Monday, 11 August 2014

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 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!!
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!