This time last year..

Hello to all of our friends and family!!

Apparently i've been slacking a lot when it comes to blogging! I get people all of the time asking when the next one is going to be posted! I love you all for that.. seriously!
I'm sitting here watching the Polar express and trying to find every last ounce of christmas spirit I can! Maybe it's just me, but with no snow.. it just doesn't feel like christmas!  Perhaps that's just my inner child being a whiny baby.. i'm sure you are all saying to yourself "this girl is nuts!". Maybe it's because I can actually tell people I had to walk in 4 feet of snow too and from school.. and yes, it was up hill.. (Durham street has a hill or 2 haha!).. but I survived it and loved it!!
Hayden is doing quite well these days! She had clinic on the Nov. 28th and sadly her neutrophils (an inportant cell that fights infections) had dropped from 0.5 to 0.3.. so we had to hold her chemo for a week and allow her counts to recover a bit. We went back again this past friday and they jumped up to 0.9! Still low, but at least she can continue on her bedtime chemo again.. and she was also able to have her flu shot! Not many people get a flu shot.. and that's a choice only you can make for yourself.. but i'm honestly glad hayden could have one.. maybe this will protect her a little more from the cold and flu season!!
We got word that her next treatment will be on christmas eve.  She will recieve a lumbar puncture (that she will be put out for) and also Vincristine.. her regular clinic chemo.  We go at 8:30 in the morning  that day.. so i'm hoping we can get out of there in good time and that she is feeling good enough to travel to to Mount Forest that night! She usually does feel good afterwards.. just groggy and extemely hungry since she can't eat all morning until after the procedure!  So its not the most ideal day to have treatment on.. but we do what we have to do in order to get this kid better!! As long as we can see all of our family at some point over the holidays, then I will be happy! The one thing I haven't been able to do this season is to take Hayden to the mall to see Santa! Her counts have been a little too low, so the scared momma inside of me has kept her away from the germy malls! She may be scared of him anyways, who knows!

I can't believe that 2014 is coming to an end already. 

This time last year we started noticing things weren't right with Hayden and her health.  It was around this time in december of last year that she had fallen off her high chair and started limping. I thought maybe she had just bruised her hip or leg. She was having sleepless nights while she was up screaming at the top of her lungs cupping her jaw.. almost as if she had some teething pain.  She started to bruise really badly as well.. Once after she bumped her head on a kitchen table and her ear lobe bruised, and once from falling into a padded couch when she bruised her eye and cheek.  I remember taking her to Port Huron to go christmas shopping.. and through the limps she was running around as happy as could be.. and even sat on santa's lap and had a big smile!
Getting towards christmas she developed a horrible cough. And no matter what I did to help her.. nothing was working. On christmas day night we took her to the emerge in my home town. My sister came with me and kept a very busy Hayden occupied for me by walking the halls of the hospital with her.. and giving her cheesies to feed her hunger!!  After we FINALLY got seen by the doctor, it was determined that Hayden had a cold. So they gave her a shot of steroids to help her swallow better and a dose of tylenol.. and off we went.  She had a great christmas with both familes that year!  Shortly after new years eve her cough still hadn't left and my heart continued to break for her. I took her to a pediatric walk in and the doctor said the exact same thing the other doctor said.. it's a cold or bad virus and to rotate advil and tylenol and it will eventually go away. I had mentioned to the doctor that I had noticed she had a small pea size bump on the back of her neck and he said it was a swollen lymph node.. likely from the cold virus.   So finally on January 4th.. I took her to the emerge at Childrens Hospital here in London. She had developed a fever of almost 40 degrees while I was at work.. so enough was enough.. that was the final straw! In the back of my head I kept thinking it's an ear infection and they are going to give her meds and we will be home in a few hours!
Not so. We were there for 10 days. Everything I had noticed developing in Hayden were signs and symptoms of Leukemia.. I just didn't know.. how would I? How would anyone?? You wouldn't notice them because they easily could have been teething pains, or a bruised leg, anemia, or a simple viral infection!
 What I had hoped was just an ear infection.. was way worse then I could even imagine.  Leukemia.  They told me that my bright eyed, curly blonde haired beauty most likely had Leukemia.  I felt like my world had crumbled in that instant. I felt like my heart was actually broken, and couldn't find the words to say anything at all. They kept asking me if I needed to sit down, or of I wanted a hug, or if I wanted anything.. but I couldn't even move. At that point in a nightmare I would normally wake up.. but I was already awake and living my worst fear.  Often at night I would cry myself to sleep, looking up at the sky and would wonder why God had chosen Hayden for this.  I was angry at the world, and would cry when I saw healthy happy families getting to do things that we weren't able to do. Simple things like grocery shopping. I haven't taken Hayden grocery shopping in over a year.
Eventually, the anger stopped. I have now realized that this happened to Hayden because God knew that  she's strong enough to handle this. She's the toughest little kid I know.
I've realized a few things this past year...
1) Leukemia sucks. Cancer sucks. Any anyone who has to go through it.. whether they win the battle or not.. will forever be a hero to me.
2) Life isn't easy, but it's worth it. There were days when I didn't want to stop looking at Hayden in case I missed something that could be a memory in my head forever. I've since realized that this is our life.. and to not dwell on what scares the crap out of me.. but to look ahead and think about where we are going with all of this. Having a positive attitude can make life so much more fun.
3) That our families rock. I didn't just realize this.. but I had to say it again.. and will say it 1000000 times more if I have too.
4) Kids are amazing. Ya, ok.. the screaming kid in mall isn't quite as wonderful.. but wow.. the kids we have had the chance to meet this past year are truly amazing.  These kids have to deal with something that some luckily may never have to deal with in their lives. They have to know the pain and suffering that comes with being so sick.. yet still smile and push through. 
And last but not least.. 
5) Hayden's still here and is still fighting onward!  As soon as I heard the word cancer come out of the doctors mouth.. I automatically assumed the worst. BUT, as scary as cancer is.. it is beatable. There are many doctors and nurses that will do any and everything possible to make sure that she stays right here where she belongs. They promised me that they always have another plan if something wasn't working the way we wanted it too. We put our daughters life in the hands of these amazing people. People who go to work every day not knowing what they have to diagnose or treat that day. People that have confidence in not only themselves but us as parents taking care of Hayden at home. People that give the worlds best hugs at just the right times. People who will roll around on the floor with Hayden just to ensure she has a smile on her face. And people who care with every ounce of their being about Hayden and her treatement, and want as much as Jon and I do for Hayden to make a full recovery from this horrible cancer.

2014 definitely isn't likely to be listed as one of my favourite years yet.. but thanks to all of your love and support.. we got through it! 2015 is just around the corner, and I can only hope that it bring lots of happiness and health not only to our family.. but to yours as well.
You have all helped us get to where we are in her journey, and we love and appreciate each and every one of you for thinking of us and keeping us in your daily prayers and thoughts! 
We wish you all a wonderful christmas season and that you get to spend it with all of the people you love! Spend it making lots of memories you can cherish and reminisce in years to come! We sure will be :-)
I will write again in the new year!  Be safe on the roads this season... and please be responsible!!
Lots of Love always,
Lindsay xo

Hayden almost exactly a year ago, one month before her diagnosis.

Hayden and Santa in Port Huron last christmas!  Its a picture of a picture.. sorry for the flash on Santa's beard!

 

 

 

 

 

 

 

Hayden - Christmas 2014 (Sorry her arms are blurry.. it was a filter on my phone that did it haha)

 

Maintenance acheived :-) Time to be thankful!

Well, it's 1:30am and i'm not sure if it's because of the nap I had earlier today, the tea I had while watching Grey's Anatomy from last week that was pvr'd, or the million thoughts going through my head tonight.. but i'm wide awake.. so it's blog time!
After a 3 week wait.. we were finally serenaded by our awesome nurse case manager doing the "Welcome to Maintenance!!" dance last week! Going into Friday's treatment I was under the assumption that her neutrophils were likely going to be low still since just a week before they were only at 0.2.. but Hayden proved us wrong.. she was at 1.1 neuts, and we were finally in Maintenance. My heart was just about ready to jump out of my chest! Our nurses were cheering and dancing in excitement for her, it seemed that anywhere we went in the PMDU someone was congratulating us on reaching maintenance. I'm so excited for her, for us, for everyone that loves this kid. All anyone wants for Hayden is a normal happy life.. and she is on her way.
Some people may not know what maintenance means.. and might also wonder how being in maintenance (still technically getting treatment!) could potentially give us the feeling of a normal life again. Well, it means that Hayden now only has to go for in patient treatments once a month! She will still be getting at home medications given by yours truly, and most of them will be until she's done treatment... but at least we are home more then we are at the hospital! We were told her end of treatment date will be May 2016.. yay!
Oh - and another perk of reaching maintenance .. her hair is starting to grow back! I'm a little too excited about this. I joke that i'm going to try putting pigtails in her hair soon!! It's blonde.. and soft.. and perfect.
Maintenance also means that I don't have to bubble wrap her anymore - well as much.. who am I kidding.. i'm still going to bubble wrap her.. likely for the rest of her life! She gets to return to her amazing babysitters in the next few months, which i'm so excited for.. and she can even get the flu shot to hopefully help her out a little bit during cold and flu season!  There's never a full guarantee that it will help 100%.. but any extra help to keep her healthy and out of the hospital - we will gladly accept!  Of course I have lots of fears about trying to live a little more normal now. Hayden's immunizations have been suppressed because of chemo therapy.. so I fear her getting illnesses like chicken pox, which can be quite difficult for kids going through cancer treatment to fight on their own and will more then likely be hospitalized for treatment! We were told that most kids have immunizations these days so not to worry too much. When Hayden is completely done treatment she basically starts from scratch and will get them all over again.
With this upcoming weekend being thanksgiving.. I thought i'd do the obvious and write what i'm thankful for!
I've realized over that past 9 month that i'm extremely thankful for so many people in our life.. people who I probably don't tell often.. and maybe people who I tell quite often! This could be lengthy.. and like I said.. i've had caffeine so I could ramble all night if I had too!
I'm thankful for Dr. Forward at Victoria Hospital Emerge, for noticing something wasn't quite right with Hayden beyond what I thought (and still to this day wish) was just an ear infection when I took her in back in January.. she did her job well that night.
I'm thankful for the amazing pediatric oncologists at Children's Hospital that have given, and continue to give, so much care to our sweet Hayden. Each and every one of them has a huge spot in our hearts for doing what they do every day. It can't be an easy job to go to every day.. and I truly believe that they are angels on earth! Dr. Zorzi is Hayden's primary doctor, and she has been truly amazing to all of us over the last 9 months. She knows what to say at all the right times, and let me tell you.. dealing with a neurotic mom like myself is no simple task .. but she does it and does it well! We are most thankful for you Dr. Zorzi :-)
I am thankful for our amazing nurse case manager Julie. She keeps on top of everything for us, deals with my crazy questions, is a shoulder to cry on, and always keeps me laughing everytime we talk. On the day we first left the hospital to come home after diagnosis, Julie sat with me while Hayden napped and let me cry to her. I was scared and still didn’t know what was about to happen in our lives.. she gave me a big hug and from that moment I knew she was brought into our lives for a reason. She is a special person, and I’m so thankful to have her in my life.
I'm thankful for all of the nurses that we've seen.. whether its in the day unit or on the 6th floor. I honestly think that nurses don't get enough credit for what they do. They play with Hayden to make her more comfortable when she has to stay for a few nights due to a fever. They tolerate and smile at a crying kid that just doesn't want anything to do with them anymore. They do things I wouldn't dream of doing.. because its their job to do it. They have so much love for all of the kids that are seen by them.. and I have loads of admiration for them. They truly are super heroes in disguise.
I'm thankful for Child life - they constantly play with Hayden and provide toys, coloring books, movies, and lots of laughs to the kids. Melissa is our Child life rep, and she does her job extremely well! She blows bubbles through the screams while Hayden gets her port accessed, she plays restaurant with Hayden while her vitals are getting taken, she draws pictures with her in the play room while me and the doctors are discussing new phases, and she bangs on a drum singing "we will rock you" while Hayden bangs 2 sticks together because it makes Hayden happy regardless of how silly she looks doing so. I'm so thankful for Melissa and all of the girls in the Childlife department.
I'm thankful for our parents - who have offered so much love and support over the last 9 months to last a lifetime. They have cried with us, and laughed with us.. but most importantly they have stood beside us keeping us strong when nothing seemed to go right. They have never once allowed us to believe that the end of this journey will be anything but a victory. The love they have for us, and of course Hayden, is amazing and truly appreciated beyond words.
I'm thankful for the amazing siblings we were given, and the amazing support they also have shown us. My sister, Jodie, is the one that started the #goteamhayden facebook page and updates you all as often as she can. She reminds me as often as needed that when set backs happen to Hayden, they aren’t forever and that better days are ahead. When Hayden was going through her Erwinia phase, I would call her or face time her crying because my heart was broken. She reminded me that this is all apart of chemotherapy and that this is just apart of what is going to make Hayden so much stronger in the end. I’m so lucky to have her for a sister.  I’m thankful for my sister in law Brianne, who spearheaded the #goteamhayden t-shirts, with help from my father in law Remi and countless others. Brianne also gave me the idea of writing a blog - which I didn't think I could do.. but she promised me that it would be therapeutic.. and she’s right.. it has helped me through some rough nights by allowing myself to pour my heart out on here for whomever wants to read it!   I'm thankful for my sister in law Stacey, who secretly ordered Hayden 2 new Teddy bears from Vancouver because she's just that amazing.  I was going to leave it a mystery to everyone.. but I truly think that people should give credit where credit is due, and what she did for us.. and anyone following the whole "Ted's arm fell off fiasco" helped remind us that we aren't in any way, shape or form alone in this journey.. and that our family has our back 110% of the way. I got nosey one afternoon and called the company that mailed the bears, and of course they ratted her out. As soon as I heard her name I had tears in my eyes. She did something so selfless for Hayden, and put huge smiles on our faces.
I’m thankful for our extended family who have offered us so much love and support during this journey. From all of the hospital visits, to home cooked meals, a laugh when needed or a shoulder to cry on. We love you all so much and are so thankful for you all.  
I'm thankful for my awesome friends that continue to make me laugh and smile daily, whether it be on facebook, by text, or by phone.. or if i'm lucky enough.. in person. They ask how Hayden's doing and genuinely care about all of us.. but also know when I just want to be me and not talk about what's going on in our life for a change. They organized the #goteamhayden bracelets that are being sold as soon as they had heard that Hayden was diagnosed.  I hope they know that I would do anything for them, and love them all so much.
I’m thankful for my husband who has been a rock for me through out all of this. He is such a good father to Hayden. I wish you could all see the smile on her face that lights up a room as soon as he gets home from work. He juggles a lot of stress in his life, and asks for so little in return.. and I’m sure that hearing Hayden yell “DADDY!!” as he walks through the front door helps lessen those stresses. It hasn’t been an easy year for all of us.. but somehow he just keeps pushing through and leads us along with him.
I am thankful for all of you. I am thankful for the prayers, positive vibes, assistance, love, and amazing energy that all of you send us on a daily basis. We have people following Hayden's story from all over and it melts my heart daily seeing messages from people we have never once met that just wants this little girl to get better. We are from 2 amazing towns that have offered so much support to us even though we aren’t currently living in our hometowns. You never forget where you come from.. it defines who you are and the person you become. I still get goosebumps everytime I drive into Mount Forest and see the water tower, and I know Jon is the same way when he drives into Wallaceburg.  Home is truly the best place to be.
And last but not least – I am thankful for the sweet girl that calls me mom. Hayden has been through complete crap over the last 9 months, yet somehow still manages to wake up with a smile on her face asking for bubble guppies and a banana (or 2) for breakfast. Watching her learn new words, and seeing her counting and using her fingers to count, chasing our cats up and down the hallways, seeing her laugh at something Toopy and Binoo have done, and seeing her grow into such a beautiful little girl makes every bad or sad moment seem so small. She has had to give up so much over the last 9 months and doesn’t even know it. She hasn’t been able to be around her friends at the daycare, she hasn’t been able to see much of her cousins because of low counts or sicknesses, she hasn’t been able to have a sit down dinner in a restaurant with us, she doesn’t get to go grocery shopping with me, she isn’t able to take swimming lessons or dance lessons yet, she doesn’t get to do more then half of the things other healthy kids get to do. She has had so many limits put on her that I hope one day she breaks all barriers and lives her life beyond the best of her abilities. I am so thankful for Hayden. I love her beyond words.
We hope everyone has a safe and wonderful Thanksgiving weekend with their family.  Be thankful for your family, friends, and your health.
I'll write again shortly.. xo

This one's for Helanna :-)

Hi friends!
I'm dedicating this blog to one of the kindest, sweetest, and most special little lady.. who is 9 years old and looks forward to reading about Hayden as often as I can post (I promise to write more often!!).  She's also the daughter of our beautiful friend Tracy,  who I have mentioned in past posts - she dressed as a lion on an extremely hot day and made amazing posters for Go Team Hayden at the relay for life...and she also does my hair all purdy.. She pretty much rocks :-)
Hayden has been doing EXTREMELY well in the last few weeks! She has had low blood counts, but you wouldn't have been able to tell! She's running around being the monkey that she is, and always has a smile on her face or a giggle that will brighten up any room.
Recently there was a wonderful event at the Clinton Raceway that was in support of ChildCan - an organization that has provided many families, including us, with parking passes and food vouchers.. and they also help families going through Childhood Cancer with household bills if needed - among many other generous offerings. We were lucky enough to attend the event.. especially with Hayden's counts so low.. but, one of the main reasons it was so special to us was because my cousin Ryan was one of the drivers in the event and he got to wear his Go Team Hayden t-shirt over his racing colors.. which is a pretty big deal, and he needed the approval of the judges in order to do so! Although he didn't technically get a win that day, he did win the heart of our little Hayden!! She LOVED cheering him on.. and i'm sure you could hear "GO GO GO!!" miles away!! Hayden hasn't had many outings in the last 9 months, and getting to see her smile as she picked flowers or threw stones.. or like I said.. cheered the horses on.. will be enough to make my heart content for a long long time.  Thank you to Uncle Ryan and the other 7 racers who donated their winnings that day to ChildCan. I believe they raised $10,000 that day!!
Here are a few pictures from the day:

  Playing with aunt Jodie's umbrella! This was actually used to shade Hayden and Aunt Leah who is just about ready to pop out a baby!!!!

Hayden and uncle Ryan watching the horses in between his races :-)

The drivers all came out for a picture with the childcan kids that were in attendance! Hayden, Ted, and Uncle Ry!

She looks so tiny with the big guys!! 

The kiddo's and the hero's for the day!!!  A great group a guys if I do say so!!

"GO GO GO GO GO!!!!"

Auntie Brenda was pretty awesome that day with Hayden!! She took Hayden all over the place and kept her busy! I know she loved it, but I think Hayden loved it the most!

There's uncle Ryan warming up with his Go Team Hayden t-shirt on! Pretty darn awesome if I do say so myself :-)

 

 

 

So tomorrow.. Friday.. Hayden starts on the dreaded "Erwinia" again. For those of you that are unfamiliar with Erwinia... it's the horrible chemo that makes her feel icky and nauseous. She gets a treatment friday, sunday, and tuesday of this weekend and next. Once Erwinia is over she gets one more friday treatment of a chemo called Vincristine.. and then we wait for her counts to come up so we can enter MAINTENANCE!! Once we reach maintenance (phase 5) she only goes once a month for in clinic treatments until she is all done her protocol! She will still have at home chemo's.. generally before bedtime.. but at least we aren't spending majority of our time at the hospital anymore! Please send positive vibes, love, and prayers during the tough erwinia phase,  and lots of luck that her counts will get high enough (sooner then later) to reach maintenance!!

Also - in case some of you don't know, September is Childhood Cancer awareness month! If you have a gold ribbon - wear it proud to show your support!

On a side note - I read this on facebook and wanted to share it with you all. I can't take any credit for it what so ever, but I sure wish that I had of read this a heck of a lot sooner, and will likely (in the next 15 or 16 months) check back to read this again and again. This is letter that a mother wrote to other "new cancer moms". Her son also went through Leukemia treatments.

By Mary Tyler Mom, Wednesday at 10:45 am

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     
By Pauline Grady
I’ve been thinking a lot lately.  I’ve come to a point in this journey that I am feeling a little lost.  It’s a common issue.  Sam is almost done with treatment, but where does this leave me?  Where does this leave a woman, a mother who worked full time prior to her son getting sick?
I started thinking about the different emotions I have felt since the beginning.  How lost I was, how much I felt that I had found a side of myself that I never knew existed and how I am now feeling lost again.  Lost, found, lost.  It is amplified when I meet the newer moms.  A common phrase I hear when I meet the new moms is “I don’t know how I am going to do this.”  Usually I only have a few minutes to talk to the new moms so my answer is usually “you get through it because you have to get through it, and you will.”  I’ve been told that numerous times when I was sure I couldn’t “get through it” and I’m sure I will continue to hear those words.

As we get closer to Sam’s last chemo visit, Sam’s last chemo pills, Sam’s last steroid pulse, I think about what I would say if I had the time to sit down and talk for a few hours with the newer moms.

**********

Dear New Cancer Mom,
I’m sorry.  I am sorry that you are part of this group.  I am sorry you now have the title of cancer mom.  Your life has changed.  In one split second your world just fell apart.  Allow yourself to cry, it will make you feel better.  Allow yourself to kick and scream and have a tantrum, let it take all your energy, because there are somedays that crying is all you can do for the day.  The fog will lift, I promise.  The feeling you get when you walk into a store or a restaurant, that feeling that everything is surreal, that you want to turn around and walk out because everyone in that place is happy and laughing, it will go away.  In place of that, you will look at people that are constantly unhappy with their lives and remind them of how precious life is.
Stay positive, things do get better, but be a realist too.  Don’t allow people to make you think that your anxiety and worry is not justified.  It is.  Your child was diagnosed with cancer.  It’s a very scary world to be placed in.  Watching your child go through this and watching other children, it’s not something you wish upon anyone….but when you witness your own child and all the other children continually fighting, well….it will change your life.
Document your journey.  Whether it be a journal, a blog, pictures, videos.  Document it.  People may ask “why would you want to document this part of your life.”  It’s a reminder my friends, a reminder of the battle.  Write your child a letter at different times of their treatment so they see the battle in your eyes, as a mom.
There are people that will support you the entire time, and others that just can’t keep up, that are tired of altering their life to accomodate you.  Those are the ones who don’t understantd.  There is no need for you to explain, so don’t.  You have a sick child, there is no explanation needed.  Move forward and don’t hate them for it.  It’s just a reminder of how difficult this life is and that some people chose to step back when things get to rough.
If you have a spouse, spend time with them alone as much as possible, go out on dates when you are able to and take a nap when the opportunity is there.  Don’t complain to much about the little things, it’s not worth it.  Pay it forward,  there are many, many people that will help you.  Some people that you don’t even know.
Swallow your pride and ask for help when needed.  Surround yourself with people that understand and know what you are going through.  No matter how much others claim to know what you are going through, they don’t.  Perhaps they sympathize with us, but they can never empathize.
If the opportunity arises, take sometime for yourself.  Even if it’s a ride in the car by yourself, do it.  Don’t feel guilty.  You are giving 110% of yourself to help save your child.  The worrying, anxiety and lack of sleep is overwhelmingly exhausting.  If there is anything that has caught me off guard this entire 3 years is the exhaustion that comes with the sleepless nights, the hospitalizations, the worrying, the crying and just the fight.
Regardless of the type of cancer, the battle is long and difficult.  Regardless of what others say, this will be a part of your life forever.  Once a Cancer Mom, always a Cancer Mom.  Hang in there.  Keep moving forward.  Head up, chin up.  #onward
Sincerely,
A Cancer Mom


I hope this blog finds everyone well. I hope you are enjoying the nice weather we are finally getting, and I hope all of your kiddos (if you have kiddos) are enjoying being back at school!  By the next time I write a blog, my baby cousin Leah will be a new mommy too! Can't wait to meet baby Darroch and give loads and loads of love to him or her! Hayden can't wait to have someone other then mommy and daddy to boss around!! :-)

Until next time..  :-)

GUEST BLOG: The Toughest Kid I Know Goes To Clinic (by Aunt Jodie)

I will never, ever forget January 4, 2014.  It was a rare Saturday night at home.  I was just getting over the cold of the century and had decided to stay in, read, and watch the Leafs (I’m sure they won ;)).  Lindsay texted to say that she was at the hospital with Hayden (again), who hadn’t been feeling well for a few weeks. The texts suddenly stopped at about 11PM and I didn’t hear from anyone until 1:30AM when my mom called with the news….Hayden was being admitted with what they thought was leukemia.

Leukemia is a scary word – just as awful as the more common term “cancer”.  I can remember laying in bed that night worrying about my beautiful, sweet, precocious girl.  I remember wanting to time-travel my way to London to be with my sister, and I won’t ever forget the sound of my mom’s voice that night (who would have done just about anything to get to London despite a blinding snow storm in Mount Forest).  

I remember watching the clock until I could meet my mom the next morning and head to London.  I remember walking into the hospital for the first time.  And more importantly, I remember walking into the hospital room and seeing my sweet girl playing in the hospital bed with the biggest smile on her puffy face (the meds and IV were already starting to do their thing).

Hanging out with Elmo - Sunday, January 5, 2014

Fast forward….it’s now been seven months since her diagnosis and while it feels like time has dragged, it has also flown by.  We’ve seen seven months of progress….seven months of incredible care from the doctors and nurses at London Health Sciences Centre - Children's Hospital….seven months of friends and family who continue to amaze and inspire us with their love and unconditional support.  

Here are just SOME of the awesome people I'm talking about! 

We’ve seen good days and bad, highs and lows.  And throughout, we’ve seen the beautiful smile on Hayden’s face as she hugs her Ted, laughs at “Hayden movies” or dances along with Ellen.  Hayden is already in phase four of her treatment and her continued zest for life amazes and impresses me daily. 

I try to get to London to see them at least once a month (every three weeks if possible).  During my second last trip there, I took lots of pictures (okay – I always take lots of pictures) and thinking that many of you may wonder what "clinic" is like for Hayden, I asked Lindsay if I could guest blog for all of you.  After asking me “what’s a guest blog?” (haha - sorry, that made ME laugh!), she agreed. 

So, here you go – A Day in Life of Hayden at Clinic. :) 

It always starts with the standard measurements – height, weight and blood pressure….at this stage in the game, Hayden knows exactly what to do and gets on each without even being asked.  (Of course, Ted gets to go along for the ride).

   

And then, it’s Ted’s turn….gotta check the blood pressure before Hayden gets hers done! ;) 

  

After all of the standard vitals are checked, they attach the portacath, which is how she receives her chemo, blood, platelets and IV.  It makes things so much easier (she doesn't have to get her arms poked every time she's there) - however, the nurses in those outfits is kind of frightening if you ask me!  (She, of course, takes it like champ!).

And then…we wait.  And wait.  And wait....

 Lots of visits by doctors (and yes, Hayden knows the drill by now!)….

  

And then it’s off to her room for chemo (thank goodness for iPads and Bubble Guppies!).

And always time for some love from mom. Xo

PS - This is one of the walls in the London Health Sciences Centre on the 6th floor where Hayden always ends up staying....it makes me smile and gives me hope every single time I walk by it. xoxo

Delayed Intensification - Phase 4.

It's been a while since i've updated everyone on Hayden and how things have been going!!
So..
We have reached phase 4 (delayed Intensification), and we were told to be prepared for a rough phase.. and it has proven to be nothing but rough.  We knew that Hayden would have a lot of he same chemo's she has had in the past 3 phases, but this phase started off with 2 of our least favourite ones. The first week she was back on Steroids, which meant that for a week she would be a little angrier and hungrier then normal.. but it wouldn't be near as bad as it had been in the past and that the chubby cheeks and big belly wouldn't return. She did relatively good, and we were happy to get that week out of the way! Up next was the much dreaded Erwinia. This is the one that she got 6 doses of in the span of 2 weeks. We were at the hospital 3 times a week for about 4-5 hours each time.. and don't get me wrong, I love the people at the hospital.. but those are 2 long weeks that i'm glad to be done with.. for now anyways. We of course had to go through the whole nausea and vomiting experience again, but finally after some trial and error with Gravol, Benedryl, and ondansetron.. we think we may be on to something that helps subside the nausea. The Benedryl seemed to be key.. which makes the team wonder if she was having a side effect to the Erwinia.  Regardless of what it is.. we have to endure the Erwinia again in the next month.. so please continue to pray for happy, no-nausea days!!! 2 weeks ago we started the Steroids for the week again. She started off doing super well with them but unfortunately by mid week she just wasn't herself anymore. Yes she was cranky and irritable.. hunger to the nines (cheese, strawberries and chocolate milk were her favourites).. but she was never quite content being somewhere... and often told me she wanted to go to bed.  That started to worry me a little bit. Hayden isn't one to ask to go to bed.. she gladly fights sleep whether its sneaking out of bed to play with toys, calling for mom and dad, or just talking and singing herself to sleep eventually. I had been in contact with our nurse case manager, and she did remind me to keep an eye on her because steroids can actually mask a fever. I started to wonder if something was up, but just thought that maybe the steroids were just being a little more wicked this time around.  I also noticed that she had a scab on her elbow that was quite red around it and often made her cry when she bumped it. I'm not sure how she got the scab.. whether she fell outside, or perhaps a bug bite? Regardless, it was there and looked quite tender.  She was done her steroids that friday and we went up to the hospital that day to have her counts checked. All was well, except her neutrophils (infection fighting cells) were only 0.2 so she was still quite low.. but we had a week to bring them up so on day 29 of the 4th phase she could go on with her treatment.
(Side note: a lot of the time getting treatment means that Hayden's counts have to be at a certain level.. if they aren't.. she is delayed.)
She was wicked while getting her finger poked to do blood work, but eventually fell asleep in a little chair while waiting for her counts. We went home shortly after getting them and she continued to feel off.
Aunt Jodie and Aunt Leah came down the next day to keep us company while Jon was in Cleveland on a boys baseball trip. Hayden had a horrible sleep that night, and was up maybe 3 times crying so I had a feeling that something was brewing. She didn't have a fever, but again only wanted to go lay in bed. I gave my sister a heads up that I had a feeling we would have to go to the hospital that day.
Hayden had a great afternoon, even seemed to be coming around a bit! She played and had some "chips" with Aunt Leah.. but shortly after supper she started to get clingy and started whining again.. and of course.. wanted to go to bed. That was around 6:30, and I checked her temperature and although her temperature was higher then normal, they still wouldn't have called it a fever. At around 8:00pm I checked her temp again and it was 37.4 so it was definitely on the rise from when I first checked it (37 degrees). I did make a call to the doctor that was on call and she said to use mothers intuition.. but suggested leaving her for one more hour and checking her then. In that hour I had packed our bags and toys for hayden knowing full well where we would be sleeping that night. So 9pm had rolled around and when I checked her she was 37.9. I made a call to the doctor again just to inform her that her temp had continued to climb and she told me she would call emerge and make them aware that we were on our way up. 
This is never a fun time when your child gets a fever in treatment.. mostly because I can't give her anything to help bring the temp down! They prepare us well in case a fever does make an appearance. They give us a "fever card", which is basically like a quick pass to ensure that Hayden doesn't sit in a room with all of the other sick kiddos. They took us right in and checked her temp (went up to 38.5) and did a throat and nasal swab, followed by blood work through the port and also from her arm, then took us to get x-rays done on her chest and throat because she seemed to be having a little bit of a sore throat, gave her some tylenol, and immediately started her on 3 antibiotics.  When they do these tests, the only thing we get back right away are her counts from her port and the x-ray results. The x-rays showed a little something in her left lung, but not enough that the entire team agreed it was anything. We had to wait 24 hours to see if anything would grow, and if negative at that time then they likely would remain negative.. but they like to wait 48 hours to ensure that absolutely nothing has grown.  They did get a little concerned after looking at her elbow so they checked it daily.  Nothing came back from any of the tests done which was good and likely meant that she had something viral. We got to go home on wednesday of last week and she is on an oral antibiotic 4 times a day until tomorrow.  She has been nothing but a happy little ray of sunshine since we got home. Finally, my sweet hayden is back!!!!
She was pretty excited that she got to spend a long over due weekend with Grandma and Grandpa Foulon in Grand Bend at the trailer!! She even got to share a bed with aunt Buffy!!  Jon and I went to Toronto with my sister Jodie, best friend Jenny, and my awesome parents to see the Jays play Detroit.. so Remi and Deb were kind enough to take Hayden and keep her for the night! We were all aware of her counts, but they said as long as she has clean hands as often as possible then she can go.. and let me tell you.. I don't think i've seen her smile that big in ages! They sent us pictures every now and then.. and man, they made my heart melt.  Thanks again Remi and Deb for keeping her. She loved every moment of it, and it means a lot to Jon and I that she got to spend some time with you at the tailer!
So as I said, we got to join my family (courtesy of my mom and dad) in Toronto for the ball game for Jon's birthday! He's a die hard sports fan.. but anyone that knows him well knows that he's through and through a Detroit anything fan.. and i'm a HUGE Jays fan! It was an awesome game.. and the Jays ended up winning 3-2!! (GO JAYS!) We went out for supper at Real Sports afterwards (again, thanks to my parents and sister for picking up the tab!), sang happy birthday,  and then came home.  We had a great day away, but man did I miss my little girl!!!
A few weeks ago, I was informed that the business that I had worked at for the past 7 years was going to be closing at the end of Sept., which meant that on top of all of the stress in my daily life, I needed to throw that new stress on the back burner until Hayden reaches her maintenance phase, and then worry about being unemployed and what to do next. I was due to go back to work at the beginning of October, but with delays and what not in haydens treatment I had a feeling that maybe it would be mid october.  Life seems to be tossing us lots of curve balls this year, and I can honestly say that this is my least favourite year yet. Although I know I do need to worry about that stress in the next month or so.. Hayden remains my main focus as  always, and I wouldn't have it any other way! Going through what we have had to go through in the past 7 months has really opened my eyes to a lot of things.  I'm grateful for the past, and i'm grateful for the present, but I'm so excited for the future and to be able to put any of our current stresses and worries into our past.
Hayden is currently on a delay from her fever, but will more then likely be good to go this coming Friday.  This last month of phase 4 is arm injections, more erwinia, and lord only knows what else!  Please continue to pray for Hayden to find some comfort in the next few weeks, and to continue to get better!! We still have a year and a half of treatment.. but thankfully when we are in Maintenance we only go once a month for treatment!

With a little help from some family and friends.. our little miss Hayden ROARED again :-)

Hello friends!!
So it's been another month since I've wrote in here again, but that's only because I've started to lose a little of the stresses I was having and things are somewhat feeling pretty normal for the time being - which means I tend to forget to update the blog! I promise.. I will try to do better!!! 
Hayden is in a phase called Inter Maintenance which is 2 months long. This phase is a few lumbar punctures and we get to stay at the hospital every other weekend for a high dose of methotrexate.. so 4 long weekend visits in total. We go in on a friday morning and if it's a lumbar puncture day then she doesn't get to eat anything past midnight the day before, and no fluids past 9am the day of. She's been doing really well with those too.. and i'm just greatful that we aren't going through the LP's on steroids again!!  We've completed 3 of the 4 weekends so far, with our final one coming up on the 20th. That will be the end of our scheduled visits for over night hospital stays in her treatment!! Once she's done this phase she will go into phase 4 called Delayed Intensification. I'm told from some of our friends that it's a pretty rough phase and will knock her counts right down.. so it's in the next phase that we kindly ask for all of the love, prayers, and positive thoughts you can give to Hayden in those 2 months! She will also have to have the Erwinia treatments in that phase (a treatment every other day.. ugh!) Hayden has done so well with all of this so far that I know she will blow through the next phase with her head held high with that beautiful smile on her face!!
So on May 24th I got to spend a few hours in Mount Forest for the Leukemia and Lymphoma bottle drive that was held at the Beer Store there! Well, it was held at all of the beer stores.. but I got to spend the day in my home town with some pretty awesome people! One of my very best friends (Chloe) works at the beer store in MF and was in charge of the event there! She had a penny table with donations from local businesses and a wonderful bake table that i'm pretty sure she sold out of almost instantly! They had a great turn out, and it was so nice to see everyone donating all of their old bottles to such a great cause. I had a great time sitting with my girls Chloe and Jenn all afternoon, and the amazing feeling of being "home" is one that I know will never leave me.
The weekend after that we took Hayden to Wallaceburg for the relay for life event that was held at WDSS, and what an amazing night it was. It ran from 7pm until 7am, they had many events going all night including track events, musical chairs.. as well as others. The music didn't stop all night, we walked as much as our feet would let us (Jon's Uncle Lee and Aunt Nancy, as well as their kids Owen and Emily, rocked that track for almost the duration of the event!!), we froze our bums off for a few hours over night, but we had lots of laughs, made some great memories, and I had the priviledge to meet some pretty inspirational people who have either gone through Cancer themselves or is a mother of a cancer survivor who knows exactly how we are feeling through all of this. Hayden got to wear her yellow shirt with her blue survivor ribbon on it, and we joined all of the cancer survivors on the track for what was likely the most emotional part of the night for me. They call it the survivors lap, but to me it was the most powerful moment of my life to this day. Jon and I both walked with Hayden around the track, and I had tears running down my face the entire time. All of the people walking that lap know exactly how Hayden feels or felt in the rough days of treatment.. something that I can only imagine, and to see all of them walking together knowing that they kicked cancers ass one at a time was inspiring and gave me a lot of hope that Hayden can and will beat this. They are the ultimate heroes to me for enduring what they had to go through, and for telling others that there is always hope for brighter days ahead.
I want to say a huge thank you to our awesome family for sticking it out that night, and helping raise so much money for such a great cause. We are so lucky to have such amazing families that stand by us every step of the way. 
To Jon's aunt Lisa (she is also Hayden's awesome godmother too), I hope you know that we will never forget how awesome you were in all of this. You lead Team Hayden all night and didn't let us stop even when we had no juice left in us! From the bottom of my heart, I want you to know that we love you so much.. and not just for doing this.. but for constantly being there for us and especially Hayden. You are one of the good people in this world, and we are lucky enough to have you as our aunt and godmother. I've said it before and I will say it again.. everyone needs an aunt Lisa :-) Also, a big thank you to Grandma Debbie and Uncle Kevin for helping Aunt Lisa out with attending meetings, and organizing Team Hayden!!
Before I post some pictures I have to give another huge shout out to my new and amazing friend Tracy O'Brien.  Between her, her awesome daughter Helanna, and her amazing mother.. they made posters for our team site (which we won the award for best decorated site), and Tracy also came dressed as the best Lion ever! She carried a big ROAR sign as we walked the track in the wickedly hot heat too!!! Tracy - you are an angel on earth. You have given hugs after hugs to all of the Foulon/Foster families whenever needed on our visits to your salon, you have the worlds biggest heart, and you are an all around good person. I know we've only met a few times so far.. but those few times will become many as I know i've found a friend for life in you! Thank you to you, your mom and Helanna for being on Hayden's side always :-)
This coming weekend we are taking Hayden, for the first time since christmas, to Mount Forest! I'm pretty excited too. Getting away from the house for a weekend makes things feel a little more normal, and I will take as much "normal" as I can get these days!!

Here's a few pictures from the last few weeks:

Hayden was so excited and happy to be out playing with everyone at the relay for life with no limits or boundaries!!! 

All of our wonderful members of Team Hayden! We love each and everyone of them more then any words could possibly describe! <3

These are a few of the luminaries that were made for Hayden by members of Team Hayden. <3

 These are the luminaries that lit the track for the walkers at night. It was so beautiful!

And now for some of Tracy's (and family) amazing art work:

Aunt Lisa and Grandma Debbie having a much needed break to warm up!!

Also, this past weekend Jon's awesome cousin Ryan, and his amazing wife Lindsay did a very long bike ride called "Enbridge Ride to Conquer Cancer" which is a 2 day bike ride from Toronto to Niagara Falls. Lindsay had mentioned to me earlier in the beginning of Hayden's journey that they will be riding for Hayden and that the money she raised would be donated to Leukemia ALL on the day of the ride. Thanks Lindsay and Ryan for standing beside Hayden in this long journey, and for donating your time and strength to such a great cause. Lindsay also rode that day for her dad who unfortunately lost his own battle not that long ago. He was with her every step of the way giving her the strength and encouragement she needed! Thanks Ryan and Lindsay.. you are 2 amazing people who have the warmest, most kind hearts ever.  :-)

Here they are.. rocking the tight shorts and awesome Team Hayden shirts!!

That's all for tonight. Until next time! xoxo