Black Box

| March 25, 2016

My first “real job” occurred the summer after I graduated from my Masters in Statistics.  It wasn’t exactly a “dream job”… although it produced great fodder for learning and success.  

My Dad prevailed upon his VP of Manufacturing to accept me at one of their plants as a summer student.  His desire was for me to help the team improve the quality of the product produced by a newly commissioned plant that was still producing almost 12% off-grade (unusable product), about a year into its life.

After Dad shared his plan with me, I asked him if he appreciated that both of us could look really stupid at the other end of this experience if I wasn’t able to contribute successfully to the goal.  He simply said, “I believe you can do it.”

The day I arrived at the plant, there was no fanfare.  My presence was being tolerated because I was the daughter of the company’s president but I was aware that there were a few strikes against me… I was the boss’s daughter, I was fresh out of school, and I had no experience with the line that needed to be improved. 

Being sensitive to people’s perceptions, it took me a bit to overcome my insecurity.  Then I realized that wasting my energy and time thinking about what others thought, was decreasing the amount of time and energy I had to put towards a solution.  This was a real “a-ha” moment for me.  I can remember telling myself to put all of my negative thoughts into a “black box” and place it on a high shelf too far away to access.  I told myself that I could only look at these negative thoughts when I was completely finished with the project. 

I then got on with the task at hand.  If even a glimmer of a negative thought showed up, I would remind myself to “black-box it”.

Over the last decades, I have had to use this strategy more times than I can count.  The next few weeks will be no different (see “Hope and Fear” in “Life Today”).  I will do my best to “black-box” my fears and stay focused on what I can do to help! 
        

Hope and Fear

| March 22, 2016

Today… hope and fear have been battling each other in my head!  As the day has progressed, I’ve been keenly aware that when my head is filled with hope, there’s no room for fear, and when I’m worried, hope evaporates.

Today was Cailyn’s last chemo before her foot surgery on April 5th.  If the results of her next MRI show that her tumour is stable, her port will be removed and she will get a break from chemo, for as long as it is possible.  My hopeful side strongly shouts “this break will be forever”.  My fearful side interjects the information I’ve distilled over eleven and a half years of conversations with health-care professionals… I can replay these conversations, almost verbatim, but the important point is that they reduce to a strong feeling that another growth in her tumour is definitely possible.

When I focus on being present in the moment, it is easier to stay in my hopeful space.  If I could get my mind to stay in this exact moment, I would be celebrating right now… celebrating the expected improvement to Cailyn’s physical, mental and emotional health, and the increased freedom to our weekly schedules.

However, the peace of these moments gets shattered when I worry about her future… something I appreciate I have very little control over… Will her MRI be stable on the 31st?  Will her port be removed or have to be replaced?  Will both surgeons achieve successful results?  How difficult is it going to be for Cailyn to get around with her left-sided weakness, when she won’t be able to put any weight on her left foot for a minimum of six weeks?  Will she be able to keep up with her school work, especially if she isn’t able to physically get to her classes?  Is she going to commit to all the therapy that she’s going to have to do to rehabilitate her foot to the point where she can use it the way she wants and wear “normal” shoes?  Will her tumour grow?…

I realize that there’s no merit to entertaining these questions as they swim around in my head because the answers will remain unknown until they aren’t… unfortunately it’s easier to say than do…

Because I believe that all positive and constructive action begins with the hope that the action will make a difference, I’m going to do my best to remember to crowd out the fear with hopefulness…

Unique Presentation

| March 17, 2016

I have just had a most interesting experience with Cailyn.  As her school is preparing for their “Relay for Life”, one of her friends asked her if she would speak about her journey at an assembly scheduled to get students involved in the fund-raising experience.

She agreed, and immediately asked me if I would help her create her presentation.

So, we sat down to begin her draft and agreed to three major sections… 1. who am I? (from Cailyn’s perspective, obviously); 2. the milestones of her journey with a brain-stem tumour; and, 3. her greatest hopes for this presentation.

It was very important for her to start with ‘who she is’, because it is through this section that she’s able to communicate how much more “alike” than different she is from her peers.  I actually marvel at her ability to focus on “normalness” when the weekly chemotherapy injections are a constant reminder that she has to deal with things her school mates can’t possibly understand or fully empathize with.  Working on this section with her, I was impressed with both her self-knowledge and comfort level with herself.

I found the second section harder… recording in black and white, the challenges she has faced, makes them very hard to ignore.  It is also misleading, in my estimation, to distill major milestones on her journey down to one bullet point… it certainly doesn’t honour the emotional or physical wear and tear experienced, by anyone.  I have shared a decent accounting of our journey with medical professionals and I figuratively held my breath as her list got longer and longer… I was concerned that seeing everything in front of her would be overwhelming, resulting in her being sad.  Also, as she never wants her challenges to be the focus of anyone’s conversation, I was very surprised at her preparedness to document “everything”.  I believe she accepts that the more she shares, the more likely she is to inspire her peers to get involved and raise money for cancer research.

Cailyn’s hopes are that research will produce a cure for her and anyone else on a journey with a brain-tumour / cancer… she doesn’t want to lose another friend to this terrible disease.  I marvel at her strength to openly share her story and ask for help… I’m so hopeful that this same strength will be her constant companion moving forward.

I appreciate that I shared my thoughts about what her presentation should include and why, but I am humbled by the grace with which she managed the challenge.

What a surreal experience to have with my beautiful girl! 

Title of First Book

| March 14, 2016

I share our healthcare journey with nurses, doctors and residents.  My greatest goal for these presentations is to inspire medical professionals to respect the critical role they play in enabling parents / caregivers to become the strong partners with whom they’d like to work.  There is no question that we want to be viewed and respected as strong advocates and partners.

A key message of my presentation is based on my belief that our hopefulness impacts our ability to step up to our partnering potential!  I know that I only take constructive and productive action if I believe that my contribution has a real chance of creating a successful outcome.  Why would I exert any energy otherwise?

I shared with two of my daughter’s doctors early in her journey, that I thought they could best support parents by giving us room to be hopeful.  One of her doctors shared their hesitancy to contribute to us having “false hope”.  I quickly stated that false hope is better than no hope.  I even recommended that they share the best-case scenario in the larger conversation discussing potential outcomes.

When I am presenting, I specifically ask healthcare professionals to avoid “squashing our hope”.  Understanding the aversion that many professionals have towards supporting “false hope”, I knew I needed to find a way to “get buy-in”.  One evening, as I was preparing for a presentation, I remembered that healthcare providers are actually trained to respect the power of “false hope”!!  During their training, they learn about the phenomenon of placebos.  A little sugar pill can create a positive outcome if the person who is taking it believes that it will help them!

So the name of the first installment of our story is “Hope: The Ultimate Placebo”.  The greatest achievements along our journey have been facilitated by constructive actions.  Each of these actions was fuelled by hope.  I am confident that we wouldn’t have taken these steps if we didn’t
believe they could make a positive difference to the outcome!

Significance of the Dragonfly

| March 7, 2016

I have been asked why I feature a dragonfly on my website…

Dragonflies symbolize “Hope” to me. Shortly after Cailyn’s diagnosis and first surgeries, a visiting friend noted that there was a dragonfly circling me. My friend commented that the dragonfly was bringing us good luck. I held onto that idea like a drowning person hangs on to a life preserver.

A few weeks later, we arrived at a hospital for an appointment with a neurosurgeon who was offering to do his best to remove as much of the tumour in her brain-stem as possible. Cailyn’s situation had worsened to the point that we needed to intervene quickly. I opened the back door of my SUV and into the cargo area flew 4 (FOUR!!) dragonflies. I couldn’t believe my eyes. As I opened up the bag I was going to take into the hospital with us, two of the dragonflies flew out. I actually said to my Mom… “they are bringing us good luck, and this is where we’re going to get our answer!!”

We actually weren’t expecting our “ultimate” answer here. We had been pointed in another direction by experts in both Canada and the United States. But, this neurosurgeon was offering to help us and we had travelled to see him to become wiser about the whole process and its risks.

Through our conversation, and after asking some pivotal questions, we learned about a neuro-surgeon in New York who had a significant amount of experience with the same tumour in the same location in the brain-stem as Cailyn’s tumour. At this time, our neuro-surgeon, who was actively helping us coordinate consults with other neuro-surgeons, had never operated in this location in the brain, and the surgeon we were consulting with had only operated in this location 10 to 12 times across his 28 year career.

Ultimately, the information and support provided by this doctor initiated our consult with the neuro-surgeon in New York, who successfully removed between 80% and 90% of Cailyn’s tumour. From my conversations with Cailyn’s medical team, I am confident that this appointment, beginning with a colourful visit from 4 dragonflies, resulted in us getting the information we required for her to be here today.

Since this experience, I celebrate each and every moment that we have dragonflies flitting about us.  We’ll take all the good luck we can get!!

Just Keep Swimming

| January 18, 2016

I can’t tell you how many times I’ve muttered this phrase to myself over the last few years.  I love the Dory character in “Finding Nemo”.  The wisdom she’s famous for offering is simple, but I think its simplicity is what contributes to its power.  To me, “Just Keep Swimming” means just keep going… make the most of each moment; don’t think of everything I can’t control; and, focus on what I can do.  Obviously, it’s much easier to stay in the moment if you have Dory’s memory problems.  It’s much harder when you are aware of the difficult decisions and serious considerations that come along with the kind of diagnosis my daughter has received.  Having these types of things swirling around in your head turns the swimming into treading water… not only are you exerting a significant amount of energy, you aren’t going anywhere, so you can’t avoid acknowledging and thinking about all of the difficult stuff.        

When I remind myself to Just Keep Swimming, I’m encouraging myself to stay in a “can-do”, hopeful space.  All of my best decisions and efforts along this journey with my daughter have been powered by hope.  This is a year I need to remember this… Cailyn will be having reconstructive surgery on her left foot before this school year is over; and, if her tumour is stable prior to this surgery, we will be stopping her weekly chemo.  Stopping this weekly treatment will be a wonderful break for both her physical body and her emotional well-being.  This wonderful outcome doesn’t make the decision easy, though.  This weekly protocol provides a “safety net” against another growth in her tumour.  Losing this safety net is the stuff of nightmares!  Ask any other care-giver faced with the same reality.

Yep… I imagine I’m going to be quoting Dory very frequently…

Hand of Cards

| January 15, 2016

I’ve learned that it is very rare to find someone who is thrilled with every card in their hand of cards.  My older daughter is no exception. 

In November 2012, Cailyn learned that we weren’t going to be stopping her weekly chemo regimen in two years.  Considering that she had been doing weekly chemo since February 2012, she was devastated by this news and told me that her “life officially sucks”.  A few weeks later, I was asking Cailyn to focus her attention on the math sheets she had brought home in preparation for a test.  I asked her to choose a couple of questions per section and to write out the answers formally with a clean sheet of paper. 

Over thirty minutes later she was still sitting there, having done nothing except complain about having to do homework.  I shared that she could have been finished if she had applied her energy towards doing her math.  Next time I came over to look at what she’d done, I noticed that she’d scribbled answers in the margins of the prep sheets.  Not only was it difficult to decipher, she had been unsuccessful showing that she knew the material.

I asked her to honour her strengths and take the prep seriously.  She looked at me indignantly, with no intention of following through.  I had a lightning bolt thought that this wasn’t about any specific homework… it was about the fact that she thought her life sucked and she didn’t care how well she did on her math test.

I changed my approach.  I sat down and told her that I appreciated how difficult it must be to care about something like math when her life sucked.  She nodded.

I told her how sorry I was that she had such difficult and unfair cards in her hand, and that I’d take them away if I could.  I also shared that everyone has crappy cards, even if we don’t know what the specific cards are.  I asked her to consider the other brilliant cards in her hand… her intelligence, her sense of humour, her determination, the love and support she has from all of her family and friends, etc.  And I asked her to accept the idea that she has complete control over which card she chooses to focus on.  I told her that she would experience so much more happiness if she focused her attention on one of her brilliant cards. 

Her math sheets were finished with no further argument or hesitation. 

It’s very easy to focus on the negative stuff.  We do it as individuals, as teams, as organizations.    It’s one thing to understand our “negatives”, but to give them power over our strengths is a disservice to all involved.

“You can’t capitalize on strengths that you aren’t acknowledging.”  (Ann Hovey, 2015)