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Sunday, September 15, 2013

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

Thursday, June 6, 2013

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