She loves her "aunties" aka. teachers, and it appears that she has cast her spell on them as well...all the kids and staff love her...it would be hard not to with her silly stories and infectious giggle and she is always happy and excited about everything. People at the doctors office this afternoon were even watching her and engaged in everything she was doing...from reading the fitness magazines and pointing things out and commenting to me, to playing on my phone and singing the alphabet song and counting on her fingers, to commenting on everyone that walked by...they had boots, or lunch, or a purse, or whatever she noticed about them. She asked me to rub her belly and yanked up her shirt and layed back in her chair to which a lady across from us let out a giggle, as it was pretty darn adorable. It just amazes me how she can capture an audience and entertain us all with her personality.

Anyway, I have been following a number of other families with children fighting cancer, and learned before Christmas that a friend of Taylor's great aunt had a little one that earned his wings. It has become all too familiar to hear so many stories of people and children fighting this terrible disease. I have heard some amazing positive stories and some devastating sad ones. There are so many people out there that could use our prayers and support!

My plan for this new year is to touch others lives that are in need, as mine has been touched so many times by so many of you over the years with our journey. Stay tuned, I will keep you all posted on what the plan will be, and I will invite you to join me if you want to be involved.

Thanks again for all of your prayers and support!

Taylor's mom,

Mindy aka. Miranda

We are really in need of prayers again this Christmas!

Hi everyone,

Taylor, our Taylor, is doing fabulous. She is fighting an ear infection, but other than that she is absolutely fabulous.

So why do we need prayers? A lady who we came across while Taylor was in the hospital and fighting for her life, helped Mindy, Landon and Taylor in so many ways. She offered us inspiration and hope. I think hope is one of the biggest things a person needs when fighting an uphill battle. We need to know, or at least think we can make it to the top. Often our hope comes from within, but often when we have been struggling for a long time we may get worn down...thats when we need others to give us back our hope.

I especially like to reflect on Mother Theresa's quote “Never worry about numbers. Help one person at a time and always start with the person nearest you.” We are often faced with many that need something, but where do we start? If you could please take a look at Tammy's blog: http://hairmassacure.blogspot.com/2011/12/praying-for-taylor.html

Please help us send out a huge prayer chain for Taylor #2. We need to send them our prayers, hopes and wishes....send them all the strength you can spare as this is a battle!

Love you all, Merry Christmas and a Happy New Year 2012

Taylor's Auntie Leah

Taylor has had another CLEAR MRI!!

Hello,

Taylor had her 3 month scan last friday, November 25th. Of course as always the build up of nerves grew, we all don't really talk about it, to afraid what might happen if we should "jinx" her scan or whatever other crazy thing we feel could happen if too much is said....some of you may understand what I'm talking about, some may not, but needless to say its kind of weird and surreal...no scientific or true logic, just another way to cope. Mindy took her for her Chicken and fries afterwards of course...I wonder though if we may be teaching her a negative thing with "bad things" equalling "eat foods you like, but are not so good for you", but then I think we have worse things to worry about than obesity.LOL Sorry I am a slight tad twisted.

Yes Taylor is a "dippy" girl! It's so crazy getting over how time flies by and how quickly Taylor is growing up. She speaks, she goes on the potty, she can play by herself (not for long, she prefers to socialize.LOL), she eats on her own and grabs stuff from the fridge....She is pretty amazing. Taylor is quick to fit in with others and does not miss a beat. My daughter had her tenth birthday party at home this past saturday. There were 10 crazy little ten year old girls and Taylor was right in the thick of it all, she let all the girl's now in an extreme psyched OMG "we're doing a craft, we're doing a craft" Taylor wiggled into a chair with the girls at the table and began to do her craft (painting a picture frame).LOL Later amidst the gift opening Taylor told Aaryanna all the things she got her "JEANS!" LOL she was just so excited and so sweet you just want to scoop her up and squeeze.

So on Monday Landon began the "phone every 5-minutes" until they give us results routine...LOL They always have been excellent at the University of Alberta Hospital of letting Mindy and Landon know the results. A CLEAR scan was again Taylor's prognosis. Relief, tears and a huge smile on my face when I got the text. It seems so crazy that Taylor has been given this miracle, where the last few year things were so crazy, but I'm not complaining.

So I will add some more pics of Taylor so you can see how much she has grown. She has been doing fantastic. She is extremely bright (yes I know I'm her auntie, but very important and smart doctors have said the same thing.LOL). Taylor apparently after her appointments today at the hospital (for all her routine checks: hearing, speech, etc) was throwing up, so she may have a touch of a flu bug. She has been plagued by lots of colds and sinus infections of late, but then again she is in a day-care/preschool now, which may have added some new fun bacteria.