Desiray's Journey, one year later

It's July 15th 2014, exactly one year later.  On this date last year everything changed in our lives.  I really think this day will always be a flashback to the scary and uncertain day that really made us realize this can happen to anyone.  I thought I would share how I documented my daughters journey battling A.L.L. (Acute Lymphoblastic Leukemia). 

These photos below were taken only a few weeks before she was diagnosed.  Between her dance competition, swimming lessons and hanging out with her brother.. she was a very busy girl.

It was a Monday morning and we were planning a family vacation for the week but Desiray hadn't been herself the last few days.  She awoke with a fever around 6am and my wife and I knew something wasn't right.  Desiray has a history of urinary track infections so we thought this might have been it and we just needed some quick meds.  I rushed her to McMaster Children's Hospital myself around 7am and we were lucky to walk right in and be seen.  I had no idea what I was walking into, but looking back the rest of the morning was a complete blur.  They tried to asses the problem with many different things before pin pointing this to be cancer in her blood stream.  I couldn't breath, I couldn't talk and I really didn't know what to do.  There is so much that runs through your mind and I don't think it has ever stopped. 

This first photo is Desiray just getting put into a room with a very high fever that seemed like it would never break.  Her brother Landon who is only 1.5 at the time does his best to comfort her.  They were and still are so close. 

Oh those lashes...a few weeks later they were gone...

Oh those lashes...a few weeks later they were gone...

Not only was there a lot to take in for us as parents but also for Desiray.  They have an amazing group of people known as Child Life that help the kids through each process.

Not only was there a lot to take in for us as parents but also for Desiray.  They have an amazing group of people known as Child Life that help the kids through each process.

Desiray spent almost a week in her room before being allowed to leave for a short walk.  When she is neutropenic she cannot be out in public places, any sort of germ can be very harmful to her.  We were slowly learning that our day to day life would be very different.

Desiray spent almost a week in her room before being allowed to leave for a short walk.  When she is neutropenic she cannot be out in public places, any sort of germ can be very harmful to her.  We were slowly learning that our day to day life would be very different.

Desiray stopped taking naps when she was 2, so it was hard getting used to her taking so many naps throughout the day.

Desiray stopped taking naps when she was 2, so it was hard getting used to her taking so many naps throughout the day.

About 3 weeks into the initial intense chemo treatment we noticed this happening quite quickly with Des's hair.

About 3 weeks into the initial intense chemo treatment we noticed this happening quite quickly with Des's hair.

On that 3rd week we were given a LOA to go home for a few hours.  It was nice to return home but Des was wiped out and a fever began again so our visit was brief.

On that 3rd week we were given a LOA to go home for a few hours.  It was nice to return home but Des was wiped out and a fever began again so our visit was brief.

I did manage to get this photo on our back deck, Brave is Beautiful somehow got tagged along in our journey.

I did manage to get this photo on our back deck, Brave is Beautiful somehow got tagged along in our journey.

Her hair was literally coming out in clumps now.

Her hair was literally coming out in clumps now.

Lots of tests being done at all hours, day and night...

Lots of tests being done at all hours, day and night...

I think this day was harder on us than her..

I think this day was harder on us than her..

You gotta give her credit, this girl can pull off a bald head no problem!

You gotta give her credit, this girl can pull off a bald head no problem!

I remember we got a 2 hour LOA from the hospital right when the Paris Fair opened, with all of the driving involved we had a good hour of rides.  It was nice to see her so happy even if it was such a short time.

I remember we got a 2 hour LOA from the hospital right when the Paris Fair opened, with all of the driving involved we had a good hour of rides.  It was nice to see her so happy even if it was such a short time.

By early September we found out that the cancer in Desiray's blood had gone into remission.  This was amazing news for us.  However just because they don't see it, doesn't mean it's not hiding.  After decades of research doctors have found that 2 years was the best timeline for the treatment and lowest possibility of relapse.

By early September we found out that the cancer in Desiray's blood had gone into remission.  This was amazing news for us.  However just because they don't see it, doesn't mean it's not hiding.  After decades of research doctors have found that 2 years was the best timeline for the treatment and lowest possibility of relapse.

Desiray and Mel made the front cover of the Hamilton Spec.  It was the 25th anniversary for Mac, there was a lot of media coverage that day in the hospital!

Desiray and Mel made the front cover of the Hamilton Spec.  It was the 25th anniversary for Mac, there was a lot of media coverage that day in the hospital!

In September Desiray had her surgery to install a port in her chest.  This replaced the picc line in her arm.  It is supposed to make things easier however it would be months and months before the port started to work properly every time.  

In September Desiray had her surgery to install a port in her chest.  This replaced the picc line in her arm.  It is supposed to make things easier however it would be months and months before the port started to work properly every time.  

Our amazing clinic nurse Andrea really makes Desiray's chemo treatments as easy as possible. 

Our amazing clinic nurse Andrea really makes Desiray's chemo treatments as easy as possible. 

Desiray got to participate in her school's Terry Fox run with her cousin Kruz.  At the time she was dealing with a lot of nerve damage to her legs.  She didn't walk for a few weeks at one point.

Desiray got to participate in her school's Terry Fox run with her cousin Kruz.  At the time she was dealing with a lot of nerve damage to her legs.  She didn't walk for a few weeks at one point.

October rolls around and we were lucky enough to get her outside and create this fun little shoot with her brother Landon for Halloween.

October rolls around and we were lucky enough to get her outside and create this fun little shoot with her brother Landon for Halloween.

For the coming months we had many ups and downs.  We spent an average of one week a month in the hospital and many trips to the ER.

For the coming months we had many ups and downs.  We spent an average of one week a month in the hospital and many trips to the ER.

Every 9 weeks Desiray is sedated for a lumbar puncture.  Sometimes they do a bone marrow biopsy from her hip bone too. 

Every 9 weeks Desiray is sedated for a lumbar puncture.  Sometimes they do a bone marrow biopsy from her hip bone too. 

I think the hardest thing through this journey is never being able to plan ahead for anything.  We never know how Desiray is going to be each day, we could be rushing back to the hospital at any given moment.

I think the hardest thing through this journey is never being able to plan ahead for anything.  We never know how Desiray is going to be each day, we could be rushing back to the hospital at any given moment.

After months and months Desiray has a lot of trouble when they access her port for blood and to give her chemo.  It's a lot to go through each week.

After months and months Desiray has a lot of trouble when they access her port for blood and to give her chemo.  It's a lot to go through each week.

can't wait for days like this to be over.

can't wait for days like this to be over.

Des getting fitted for a wig

Des getting fitted for a wig

We are so lucky that Desiray and Landon are so close.  This is how I found them sleeping one night :)

We are so lucky that Desiray and Landon are so close.  This is how I found them sleeping one night :)

My superhero warriors, you can tell she has a fight in her!

My superhero warriors, you can tell she has a fight in her!

This is a recent photo of Desiray and Landon, one year later.

This is a recent photo of Desiray and Landon, one year later.

Love these two so much :)

Love these two so much :)

Last year on July 12th I took this photo of Desiray on the left, we had no idea at the time she was so sick.  I thought I would recreate it this year on July 12th.  I'm so happy I could talk her into this (she really had no interest lol).  Love ya Des!  Can't wait for August 2015!!

Last year on July 12th I took this photo of Desiray on the left, we had no idea at the time she was so sick.  I thought I would recreate it this year on July 12th.  I'm so happy I could talk her into this (she really had no interest lol).  Love ya Des!  Can't wait for August 2015!!