Results of the Week

| August 17, 2017

We went to London twice this week.

On Monday, Cailyn had a follow-up appointment with her orthopaedic surgeon. During the appointment, Cailyn’s doctor agreed that her brace isn’t holding her foot in the right position. Specifically, her heel isn’t situated properly under her ankle. Thankfully, the fact that her foot remains supple means that a new brace might be sufficient to achieve the correct positioning… if Cailyn is diligent with her therapy! Consequently, Cailyn will be fit for a new brace before school starts and she is taking her exercises more seriously!

On Wednesday, Cailyn had her MRI.  As usually happens when the time to the next MRI is dwindling, funny things were happening that inspired uncomfortable thoughts.  The most significant of these “things” was four little choking spells while we were away.  After the last spell, and asking her if she was okay, I observed out loud that that was the fourth time she had choked in a few days.  She simply said “yep”.  It’s an interesting phenomenon that many of us care-givers experience… the occurrence of “episodes”, as you get closer to a scan or test, that remind you why you want that scan or test!

Well, I am happy to share with you that I have just learned that Cailyn’s tumour has been reported to be stable.  I am thrilled that her body has more time to heal and build her energy stores.  There have been a few times this summer that I was acutely aware of the impact her fatigue had on her ability to really enjoy a moment.

What a great way to go into the last weeks of summer!!

Time

| August 8, 2017

Time, precious time.  We have had exceptional experiences so far this summer.  Family vacation time in the Okanagan Valley, a great visit to special friends and dear family in San Francisco, beach volleyball barbecues with our wonderful volleyball families, residence camp for my girls at Camp Trillium, and a “girl-cousin reunion” that was 15 and a half years in the making.

Unbelievably, we still have more great experiences to anticipate, starting with Family Camp at Camp Trillium.

Sitting in the airport a couple weekends ago, I was hit by an insight.  We got through check-out and customs quickly and I had time to relax.  As I was sitting reading, my excitement was bubbling right out of me, inspiring me to reach out to the girls two times to tell them how blessed I felt to be on this adventure with them.  As I was about to repeat myself a third time, I thought about the power of anticipation and I realized that it wasn’t the destination that mattered, it was the fact that I was sharing something special with my girls… time.

We all know that once the grain of sand passes through the neck of the hour glass, it’s beyond retrieving.  And, I fully embrace the idea that the size of my house, the type of car I drive, the material items I own, will all be meaningless as my last grain of sand drops… what will matter is the relationships and experiences I have shared with the people in my life.

Although I have held this belief for longer than Cailyn has been on her exceptional health care journey, her journey consistently reinforces it.  I have had moments when I was sincerely concerned that Cailyn’s sand was running out, and there are way too many families who would give anything for more time with loved ones who have passed.  Cherish your special moments with your loved ones, whether you’re flying off to some exotic locale or playing a board game and listening to music together.

Time is of the essence……

Summer’s Here!

| July 17, 2017

Summer has begun and everyone is thrilled.  No school deadlines to manage, and some fun experiences to anticipate, like celebratory get-aways and summer camps.  

We arrived home last night from a very special celebration.  My parents’ 60th wedding anniversary happened around the same time my brother and sister-in-law’s new house in the Okanagan Valley was completed.  My parents treated us all to a trip out west so the two celebrations could collide into one truly wonderful moment in time.  The generosity of both my parents and my brother and sister-in-law resulted in a vacation that produced great memories for my girls and me.  What a fantastic way to start the summer!

The next collection of memories for the girls will be at Camp Trillium.  This year, Cailyn will be a “Quester”, which means that she’ll be participating in workshops and learning about what it takes to lead camp activities.  I’m thrilled that she gets this opportunity to appreciate what is required to create an amazing camp experience for someone else!  Lauryn is also looking forward to her camp experience and I’m thankful she has the opportunity to connect with other siblings who understand what it feels like to be the “other” sibling.  

While the girls are at camp, I will have my follow-up MRI.  For the first time since my radiation treatment, I won’t get the results on the same day.  Instead, I’ll head back to Toronto Western to learn the results a few days later.  Here’s hoping everything remains stable!

I hope you all are enjoying a great start to your summer!

Why I Write

| June 26, 2017

I am working on my first video… stepping into the age of vlogging… and through this exercise, I am reminded of why I write.

While I was working on it, I remembered the hours following the moment I heard that my daughter had less than a year to live.  Waking up in the middle of the night to feed my newborn, I had horrible thoughts running rampant in my head.  (Why is it that our thoughts can be so dark in the middle of the night?)  Anyway, I picked up my copy of Dr. Siegel’s book, “Love, Medicine and Miracles.  In it, I found stories of exceptional patients.  These people had completely exceeded the expectations of their specialists.

I clung to the stories in that book like I would have clung to a life-preserver.  Hope began to grow, casting out my feelings of desperation.  I began to think of things I could do to help my daughter, as opposed to my drowning in the daunting reality of our situation.

I write to “pay it forward”.  I want our story to provide the kind of inspiration that I received… enough inspiration to turn thoughts from despair to optimism.

Here’s to hope!

“Potential” Insight

| June 13, 2017

Happy Tuesday!   

On Saturday, Lauryn and I were at Ashbridges Bay for a beach volleyball tournament.  It was a great day to be an observer… the skies were blue and there was a light breeze blowing that you could feel when you were standing in the shade.  I think Lauryn and Delaney, her beach partner, would have preferred a little less sun and heat but they’ve also played in less ideal conditions… horizontal winds, rain, and cold!

They had a great morning and won their pool matches with a consistent level of effort and performance.  I found the afternoon to be significantly more stressful to watch… and, upon reflection, it had everything to do with the girls not consistently playing to their potential… for example, winning one set by 11 points and then turning around to give their opponents a 10-point lead in the second set.

My perspective on the importance of winning a game or match is sincerely influenced by our journey… it is NOT the end of the world to lose… in fact, you can walk away from a lost match with real satisfaction if you have played as well as you can.  So, why did I find it so stressful to watch the girls struggle?

Well, I think it’s because a huge proportion of our actions, as parents, is fuelled by our desire to help our children achieve their full potential, whatever it may be!  This parental focus makes it difficult sometimes to separate the moments from the larger goals!

And thinking about the stress I felt over relatively meaningless volleyball matches, got me thinking about how consumed I am by thoughts and concerns around Cailyn’s ability to achieve her full potential.  In fact, it is so consuming, that I don’t even comprehend when someone is actually asking about MY health.  Twice within the last week, I have had two different people ask me how I’m doing.  I immediately started speaking about Cailyn because the challenges she continues to face are always uppermost in my mind, and preserving her potential is one of my greatest goals.  It wasn’t until they asked me when my next MRI/check-up is, that I understood they were actually asking about me.

I know I’m not the only parent focused on my children’s potentials, whether it be related to their health, or academic and social success, or athletic performance.  That being said, I am hopeful that the next time I watch volleyball, this insight will remind me to keep everything in perspective and just enjoy the moment.  As it turned out, Lauryn and Delaney came home with the gold medal.  They persevered and competed with grace, focusing on the larger goal. 🙂 !! 

Results!

| May 29, 2017

Happy Monday!

Cailyn’s nurse called and shared that Cailyn’s tumour is stable!!  Wooohooo!  To say I am very relieved is such an understatement.  I am so thankful we don’t imminently have to make a tough decision, potentially on opposing sides of the table.  I’m thrilled that she doesn’t have to first face the reality that the “normalcy” she has been experiencing is about to shatter, and then to experience the decrease in quality of life that accompanies treatment.  And, I’m over the moon that her body has more time to regain its vitality! 

We will have the formal follow-up with the oncologist tomorrow.  She has asked us to get Cailyn’s vision assessed by her ophthalmologist, too.  These two episodes of Cailyn’s vision turning “a lovely shade of blue” is unexpected and needs to be investigated.  Unfortunately, these exceptional journeys are always accompanied by undesired after-effects.  Hopefully, a negative impact on her vision isn’t one of the side-effects that Cailyn will have to accommodate. 

I will keep you posted.  In the meantime, make it a great week! 

Next MRI

| May 23, 2017

Tomorrow, Cailyn has her next MRI.  We are both very hopeful we’ll learn that there is no continued growth in her tumour.  If there is any further growth, her oncologist believes that the only course of action is treatment.  I appreciate that we’re not out of the woods if the MRI is stable, but it’s easier to “live in the moment” when some of your fears for the future haven’t been realized!

I have been reinforcing my efforts to focus on the positive and to think hopefully.  It’s absolutely impossible for me to forget that Cailyn’s health and well-being are at risk.  That being said, I will be devastated if we get the news that her tumour has grown again, whether or not I have been hopeful up to the point that we get the results.  

Unfortunately, getting to this mindset can be very challenging and losing a grip on it can happen instantaneously.  For example, Cailyn told me twice over the last ten days that everything in her vision had turned blue.  The effect didn’t last long but I couldn’t help wondering if this was a sign that her tumour had grown and was now impacting her optic nerve in a different way.  

During an appointment a couple weeks ago, while discussing Cailyn’s medical status, I realized that she and I still haven’t clearly landed on the same page regarding treatment. Here’s hoping that we won’t have to scramble emotionally to get to the same page quickly!!

We welcome all positive thoughts, prayers and feelings!!

Here’s to good news!

Persevere

| May 10, 2017

Perseverance is a powerful concept, and one that requires constant consideration in this house.  The first time I actively considered the importance of perseverance was decades ago when I read a business article stating that success was about 90% perseverance and 10% talent. This statement inspired me to consider its truth and it didn’t take long for me to gather examples from earlier in my life to validate it!

Perseverance is needed along most, if not all, dimensions of life. 

Physical, mental AND emotional perseverance has been critical for both Cailyn and I over the last dozen years.  Cailyn’s diagnosing doctor told me a few years ago that when he first worked with us he thought I was crazy.  I was a little taken aback by the statement and tried to joke about it, but he simply repeated himself.  He elaborated by saying he thought I was delusional… not paying attention to the gravity of Cailyn’s diagnosis and the severity of her deficits.  Thankfully, he then went on to say that I kept pushing everyone to work with Cailyn as if the best results were going to be possible.  He added that it was because of my perseverance that her medical team learned that when we push for the best results possible, we can achieve things they never thought were possible.  I deeply appreciated his pat on the back… it didn’t make my head swell but it sure inspired me to keep persevering.  

The last two weekends have presented examples of perseverance under different circumstances.  On the first weekend, Lauryn’s 13U volleyball team competed at their 13U Provincials.  This team has participated in three successive 13U Provincial Championships, as an 11U, a 12U, and a 13U team. This year they entered the competition ranked first in the province, adding a little extra pressure to their moment.  On their third, and last, day of competition, they played the 3rd ranked team to get to the semis, the 4th ranked team to get to the Gold medal match, where they played the 2nd ranked team and came away with the Gold.  It was an amazing finish to three years of hard work!  To top off their season, the team finished in 18th place at the 14U Eastern Nationals last week-end.  The team showed great tenacity against the older, and bigger, teams.  It was great to see the determination and to realize that they carry this developing muscle with them to the other mountains they will face in their lives.

Perseverance requires conscious effort and we don’t always know when we’re going to be challenged to stay tough.  Oftentimes, the more difficult it is to persevere, the more important it is that we do. 

Persevere!!

Gratitude

| April 22, 2017

Today was a very special day… it was Earth Day, my birthday, and the wonderful celebration of both my parents’ 60th wedding anniversary and my Mom’s 80th birthday.

The weather cooperated, bringing beautiful sunshine… it was as sunny in the party room as it was outside.  These kinds of gatherings afford us the opportunity to reconnect with many of the special people who have come in to my parents’ lives and our lives as a family.  They also inspire us to consider the blessings we receive as a result of these connections.

I’m thankful for the time I got to spend with the celebrants today and I wish there had been more time to spend with both those who attended and those who were unable to attend.  I am also thankful for all of the friends who reached out to me to specifically send birthday greetings.  I so appreciate all the well wishes and support.  They are the kind of fuel I need to carry me through the challenges.

We ended the day with a family photo shoot.  I’m looking forward to seeing the love and fun I expect to find captured within the photos.

Stay tuned.

Coasting

| April 11, 2017

Thankful for everyone’s positive thoughts and energy, the results from Cailyn’s tests were negative.  And, most importantly, the discomfort in her side has gone.  I am truly relieved.  I also appreciate that my happy dance is less energetic… not because I’m not happy, but because the roller-coaster ride can be truly exhausting.

My relief is shared by my daughter.  She isn’t often ebullient, but she sure started her day yesterday in an unusually jovial manner… I don’t think she was able to put a name to it, but she observed the same!  I think it was because her pain was gone and she was relieved, too.  It was her real concern over her discomfort last week that fed my concern… I can’t think of a moment that she has over-reacted over the last dozen years.

As we still haven’t determined where the tubing from Cailyn’s port is located, this last experience of pain on her left-side has inspired me to try to get closure on her latest abnormal ultrasound of the tubing.

In the meantime, though, we’re going to celebrate that she feels “happy” and is without the concerning pain.

Onward and upward!