Well ...that's a wrap

I received the call on September 3rd - that was it.  Aly's treatment was over. It was her first day of Senior Kindergarten and her last day of chemo. I was not expecting this.  In my mind she was supposed to be in treatment until early 2014.  I wanted to prepare.  I wanted the countdown - I wanted to document the last few treatments, I wanted to have her "beads" all completed before her treatment was done.  I feel like the end of treatment came as abruptly as the diagnosis did. The one thing I don't miss is the steroids and what they used to do to Aly.

 I had heard other parents talk about how life is hard after treatment is over.  I never really understood that until now.  You would think I would feel great that Aly no longer had to take toxic drugs orally, or by IV.  But that was my safety net. Although I know that some kids do relapse while on treatment - it made me feel safe that she was still getting chemo.  I know she is not a high risk to relapse - but there is still a risk.  I worry about how her body will react to being off treatment - what has changed?  What has been damaged? Anything? Nothing? .....I feel like I am just waiting.  Everyone around me is celebrating - they are happy and relieved.  I was strong during treatment - probably too strong sometimes.  I feel like that strength is gone - I now have no control.  I feel like I am no longer protecting her and she is vulnerable - I feel vulnerable.  It's such a weird feeling.  Friends and family around me want to celebrate - they want to gather and celebrate.  It's too early for me.  I am not person who has strong faith - but I do believe that things happen for a reason and I NEVER want to take her health for granted.  I feel am hesitant to celebrate too early because of the "what if ....."  I need some time to adapt to this new normal and have our monthly visits with strong blood counts.  Once I slowly leave this storm behind me I can begin to think about celebrating.  I think I will put it off until the Summer.

I didn't cry that much when Aly was going through treatment - there wasn't really any time to cry.  It was one of my rules "no crying in front of Aly".  Not many people followed that rule - but I felt it was important.  She needed to be strong, she needed to see me strong.  When she was scared she always looked to me - I couldn't look scared - I needed her to know it was all going to be okay - I had to smile.  Since going to Camp Trillium and now that she is done treatment - I find myself being much more emotional.  I could cry at the drop of a dime.  I was asked to say speech at a recent fundraising walk to raise money for Leukemia. "No problem" I said, I will talk.I have talked about Aly a lot, both privately and in public.  I've got this.  I was even so confident that I didn't write a speech.  Why would I need to write this down - I have lived it. Well I think I got 2 sentences in - I picked up Aly as I introduced her and that was it.  Standing in front of approximately 150 people I started to cry. When that happened - I could see the look on people's faces.  They were there walking to raise money because they had a parent, spouse, or grandparent that was diagnosed with Leukemia - they weren't expecting a child.  As I was speaking - I was looking around the crowd and I was not the only one with tears.  I was able to compose myself and continue - and I can't recall if it happened again. Although I was not comfortable crying in public - I got over it quickly.  It was a hard time for me and I am not sure it really sunk it until it was over.  

I wasn't working while Aly was in active treatment, so it became my job.  I logged her counts, I knew the doses of her meds, the rates they ran the IV and every single vital they took. Not only did I record them - I graphed them.  What else was I to do at 2am when I was wide awake in a hospital room.  I took it seriously - I must have pushed the emotion aside - I always wanted to know what was next.  I guess I bottled up 2.5 years of emotion and it was bound to come out.

CAMP TRILLIUM

I think I was more excited than Brian and Aly ..... but I was looking forward to going to Camp Trillium.  I never went to camp as a kid and regardless of what my mom says, I think I would have liked it.  Okay maybe not when I was 8 or 9, but definitely when I was a bit older.  I had missed the registration date for last summer, and I was quite upset that we didn't get to go.  When I received the confirmation in the mail for this summer - I was so excited.  I was even more excited to know that we were going at the same time as another family we knew from clinic AND we were sharing a cabin with them.  I chose the last week available for camp - I thought it would be a great way to end the summer.  We had a busy summer this year, and I felt like it was the first real summer we were able to enjoy.  We did have some visits to the emergency room and a couple of admissions, but nothing serious. We went to Disney, we went camping, Aly and I went to Blue Mountain with some good friends and now it was time for camp!!

We packed all our gear, followed the list provided by Camp Trillium and we were set!  We headed to Prince Edward County and parked our car just outside Wellington in a farmers field. They loaded our stuff into the boats and we were off!  I was enjoying the moment - the sun was shining, the wind was warm and everyone in the boat was excited.  What I didn't realize, was how emotional this week was going to be and it all began as the boat turned the corner and made it's way toward the dock.
The dock was full - - counsellors ( at camp trillium they call them special friends) were all dressed up with a Dr Seuss them ... jumping up and down, waving and full of excitement.  It was a bit overwhelming to me to know that a camp like this exists.  I am sure every camp has a similar experience  - where life long bonds are formed, a team of counsellors and staff dedicated to making your time at camp memorable - - but this camp is different, and it was evident the moment I saw it.  I was struck with emotion as the boat docked.  The staff had definitely done their homework.  Aly's special friend walked right up to her and said - you must be Aly "my name is Brittany and I am going to be your special friend for the week". Aly immediately went to her and gave her a big hug - thank goodness I had my RayBans on!  She walked us to our cabin then gave us a quick tour of the camp.  We arrived just after 4pm, so we only had a little time to settle in before we headed for dinner.  The cabins were far from luxurious, the food was cafeteria style - but everything ran on a schedule and it was a well oiled machine.  For many years the Canadian Cancer Society used to provide funding so that Camp Trillium could operate each year.  They no longer provide that funding - actually they do not provide any funding specific to childhood cancer.  The camp relies fully on donations from large organization and private donors. ( Okay - rant over .. back to my happy place).

There were activities for the kids and there were activities for the parents - but they were optional.  Most days we participated in events, and there were other days were we spent the day chatting with other parents, napping in the hammock or reading in the shade.  Aly was always with her special friend.  She would wake Aly up just before 8am and each morning they participated in the Polar dip ...brrrrr.  Then she would take her to breakfast - then they were off.  They did crafts, they went swimming, fishing, canoeing, played games and even went on unicorn hunts ( Aly's favourite).  We would meet up with her again at lunch - then spend an hour with her after lunch - then she was off again.  We would see her again at dinner, spend a bit of time with her after dinner ... then they would have a campfire and once that was over, her special friend would take her down the body shop where the nurses would give her her nightly dose of chemo, then she would read her a story and tuck her in.  They would stay in the cabin with the kids until 11pm - that was the parent's curfew.  It was great.

Ok - so back to this campfire.  Each night there was campfire.  The staff would put on shows and they were always full of music and laughter.  On the first night I was familiar with the routine ... as the sun began to set, someone pulled out a guitar and everyone put their arms around the person next to them and began to sway side to side ..... and they began singing the "good night song".  Emotional moment # 2 for me.  Wow - the lyrics were great ..... "when you need someone to talk to, or you just need someone to hold.  Now you know you've got someone to turn to ....."  and "may you dream of love, peace and hope and may all of your dreams come true." The lyrics totally capture the camp experience and challenges that all the families have faced.  In our normal worlds, not very many people can relate to the feeling, emotions and challenges that we go through when your child has cancer.  Except here it is different. Everyone gets it.  These are people you have a bond with - you can laugh with them, cry with them and sometimes you can just stand with them and now what they are going through.

This week was life changing for me.  Sounds intense, but it's true.  It not only gave us time away to relax and unwind - it gave us hope. As we chatted with the counselors, we found out that many of them have been coming to Camp Trillium for years.  They were once campers.  Some of them had siblings who had cancer, some of them were childhood cancer survivors themselves.  They are the ones that gave me hope.  They were healthy, active and intelligent (young) adults.  Some of them were Nursing students or enrolled in pre-med programs.  They were confident, they were intelligent ..... they were leaders and they were survivors.  This is what I needed to see.  I needed hope.  I needed to know that Aly would have every chance of having a normal life, to live a normal life - to go to school - to be a leader and to be happy.  They said they barely remember going through treatment and that they really only remember the good times.  The nurses being nice to them, and always being surrounded by loved ones they would rely on.

I look forward to many more years of memories at Camp Trillium.

A Wish has been granted!

We were counting down the days until Aly's WISH trip and before long the day was finally here.  We headed to Toronto on Friday June 21st where we would be staying the night at the Sheraton right at the airport.  We arrived at the park and fly, dropped off the truck and too the shuttle over the hotel.  I think Aly thought this was the extent of our trip.  When we entered the hotel there was a large escalator that took us up to the check in area - she that it was AWESOME!  We then got settled in our room and headed out to have some dinner.  Aly overheard some other children talking about he pool, so we wrapped up the night with her swimming and playing in the pool.

The next morning we didn't have to get up too early as our flight was not until 10am.  We were greeted at West Jet by an amazing crew and had our own personal escort that took us through security and waited with us until we boarded the plane.  I wasn't sure how Aly would react to flying. Although it wasn't her first flight, the last time she was on a plane she was only 15 months old when we went to Cuba and she doesn't seem to remember that trip at all.  To our surprise she sat in her window seat put on her headphones, wrapped a travel pillow around her neck and sat there as though she travelled often.  It was quite funny.  We were the fist people on board and Aly was allowed to go into the cockpit, meet the crew and ask some questions.  She asked how high the plane will fly, how it stays in the air, how old the plane was.  The crew chuckled at her questions and seemed surprised that a 4 year would ask such questions.

And we were off ...... the fligh was just under 3 hours and when we left the plane were were hit by the Florida humidity. Those around us chuckled because Aly said " mommy why do they the heaters on so high ....:"  Apparently, like her father, Aly does not like the heat!

We were greeted by a lovely English woman from Give Kids the World ( the place we would be staying at) ... and she lead us directly to the car rental place.  We picked out our car and we were off!  It was a short drive to our destination and when we pulled into the secured property, we had no idea what was on the other side of those gates.  It was a little village appropriately named "Give Kids the World".

It was June, so we knew it was going to be hot ....but it was HOT!!!  Well over 100 degrees on most days and really only one cooler night.  Thankfully there was a pool at the resort.  We would wake up early - hit the parks after breakfast, spend a few hours - return to the villa and spend the afternoon swimming in the pool, then return to the park a few nights to see fireworks etc.  Give Kids The World is hard to describe.  Everyone told us how great it was, but you don't truly appreciate everything about it - until you go there.  Volunteers come from all over the country ( ...and probably the world) and spend the week serving ice cream, carrying dinner trays to your table, operating the carousel, helping in the kids spa, and helping out with all the evening festivities.  In a week they celebrate, a birthday, Halloween, parades and they even celebrate Christmas and it includes a visit from Santa and each child received a present.  We would sit in the dining hall and look around at all the families that were there with us.  It's hard to put into words the struggles that so many families have, the strength they have to deal with the challenges they have been dealt and yet how happy, hopeful and inspiring they all were.  I am not even going to go into details about our visits to Disney World, Universal Studio and Animal Kingdon.  What can I say about it - it's magical!  We had passes that allowed us on rides almost immediately.  I don't think we waited any longer than 10 minutes for a ride and all the employees where AMAZING.  Our trip was not so much about Disney - it was about getting away from the crazy life we have lived for the past 2 years.  It was a stress free visit.  I never worried, I lived in the moment and as crazy as it sounds, I was grateful for the experience we have had through Aly's treatment.  So many kids have bigger battles to win, battles that won't end in remission and battles that some of them won't win.  This trip was good for us as a family. We needed to spend the time together outside of our "normal".  We needed to laugh, we needed to see Aly's face the first time she saw Darth Vader - - and later the smile on her face when she went up against him and became a JEDI.

We will be forever grateful to the Make a Wish Foundation for this trip and for continuing to offer this opportunity to families with sick children.

Make a Wish .....and it might just come true.

Well we have our good days, we have definitely had our bad days - - but with all of the struggles pushed briefly to the side, all things can get a little bit bright all because a little girl made a wish!  Now I will have to confess that her original wish was to meet Justin Beiber, and although I didn't force her to change her mind - I did play her a few you tube videos of Disney World and promised her that it was the most magical place on earth.  I won her over when I told her about the Jedi Acadmeny.  "You mean I can meet Darth Vadar ....I can fight him?"  From that point forward she was SOLD!  So she did it - she made a wish through the Queen's University chapter of the Make a Wish Foundation.  They came to meet her, they got to know her ... and they have planned the most amazing trip for her.  We are leaving this week to go to Disney world. I have to chuckle when I tell people we are going to Disney- and how Aly had her wish granted ... and they say "wow, you are so lucky".  Well - - not really.  Trust me, although I am super excited to go to Disney I would give it up in a heartbeat if if meant we didn't have to go through all that we have over the past 2 years. 

I just realized yesterday that we will be in Florida when we celebrate her "Cancerversary".  Not that we will be celebrating her diagnosis - but we can take some time to apprecaite the fact that she has come so far and she is doing so well.  I struggle these days as we have a few friends that are still deep in the fight - - I feel guilty that she is doing so well - - its crazy I know, but when others are suffering, the news is not good and decisions need to be made - I think back to the day we received Aly's diagnosis.  Her doctor said " it's the good leukemia".  And at that moment I couldn't grasp those words.  I thought " did she just saw that?"  Flash forward 2 years - and I get it.  I have often said here that I never want to take her "remission" for granted, but on the anniversary of her diagnosis I will hug her and take the time to appreciate all that she has been through, how resiliant she is, and how proud I am to have such a brave, strong fighter as my daughter. 

Cough Cough Cough

Well last night wasn't as restful as I hoping.  Although Aly fell asleep initially, her cough kept her (and me) up for most of the night.  At around 11pm Aly woke up screaming that her arm hurt and within seconds her IV pump started to beep - the IV was toast.  Fluid was building up along her wrist where the IV was put in, and it was rock hard.  It had to be removed.  The nurses put freezing cream on her other arm in multiple places to ensure they had all areas covered as they prepared to put an IV in her other arm.  After about 40 minutes a crew of nurses showed up and new IV was put into her right arm with no issues and the other one was quickly removed.  I was hoping after this we would both settle down - but no luck.  Aly spiked 2 temperatures last night all that hovered around 40 degrees Celsius (104!!)  This was concerning, but after some tylenol she seemed to cool down a bit.  Her cough was horrible last night.  It seemed that every time she was about to drift off she would cough and cough and cough!  The cough she has is not just an ordinary cough - it is horrible.  It is worse than mine - and mine is pretty bad. The night seemed to pass with one cough after another.  Each time a nurse came into to take her vitals - her temp was up to 40 again.  Before long, it was 5am and we were both awake talking about her cough.  We finally turned on the TV and started our day.  She was first checked out by resident who was immediately concerned with her cough but pleased to hear that her lungs were clear.  Aly's doctor later came in and have a quick check in.  I was concerned about how "yellow" she looked today and it turns out her belliruben (sp?) was quite high on Wednesday so they were going to submit her bloodwork for further testing.  We tried to look at the whites of her eyes to see if they were yellow, however it was very hard to find any white patches on her eyeball - they were pure red.  I was quite worried as I looked over at her laying in bed and she just seemed to have this yellow tone about her. 

The Dr wanted to monitor it closer and if necessary would arrange for an ultrasound of her belly to see how the liver is doing.  The day consisted of a lot of nurse visits, attempts to rest, waiting for decisions on tests/ultrasounds etc.  She made up most of that time drawing, watching movies and finally - eating.  She didn't really eat anything yesterday so I was glad that she was actually eating today.  Aly wanted to have a bath so bad today and I kept telling her that I would take her down to the big bath tub at the end of the hall.  It wasn't until just before bath time that we remembered that she had orders that she was unable to leave her room.  She must be highly contagious still, or they are still taking precautions - but Aly was NOT happy.  We ended up getting a little baby bath and filling it with water and placing it in the shower  - she had a blast ( phew).  I now look over and see that she is fast asleep so that is my hint to go to bed.  Tomorrow will be a busy day - but I am hoping that she does not get any fevers tonight and that we are discharged tomorrow

Admitted :(

Well since our last visit to clinic last week, Miss Aly has not been herself.  It was hard to nail down what the issue was, she was on steroids so the whiney episodes and sleepiness made sense.  It wasn't until Monday morning when she woke up with goopy eyes, that quickly turned into pure bloodshot eyes the following day.  She was sent home from school on Tuesday with what they thought might be pink eye.  I do recall her eyes being sensitive and a little pink that morning, however I was shocked to see what they looked like when I got home from work that night.  The tops of her eyes were pure red - where they should be white.  I took sent an email down to her clinic advising that I thought she had pink and looked for some direction on what we should do.  They suggested that we keep her at home and give her some polysporin drops to help her eyes and let them know if it got worse.  Well that night I noticed it was worse, so I sent a photo to them that clearly showed the red mapping on her eyes.  I finally settled Aly in bed and although she felt very warm her temperature never exceeded 37.4.  In the morning I knew I wouldn't be sending her to school so off to Granny's she went.  I had an early morning meeting, but as soon as I left I asked that Granny take her temperature - 38.4 so I called her clinic and they told me to come down.  They took blood, urine sample and even took extra blood to do cultures on her blood in case she had no immune system.  Before long the results were back and her neutrophils were 0.01 ( anything under 0.5 is considered neutropenic) so gave us an automatic admission.  Her IV was put in and within moments she was receiving fluids and her first round of antibiotics.  If all goes well she will be admitted for 48 hrs and then be discharged with antibiotics to take at home.  This virus is common in kids right now and apparently can hold on for 2 weeks or so.  Since she has been unwell for over a week know, I hope we are half way through it!  Since we arrived at the hospital her eyes have gotten worse, it looks like the redness is spreading and moving lower in her eyes.  They don't seem to bother her too much and they are no longer yucky.  Her ear is apparently also infected, and it seemed to really her bother her last night, but tonight it seemed much better.  Not sure if that is the antibiotic working or not.  The antibiotics she is on are not really to treat the virus as there us not really much you can do for a virus, however it is really to prevent her from getting anything else - especially since she has absolutely no immune system to fight it.  When nurses come into the room they are fully masked and wear an additional robe to protect themselves and Aly - - it doesn't really seem to phase her - likely because she was so used to them coming in to hang her chemo bag and they were dressed as though they were being launched into space.  To think that they are fully dressed in this protective gear, including face shield because they do not want to expose the chemo to their skin - yet they are about to inject it into the veins of my baby - hmmm something is not right here. 

Anyway - - Aly is fast asleep tonight and I hope that she has a good sleep and that she does not wake when the nurses come to check her temperature throughout the night.  Oh I guess I should mention that tonight when she woke from her late afternoon nap - her fever spiked to 40.4 Celsius ( 104 Fahrenheit) - that was a bit concerning, however after some meds it seemed to drop quickly.  I was just glad we were here when that happened and not at home.  Her wee body was so warm, she could have heated a small building.  I will wait to meet with her Dr in the morning to see how she is progressing.  I will be sure to update ...

Not quite herself ....

So poor Aly has been feeling under the weather for sometime now.  She has had a cough that has held on for a month or so ... she doesn't cough too often, but when she does it sounds horrible.  I think it's beginning to get a bit better.  Last week we went to clinic and Aly was definitely not herself.  That morning she was unable to eat or drink anything as she had to have a spinal tap/lumbar puncture as part of her regular treatment - -and she was not happy!  She woke up really early, which was a bad start to the day - all she did was wine for a drink or food or even some water.  I had to say no.  She ended up falling asleep on the couch as she watched TV.  She woke for a bit as I got her dressed and loaded her in the car to head down to clinic.  I noticed that she fell asleep on the way down, and when we got to the hospital she didn't even wake up.  I carried her in from the parking lot and we signed in at the Cancer Centre and walked over to the kids waiting area.  She was still asleep.  I sat down and she lay in my arms - out cold.  I was a little concerned, as this was not like Aly at all.  Even the nurses and other families in the waiting room knew it was out of character for her ... but at least as I was at the right place.  I was interested in seeing what her blood counts were and if the Dr would find anything during her exam.  I think we waited for about half an hour before I had to take her to get weighed and her height measured.  I was able to wake her, but I am not sure if I asked her now if she would recall any of it.  While I was up I took her into the treatment room where they put freezing cream on her arm ( for the IV) as well as on her lower back for the lumbar puncture.  She slept through it all.  I think we waited another 30 minutes before they put us in a treatment room and let Aly lay down.  The resident came in to examine her, and was able to complete the full exam with Aly asleep.  She woke briefly to roll over so a full examination could be completed.  When the resident returned with the Oncologist, she made up wake Aly up and she spoke with her for a bit.  I think she wanted to make sure she was coherent etc.  One of the nurses was concerned that maybe her blood sugar might be a bit low.  After the Dr's left the nurse came in and put in the IV....and yes, she slept through that.  Well most of it.  I think she woke briefly - looked at the needle going in and said "oh ya, that's what I wanted".  Then she drifted off again. 

The nurse took some extra viles of blood to check her cultures as well as her blood sugar.  She also left behind a cup for a urine sample.  Aly continued to sleep until we needed to change room in preparation for her procedure.  She continued to sleep in that room until I eventually woke her as I knew the anesthesiologist would need to examine her.  Brian and I waited in the room until she was sedated then we waited outside until we were able to return to the room.  The procedure was short and the Dr told me it went "beautifully".  Recently Aly has woken up from sedation a bit "wild" - she is whiny, sassy and really moody.  Once the procedure is over she gets IV chemo and needs to keep her head down for about an hour in order to ensure the spinal treatment is effective.  I was concerned she was going to wake and be feisty as usual - but not this time. She ended up sleeping for the entire hour, until I eventually woke her.  When I woke her she was a bit groggy but fine.  I fed her a snack and some juice and eventually went back to the playroom for a bit while we waited for her to have to pee so we could fill her cup and be on our way.  After about 15 minutes - we were off!  Aly spent the rest of the day at her Granny and Papa's and seemed to be ok.  Her blood work showed that her body was fighting something, but the good news is she had the immune system in order to be able to fight it.  That is all I really cared about.