Happy Birthday

| September 27, 2016

Fifteen years ago today, my life changed forever.  My beautiful daughter Cailyn was born and I finally became a Mom… someone I had wanted to be since I was 5 years old.

In hindsight, the exceptionality of my pregnancy might have been foreshadowing for what has certainly been an exceptional 15 years.  The last 6 weeks of my pregnancy with Cailyn were spent in a hospital.  I had placenta previa and both Cailyn and I were at risk.  At the time, I would never have guessed that it wouldn’t be the longest amount of time I would spend in a hospital with Cailyn!  She was in Special Care for the first 8 days of her life, most likely as a result of her being delivered by C-section a little more than 3 weeks early.  I got to take her home on the Friday afternoon leading into Thanksgiving!  How wonderful was that!

I sure didn’t anticipate just how intense our roller-coaster ride would be… the “downs” certainly make the “ups” more precious, and the “ups” give us an emotional lift that helps us cope with the “downs”.  There are so many moments over the last 12 years that I have felt pushed to the edge of my ability to cope.  Thankfully, I only need to observe the way Cailyn copes with everything in her life to be inspired to keep going! 

Cailyn – You are truly a gift and you navigate your tumultuous journey with such grace.  It’s not just your health journey that is miraculous… it is your amazing spirit.  We love and admire you!    

Childhood Cancer Awareness

| September 24, 2016

September is a special month in our lives.  It is the month in which Cailyn was born and it is Childhood Cancer Awareness Month!

Some general statistics about Childhood Cancer (from childcan.com and coasttocoastagainstcancer.org): 

1. In Canada, 1700 children and youth between the ages of birth and 19 years of age are diagnosed with cancer each year;

2. 1 in 5 children diagnosed with cancer do not survive their disease;

3.  2 in 3 children will experience long-term effects from their disease and the treatments used to battle them, such as neurocognitive impairments, sterility and secondary cancers; and,

4. 5 is the average age of children diagnosed with cancer.

Currently, there is no “cure” available that can eradicate or permanently neutralize Cailyn’s brain-tumour.  I am so very grateful that the chemotherapy protocol that she has been on for more than 6 years has held her tumour stable.  I’m also thankful that stabilizing her tumour hasn’t required the most toxic drugs that are currently available.  However, the drug she has received was developed in the 1950’s and definitely wasn’t a first line of defense for brain tumours.   

Childhood cancer research is severely underfunded… only 3% of all cancer research funding is directed to childhood cancer research (childhoodcancer.ca).  This is a very tough statistic to swallow for any parent or care-giver of a child diagnosed with a brain-tumour / cancer… paediatric cancers are very different from adult cancers and yet children are treated with the same drugs.  The key is getting money to the organizations that are focusing their research on pediatric cancers and brain tumours…   

Awareness can lead to funding and funding can lead to research.  With the right research, a CURE can be realized!  Here’s to changing the status quo through awareness!!  

Cake

| September 12, 2016

Today I’m thinking about “cake”.  Cake comes in many shapes, sizes and delicious flavours and, although it can be eaten anytime, is often considered an important part of a celebration.  This week-end, we had a family gathering to celebrate two birthdays… my brother Michael’s and my daughter Cailyn’s.  Since there were two different people to celebrate, there were two different cakes:  a sweet and tangy lemon and cream cake; and, a triple chocolate mousse cake.  There were very few of us that walked away with only one piece 🙂 !!

The gathering was extra-special because a dear family friend from Florida was visiting.  He and his family have been in our lives for 50+ years.  It was wonderful that all of our schedules could collide for him to participate in a double-birthday party.

Another celebration that features cake is the “no more chemo cake” tradition at Camp Trillium‘s Family Camp.  At the last camp lunch, cakes are offered to any child who has completed their chemotherapy protocol in the months leading up to camp, and who wishes to participate.  It is a significant production with a couple dozen “special friends” (counsellors) circling the dining hall, beating on pans, and singing the “Happy No-More Chemo Cake” song.  It is sung to the same tune as the Flintstone’s “Happy Anniversary” song. 

Whether the tradition is performed for one child or ten, it is an emotional experience.  The group of counsellors circle the hall a couple of times before each delivery, everyone in the room is singing, clapping and waiting expectantly to see who is the lucky recipient.  The dining hall is filled with anticipation and joy, longing and sadness.  Every time I have witnessed the process, my emotions see-saw with the contrasting emotions flying around the room.

As a result of stopping chemotherapy at the end of March, Cailyn was asked if she wanted to participate.  Her answer was “no”.  I asked her “why not?”  She didn’t respond initially but when I persevered, she said that she didn’t want to be the centre of attention.  I couldn’t help but wonder if it was something more… after all, this wouldn’t have been the first time she was a recipient of a no-more-chemo-cake… she got her first cake the summer of 2008 and she unfortunately appreciates that the wonderfulness of the tradition didn’t guarantee her “no more chemo”.  I told her that I wasn’t going to force her to participate but that I thought her achievement was worth celebrating!!  Just because we can’t predict the future doesn’t mean we shouldn’t acknowledge the preciousness of the moment. 

Our special-friend talked to Cailyn and suggested that she could bring the cake over to her separately, without the fan-fare.  I’m thankful, as you can see in the picture, that she agreed…

Turning the Page

| September 7, 2016

The girls started school yesterday and I think the balance of emotions was more positive than negative!  They were definitely looking forward to seeing their friends but they were both a little anxious.  I think this had a lot to do with “the unknown”.   The unknown is always a little uncomfortable, especially when it brings work, projects, tests and marks!! 

We have many wonderful memories from the summer, and all of them involve experiences that we shared with family or friends.  We did stay pretty close to home to facilitate Cailyn’s rehabilitation but we also thoroughly enjoyed camping experiences at Camp Trillium and four amazing days at a friends’ cottage.  Thankfully, after a little setback in her recovery as a result of a tendon injury, Cailyn’s recovery continues.  Her foot was hurting her today at the end of her first full school day from all of the walking and stairs.  She has agreed with her physiotherapist that she will take at least one of her crutches with her to school tomorrow.

As the school year begins, I know that I have to get my act together and more successfully take advantage of the blocks of time that the girls are at school to move forward professionally.  I have learned just how hard it is to live in a professional “compartment” when personal realities are overwhelming and consuming.  I am so very thankful that we have a break from our weekly trips to the hospital for Cailyn’s chemo treatment.  I wish that the physical break automatically ensured that there was an accompanying mental / emotional break… but anyone on this kind of journey knows that this is not the case.  It’s these moments that you appreciate the wisdom of the individual that coined the proverb, “once bitten, twice shy”.  If you’ve heard once that your child’s tumour has grown, you are always aware of the possibility! 

That being said, I was very impressed with wisdom that my cousin forwarded recently… “if something isn’t going to matter in 5 years, don’t spend more than 5 minutes worrying about it now”.  I liked it enough to write “5 X 5” on a bright pink sticky note and put it at eye level on my fridge.  It sounds a great deal like the wisdom my Mom has shared hundreds of times with me… “don’t cross the bridge until you get there”.  

So… I’m going to do my best to use this wisdom as a tool to focus my attention on things that I CAN do and on differences that I CAN make… stay tuned!! 

Next Chapter!

| August 31, 2016

BACK to SCHOOL!!!

Well… it’s that time of year.  “Back-to-school” brings a number of tasks and almost as many emotions.  

Where I’m concerned, my exponentially expanding to-do list is warring against my appreciation for this precious time I have with my girls… I cherish these moments that aren’t chopped into snippets of time between school, activities, and homework.  Each summer provides reminders that the girls also appreciate this simpler time… a season when they have moments to just be!

The girls are looking forward to the non-academic components of the school year and are wondering what’s in store for the academic component. We just picked up Cailyn’s timetable for her Grade 10 year and she is thrilled to see that she shares classes with a good selection of her friends! As I’m typing this, she’s sitting on the couch, texting her friends, and smiling!  What a beautiful sight!  Unfortunately, she will have to start school with her crutches.  The tendon that was transferred in April from the inside of her left foot to the outside of her left foot has been injured, likely as a direct result of using her foot too much too soon.  I was very concerned about the localized pain she was having last week and was actually thrilled to learn from her surgeon that no permanent damage has been done!  It’s going to make managing all of the stairs a bit tiresome but hopefully only for a few more weeks. 

Lauryn has everything packed and organized for next week, minus her lunch.  The year will be off to a quick start with a couple of her activities but her list of extra-curriculars has been reduced to two… this is one simplification I’ve put into place for this year!  It will definitely make some things easier for both of us and will afford Lauryn some of the down-time she craves.  We’ll see how it works out!!

As much as I believe simplification is an important goal, I appreciate that once the craziness begins and the opportunities to get involved are presented, commitments multiply!  Hmmmmm… maybe I better brush up on all of the organization strategies one can adopt to simplify the everyday “stuff”?!?!

I wish you all a great beginning to the new chapter that awaits us!

Family Camp

| August 16, 2016

We’re back from Family Camp at Camp Trillium.  It was the parents’ turn to experience the wonder found there!  At Family Camp, unlike Res camp, all activities are optional – families can participate to the degree they wish.  The activities that are planned provide both the opportunity to laugh and, more importantly, to connect with others through fun.  Sharing in the fun paves the way to communicating feelings and experiences that result from our exceptional health-care journeys.  

I feel that lasting friendships develop between people with common interests and/or experiences and it takes time for the bonds to form.  Our Family Camp experiences have modified my understanding, so I now feel that the amount of time required to develop a lasting friendship depends on how significant is the interest or experience.  The deeper the significance, the less time required to create a meaningful bond.  I have developed lasting friendships with people after one session of camp.    

A frequently acknowledged fact of Camp is that we all feel free to share our fears and concerns about our crazy journeys, with each other.  We spend most of our time laughing or playing games but there is also a space within which we have the freedom to discuss the specific challenges that go along with the journeys.  This freedom prompts a typical topic of conversation:  our difficulty explaining to our friends and family what it feels like to be on this kind of crazy journey.  Some time ago, a dear friend of mine asked me why she didn’t know about a particular, troubling situation Cailyn was in.  I simply responded that no one really wants to talk about this kind of stuff over coffee or a glass of wine.  Talking about fears and concerns makes for poor conversation.  So… we strive to stick to safe topics… even if the people we are with are truly dear to us.  The fact that these are also the people that we’d like to have understand us the best, is just one of life’s mysteries. 

I am thankful for our time at camp.  I am thankful for the memories created there with Camp friends, new and old.  I continue to be inspired by the amazing counsellors and camp staff who make camp possible and special for all the families.

I’ll finish off with the end of the camp-fire song… “May you dream of love, peace and hope, and may all of your dreams come true!”

#whatittakes

| August 11, 2016

Today is the 12th anniversary of Cailyn’s diagnosis!   I’m still realizing what it means for us to have heard the words, “your daughter has a brain-stem tumour”. Navigating uncharted waters, trying to remain hopeful when there are more questions than answers, has easily been my most daunting and exhausting challenge. We have been flung into a world where the “win” is crucial, the foe is unpredictable, and the competition is fierce.

Have you seen the SportChek commercial, #whatittakes? I absolutely love it. The message is essentially a wish that the listener be challenged to their core, because it is at this point that we have the opportunity to achieve brilliance. They are fittingly airing the commercial in conjunction with the Olympics. You don’t need to watch the Games for too long before you hear amazing stories of athletes overcoming significant hurdles.

I get emotional every time I see this commercial… it commands my full attention. As I watch, I think about the featured athletes and marvel at what they have accomplished.  I also think about Cailyn and her fellow warriors. I understand full-well that their accomplishments are no less marvelous.

May their futures be brilliant!!!

Stepping Up

| August 5, 2016

I had the opportunity last week to speak to a group of Masters students on leadership.  After I spoke with their professor about her expectations, I was inspired to talk about the idea of “stepping up”.

As a student, you learn many things.  One of the life lessons you learn when you transition to the “real world” is that applying your knowledge is often more complex than learning the theory in the first place… and, moving from theory to practice isn’t necessarily intuitive. 

This is when the concept of “stepping up” is critical… to move from theory to practice you have to step into the uncomfortable unknown without a guarantee that you’ll be successful making the leap.  

I’ll always remember being given the opportunity to improve a manufacturing process the summer after I completed my Masters degree in Statistics.  I was expected to use the statistical tool of Design of Experiments – the topic of my thesis.  I strongly expressed my concern that I had only studied Experimental Design… I had never seen or been part of a team using this statistical approach to improve process quality.  I was sincerely terrified of letting my sponsor down.  

I didn’t have time to learn how to facilitate a problem-solving session or how to effectively engage the process experts whose knowledge and experience were critical… I just had to do it.   And, although it was the most uncomfortable situation I had faced at that point in my life, the experience provided life lessons I have relied on ever since.  

To see leadership in action, the same action of “stepping up” is required.  It’s not enough to be a good communicator, you have to actively use your skill of listening and expressing to facilitate a team towards a goal or vision.  It’s not enough to understand the concept of delegation, you have to respect the real strengths of your team and ensure that the right people have the right responsibilities. 

In both our personal and professional lives, the difficulty of stepping up is correlated with the difficulty of the challenge.  The harder the challenge, the harder it is to step up.  (Sadly, these are also the moments we would most willingly embrace someone else taking charge!)  Thankfully, every time we “step up”, we grow both our abilities and our confidence, which, in turn, grows our capacity to contribute positively to dealing with our challenges.

This is the message I really wanted to impart to the students… it’s not enough to have a skill or an understanding – you have to be prepared to step up to the critical challenges when the outcome is most important to you or your team.

Here’s to “stepping up”, especially when it counts!! 

Long week-end

| August 2, 2016

The long week-end is officially over and half the grains of sand in summer’s hour glass have passed.  The week-end started with a bang and ended with a whimper. 

Lauryn and Delaney, her beach volleyball partner competed in their first beach provincial championships on Saturday.  It was a rocky start… Lauryn had slept very poorly on Friday because she was sick and couldn’t stop coughing AND the weather in Toronto was rough, with wind and rain.  Thankfully, the girls were only referees for the first match in their pool and one of the other parents, who was actually prepared for the rain, let Lauryn borrow her rain coat.  (Thank you, Tereza!!) 

I was certainly feeling sorry for Lauryn… on a day that she wanted to feel her best, she certainly wasn’t!  That being said, my advice was a combination of empathy and tough love… in short form, be gentle with yourself but try as hard as you can!  Watching their first pool match, I thought, “well… their day could be finished quickly”.  However, they rallied in their next matches and earned their way to the gold medal match.  The girls met the team they had lost to at the beginning of the day and finished with a silver medal in their division.  What a wonderful reward for perseverance!

It’s fascinating how differently we can perceive things.  I was so proud of the girls and went to hug Lauryn in congratulations, especially knowing how she had risen above how she was feeling.  She was in tears, apologizing for missing her last serve.  The growth in their play as a team, across the season, is truly remarkable.  In the moment, however, she was only focused on her mistake.  Why do we do that to ourselves?  She appreciates in hindsight that it’s unfair to do.  Wouldn’t it be great if this lesson could stay with her!!??

When we got home, I realized that I was feeling a little off… by the time Sunday morning came around, I was into a full-blown cough and cold – only feeling capable of managing the bare necessities!  Thankfully, the girls exercised some initiative and were quite happy with their downtime.

Although I’m not going to dance any jigs today, I’m focusing on the positives!!!

Here’s to a fantastic second half of summer!!!

Whew

| July 28, 2016

I had my MRI yesterday and am very happy to know that my tumour is still stable.  I actually asked the doctor if he was sure it hadn’t gotten smaller… and he quickly assured me, “No”.  At least I tried!

Walking along the corridors of the hospital where I had Gamma Knife radiation a few years ago is a very interesting experience and sparked some contrasting emotions… 

First, I am so glad that I’m on this end of the treatment and that the growth in my tumour is still stable since having the radiation. 

Second, I’m very appreciative that this treatment was available for me, considering the risks associated with other approaches, but being in the hospital reminds me of how difficult this experience was for me physically… it was more traumatizing than labour without an epidural.  Getting the head gear screwed into my scalp, partnered with my initial desire to minimize pain killers, was a perfect recipe for uncontrollable pain over 10 hours.  The discomfort was worsened by the “checks” the medical professionals had to do to ensure that the frame was still secure… it involved holding on to the frame and shaking it “gently”.  I understand that the process has been dramatically improved since I went through it.  Thankfully, I’ve heard that the head gear has been replaced with a mask.  That is truly fantastic for anyone who has to go through it!  That being said, I’m hopeful I don’t ever have to test it out!

Third, I remembered back to being inside the cylinder of the machine and holding on to my “Hope” rock and repeating over and over, “Cailyn has gotten through worse; Cailyn has gotten through worse; Cailyn has gotten through worse”.  As I was focused on this mantra, I was dripping oceans of tears… I know I was feeling the pain but I was also crying for her.  I appreciated in this moment that my little bit of hell was a fraction of what she has had to deal with.

I would like to say thank you to my amazing parents who came along with me yesterday.  I thoroughly appreciated our celebratory lunch on the way home and I’m so grateful for their steadfast support and love!