Long Overdue

| February 20, 2020

I haven’t updated for a long time because I have struggled with what to write.  I can’t seem to find words powerful enough to express sufficiently how deeply this journey has pushed me.

When Cailyn was first diagnosed, I was told that I needed to accept that she had a chronic, life-threatening illness.  Frankly, I didn’t accept it at the time, but over the last 15 years and 4 progressions in her tumour, I’ve come to begrudgingly accept it.  Correlated with this begrudging acceptance is my sense of decreasing resilience.  It wasn’t until I was asked to share my strategies for developing resiliency in children, that I unlocked this correlation.  I am writing again today because I’ve decided I need to reboot… I need to actively draw upon these strategies so I can regain my own resiliency.

In the meantime…

Cailyn had a second reconstructive surgery on her left foot on November 22nd.  The surgery involved breaking her foot in a couple places and inserting a plate and a very long screw.  She was non-weight-bearing for 7 weeks and is now sporting an air-cast.  At her appointment last week, we learned that the goal is to be out of the air-cast by early April.  It’s a very long process but she is very happy with how straight her foot looks… it’s the straightest I can recall seeing it in a decade!

Cailyn also had a follow-up MRI yesterday and we are anxiously awaiting the results.  Her tumour grew last year and I’m so hopeful it has stabilized now.  We didn’t start any treatment because her body has already been subjected to so much and there is a chance that her tumour will become quiet as she matures into adulthood.  I feel like I’m holding my breath…

On a very positive note, Cailyn received early acceptance to two of her three choices for University and is hopeful to hear from her number one choice.  Since last September, she has been getting “real-life” experience through two jobs.  It has been wonderful to see growth in her confidence!

Lauryn is continuing to love playing volleyball, which is a great thing because our schedule is packed with volleyball-related commitments and opportunities, both social and otherwise.  Since I last wrote, she has formally decided that she wants to play and grow her skills beyond high-school.  I’m trying to keep up with her!

I am blessed with these two beautiful girls.  Their resilience reminds me of what it takes… stay tuned for more on resilience!!

Summer is here!

| November 5, 2018

This is the seventh update I have started and I am very hopeful that I don’t get a writer’s block with this one!  I have mentioned it in other entries, and it is just as true now, I am struggling these last many months to find the words that do justice to my feelings regarding the challenges that our particular road presents.  My goal for this missive, however, will be to just update.  I’ll save the deeper expressions for another time 🙂 !!

On an academic note, the school year is finished for both of my girls.  Although Cailyn’s second semester marks aren’t available yet, I’m confident that they both finished their years with results of which they can be proud.  Lauryn’s drive towards good marks began this year, her last year of Grade School.  Consequently, she was inspired to put a little more time into her studies.  Fortunately for her, her efforts were rewarded.  Her graduation ceremony was very special.  She received a special citizenship award and was given an exceptional tribute by an important teacher in her life.

It’s pretty amazing for a respected teacher to publicly state that Lauryn is leaving her school a better place… what I have reflected on since the ceremony, though, was the equally amazing support Lauryn received from her sister for all of her accomplishments.  Many siblings on crazy health-care journeys can experience resentment from time to time… resentments arise when the healthy sibling perceives that his/her sibling is receiving more attention, and they arise when the diagnosed sibling perceives that life for their sibling is so much easier.  So… seeing how genuinely Cailyn supported her sister’s success was a beautiful reflection of their strong and respectful relationship.

On an activity note, it has also been an enjoyable, yet sometimes frenetic, year.  Cailyn was a member of the senior Orchestra this year.  They are an exceptionally talented group of musicians.  Listening to them play makes me feel strong emotions.  I am thrilled that she has the opportunity to be a member of such a successful and wonderful “team”; together they create magic.  And, it never fails, that their music reminds me of a conversation I had with her neuro-surgeon in New York… on November 19, 2004, this surgeon took me to see the images from the MRI scan documenting the outcome of her surgery the previous day.  He told me that he was happy with the amount of tumour that he had removed but was concerned about a particular area on the scan.  This specific scan prompted him to say that he was pretty sure that Cailyn would walk but didn’t think she’d ever be able to use her left arm.  How miraculous it is, then, that she can use her left arm to play the piano, her violin, and her guitar!  Cailyn also played wheel-chair basketball this year.  Although it was sometimes difficult to get her to go, her season finished on a high note, leading to her making a commitment with the club to play again this next year.  This summer, Cailyn is most excited about participating in an intern program to become a counsellor at Camp Trillium.  I’m so thankful we have Camp Trillium in our lives; taking her involvement to this next level will mean that she will have it in her life for a longer period of time!

Lauryn had an amazing year with her club volleyball team.  Together, they came first in the province and then topped that result with a first place finish at the Canadian Nationals in Edmonton.  Lauryn’s experiences with her team are a great blessing to both of us.  As a result of these experiences, she has grown as much in her soft skills as she has in her physical skills, and I am thrilled that we spend so much of our time surrounded by wonderful people… it takes a community, as “they” say, and we are so fortunate to be part of this awesome community.  I think the highlight of her summer will be her participation in the Ontario Summer Games.  Along with a number of her teammates, she will be representing our region in this provincial competition.  Should be a lot of fun!

On a health note, Cailyn has had two MRIs since I last updated.  The last line documented on her most recent MRI is:  “Allowing for slight differences in measurements between examinations, both the solid mass and surrounding fluid component has remained relatively stable…”.  It is unequivocally true that an MRI result carries a weight beyond measuring.  Our emotional and physical health and well-being is directly impacted by this result.  Three days after her last MRI, Cailyn’s nurse case manager called.  Her first question was:  “How come you haven’t called?”  She was surprised because I normally reach out to get the results before three days have passed.  I shared with her that I am feeling burnt out… that I had been waffling between calling and waiting, with the waiting obviously winning out this one time.  I actually was afraid… concerned that I could receive the “we need to talk about treatments” call, and also feeling that the report of stable just doesn’t alleviate a pervasive underlying concern.  Specific measurements aren’t always provided on a report but this report had some… my predominant thought, when I compared these measurements with previous reports from the last two years, was hope that the changes were only attributable to measurement differences and not subtle growth in her tumour.  Cailyn has recently started a drug that I am hopeful will help her deal with her significant level of fatigue.  Apparently many kids who have received treatment for brain tumours experience a debilitating level of fatigue… having a significant impact on their quality of life.  I am so hopeful that this new drug helps her engage more fully with her life!

Three addendums:  1.  I know exactly how lucky we are that Cailyn’s tumour isn’t growing out of control, and that there are some options for her if she does need more intervention.  2.  there are many less obvious physical and emotional challenges resulting from these journeys that can’t be ignored; and, 3. I know that “staying in the moment” is critical to our health and well-being but I have to admit that it has become harder, and not easier, to get to this state of mind.

Here’s to rebuilding my resilience over the course of the summer!!

Happy New Year!

| January 25, 2018

Happy New Year!  I hope 2018 has gotten off to a great start for you.  

New Year’s Eve found us celebrating with friends and family in Toronto.  We had special time with my brother’s family in Toronto, and we loved reconnecting with our dear friends at their New Year’s Eve party.  We all commented on what a great way it was to start 2018.

I haven’t updated in a long time.  I use this particular blog to share what I’m feeling about our journey and its impact on our lives. 

My lack of update isn’t because there isn’t anything going on… there’s always something “in the works”.  What it does mean is that I don’t have the words to explain what I’m feeling about either the journey or the on-going challenges associated with it.

Although I’ve said it before, it bears repeating now.  There is absolutely no way a care-giver can be prepared to manage all of the fall-out from a chronic life-threatening health concern… let alone one that has been going on for 13 years.  Sometimes all you can focus on is the last punch, and, if it has knocked you down, figure out how to get back up and stay in the ring.  Suffice to say, I am swinging again. 

As far as Cailyn’s health and well-being is concerned, she’s currently finishing her first semester of Grade 11, with all of the projects, summatives, essays and exams involved.  She feels “done” and can’t wait for the few days of break she gets when her exams are finished.  On the medical front, she has blood-work and follow-up on endocrinology and orthopaedic “stuff”, electrical stimulation and therapy to help her strengthen her ankle, brace “fixes”, quarterly MRIs with subsequent follow-ups, to name a few.  Just before Christmas, Cailyn had a bacterial infection in her toe that required heavy-duty antibiotic pills and topical cream.  She was too uncomfortable to wear her brace or boots for a couple days, but was well on her way to recovery on Christmas day!  Her resilience and spirit continue to amaze me.  Her next MRI is on Valentine’s Day… here’s to great results!

Life remains busy on the volleyball front for Lauryn.  Since I last updated, her team has played three tournaments.  She is blessed to be on this one-of-a-kind team, with great coaches and team-mates.  Their physical skills are certainly beyond their age, but so is their attitude.  They are a positive and respectful team, and have demonstrated an enviable mental toughness on many occasions.  They are ranked 1st in the province in 14U and are in the top 10 of the province’s 15U teams.  On the school front, Lauryn earned an opportunity to share her speech with the whole school yesterday.  Her topic was:  How cancer affects the whole family.  She did a fantastic job honouring the situation that parents (care-givers) and siblings find themselves in.  She focused a heck of a lot more on me than on herself, even to the point of sharing how my principles have helped me cope on this journey, and have helped shape my girls’ lives.  She admitted to feeling jealous of all of the attention that Cailyn has received at times.  She noted that she now understands that it wasn’t the kind of attention that anybody wants.  I am so proud of her… her maturity and empathy are exceptional.

Thank you for staying tuned!

Empathy

| November 30, 2017

I appreciate in spades what being empathized with feels like… and, the outcome of those moments when someone in our life demonstrated that they either understood what I was feeling or was really trying to understand, was a calming sense that I wasn’t alone with my fear and concern.

As someone who has received the supportive blessing of empathy, I appreciate how important it is for me to offer empathy to the people in my life.  I fell short of doing this last week-end.

On the week-end, my desire to help people for whom I care, inspired me to share my belief that everything was going to work out in their situation, and to share an approach to making decisions that has helped along our particular journey.

What I didn’t think about was the huge frustration and sadness I have felt when I sensed that the person to whom I was expressing my own concerns was not able to step into my shoes.  To be fair, it’s almost impossible to truly understand unless there has been a similar life experience but you don’t have to have the same life experience to “try”.  Rather than just listening and saying they were really sorry for the situation I was in, they focused on offering suggestions on how I should think or what I should do.

When I was aware that my “support” wasn’t being as well-received as it was intended, I was a little surprised… surely my loved ones knew from what perspective I was speaking and that my support was sincere.  That wasn’t the point, though… the point was they needed to know that some of the people in their lives understood what they were struggling with.  They weren’t asking for suggestions, they were simply seeking supportive understanding.

I will do better next time!!

Welcome Verdict

| November 16, 2017

Whew!!!

I am very thankful, after reading Cailyn’s MRI report, to be able to report that her tumour appears stable.  I have to admit that my predominant feeling is closer to relief than unbridled joy.  I have always said that I would be bounding joyfully if someone told me that this significant threat to my daughter’s health and well-being was gone, or at least diminishing in size.

That being said, we are on the positive side of the ledger.  This means that we have a three-month reprieve… some more time and energy to focus on the things of “everyday life”.  The everyday things don’t always get the attention they need because they feel absolutely meaningless when positioned against concerns related to risks to life or quality of life.

Thank you for the positive energy and prayers you have shared with us.  We appreciate them more than you can possibly know!

Scan Anxiety

| November 14, 2017

Today is Cailyn’s MRI.

Throughout her journey and over the course of almost 60 MRIs, I have never had pre-MRI dreams in which I learn the results.  Last night I did.

I didn’t like the results and the emotions I felt wakened me.

It took me some time to fall back to sleep as my thoughts yo-yo’d between “am I being prepared for the kind of results no one can ever prepare for?”, and, “Cailyn’s tumour has NOT grown!”.  Even my “logical” thoughts were conflicting.  On one hand, I was acknowledging that this was a first for me, and I feel that ‘coincidences’ in life are rare.  On the other hand, I have been busier focussing on what I CAN do and Cailyn has been in good form (minus the heavy cold she has right now).  Consequently, when concerns have popped up, I have more successfully dispelled them.

Needless to say, I am welcoming all hopeful energy, thoughts, and prayers.

Here’s to my next positive update that everything is stable!!

Childhood Cancer Awareness 3

| November 3, 2017

This is my third post in honour of Childhood Cancer Awareness Month.  The month is over but the need for a cure remains.  

I watched a burial service on Facebook last month for a young person that we know through our journey.  Anthony’s tumour, like Cailyn’s, was also diagnosed as a slower-growing tumour (glioma) in his brain-stem.  His mother, Ann, and I connected at a neuro-oncology conference and realized that our kids were on similar journeys.  Unfortunately, earlier this year, Anthony’s tumour ‘morph’ed into the most aggressive brain tumour I think there is, a DIPG (Diffuse Intrinsic Pontine Glioma).  

I can’t even begin to imagine what Ann is feeling, nor do I ever want to be in a position where my understanding becomes crystal clear.  This is one of the worst things a family can face and, at a time when they need the most support, they can feel the most alienated.  The loss is huge, the hurt is unavoidable, and the concerns of the “normal” world are so inconsequential. Just think about how difficult the simple question of “How are you?” would be to answer.  

When someone asks me how I am doing, I often struggle to answer.  Not because everything is going wrong, but rather because not everything is quite right!  There are a lot of great things… 

1. Lauryn has started to read voraciously.  She has read twelve books since the beginning of July.  A truly blessed outcome is that her relationship with Cailyn has blossomed as they discuss the books that they have both enjoyed.  

2. Academically, the girls’ school years are off to decent starts.  Activity-wise, Cailyn is helping manage the school basketball team, she’s in the senior orchestra (playing violin), and she’s playing wheel-chair basketball.  Lauryn’s 14U club volleyball team started their season with a bang… winning a 15U Exhibition tournament.  She is playing basketball at school and playing cello in the school orchestra.  

3. I have been focusing more attention in the last few months on rebuilding my career than I have done in the last decade.  As a result, I have had the occasions to remember my power to create / contribute to exceptional experiences and processes.  These occasions are diametrically opposed to the majority of experiences in the medical arena, where we are often reminded that we are powerless to change the situation that takes us there.

4. Cailyn’s tumour, after a year of growing, has been stable for almost a year.  It would be very wrong to not have this on the positive side of the ledger.  We have had no weekly chemo, with its difficult side-effects, since before Cailyn’s foot surgery in April of 2016.  

So, why is it so hard to just answer “I am doing really well, thank you.” Because, unfortunately, I know there is no guarantee that Cailyn is “out of the woods”, with no risk of tumour progression and no serious long-term impacts from all of her interventions.  We have had four different appointments with her specialists in the last three weeks… every appointment is an “in-the-face” reminder of the challenges associated with Cailyn’s health journey. 

Regardless of how difficult it might be to answer “How are you?”, thank you for continuing to ask parents like me.  It gives us an opportunity to “unload”, to feel better understood by those we care about, and to decrease the sense that we are alone in both our situation and feelings.   

Thanksgiving 2017

| October 9, 2017

Hard to believe we are more than a month into the school year, and school-work and activities are moving full-steam ahead.

For what am I most thankful???

That’s an easy answer… time with people I love… and that’s what Thanksgiving is all about for me.  It doesn’t matter where we are, what we eat, or what the weather is like; it only matters that we are spending time with people we care about.

This week-end of “Thanksgiving” inevitably brings to my mind thoughts for families who have lost children to Childhood Cancer.  I can admit that the impact of Cailyn’s health journey and challenges has oftentimes made me feel numb… trudging through day-to-day stuff and certainly not reveling in special moments or events.  I can’t begin to imagine how difficult it is for families who have suffered this great a loss.  

Keep your loved ones close… leave no words of love and support unsaid.  

 

Childhood Cancer Awareness 2

| September 27, 2017

In Honour of both my daughter and Childhood Cancer Awareness Month…

Today is my daughter’s birthday… 16 years ago, she was delivered a little over three weeks early by C-section.  I had placenta previa and it was unsafe for both of us for me to go into labour.  As it turned out, the six weeks I spent in the hospital waiting to have her, and the 8 days she stayed in the neo-natal intensive care unit, was just the first of our many hospital stays.

A month and a half before Cailyn’s third birthday, she was diagnosed with a brain-stem tumour.  Life as we knew it was irrevocably changed.  Gone were thoughts of gymnastics and starting pre-school that September.  Instead, we were focused on needles, surgeries, chemotherapy, hospitalizations due to allergic reactions to the drugs, and the most gut-wrenching conversations conceivable… conversations in which phrases like “she has 10 to 12 months to live” and “appreciate that you have had the time you’ve had with her” were actually uttered.

It was truly like being caught up in a tornado.  We were spinning around in circles, completely unable to get our bearings and grab on to something stable.  Nothing WAS stable anymore and normal things, like buying groceries, was a truly surreal experience… I remember stopping in the middle of an aisle and wondering what the heck I was doing in the middle of a store when all hell was breaking loose.  This was just the first 3 months after her diagnosis.

We have been pushed to the edge of our capacity many times over the last 13 years.  Sincerely, if someone had told me how challenging the last 13 years would be, mentally / emotionally / physically, I’m not sure I would have been able to cope.  Cailyn has been my inspiration… her beautiful spirit has been my guide… I try very hard to rise to her example and bring my best to the table.  My life is just as blessed by her as it is challenged by her journey.

I have been told that it is a miracle that Cailyn is alive and as able as she is.  I’ll take it!  Tonight, as I’m having a piece of her birthday cake, I’ll be crying… crying tears of joy for us and tears of sadness for all the families who have lost their beautiful children to childhood cancer… those we know and those that we don’t.

To honour Cailyn and thousands of kids like her, please consider supporting organizations that focus their resources on pediatric cancer research and support.  There is no cure for Cailyn yet but I am still so very hopeful that there will be!

Three things you should know about childhood cancer:

1.  Childhood cancer is the No. 1 disease killer of children – one in five children diagnosed with cancer don’t survive.

2.  A child is diagnosed with cancer every 2 minutes somewhere in the world.

3.  More than 95% of childhood cancer survivors will have a chronic health problem, and 80% will have severe or life-threatening conditions.  So… these journeys are both life-threatening and “quality of life”-threatening.

Here’s to finding a cure!

Childhood Cancer Awareness 1

| September 16, 2017

September is the month dedicated to Childhood Cancer Awareness.  

If you want the quantifiable statistics associated with childhood cancer, you can find stats on many different websites pertaining to incidence and mortality.  I shared some of them in my post last year Childhood Cancer Awareness.  In Canada, it is the second leading cause of death in children, after accidents. 

The quantifiable statistics around Childhood Cancer are truly frightening.  And, for each black-and-white statistic available, there are many immeasurable impacts that fundamentally change the lives of families with a diagnosed child.  In honour of Childhood Cancer Awareness and thousands of other families on similar journeys, I will attempt to share some of the immeasurables, as they pertain to our health and well-being, our relationships with our families and friends, and our finances.

In this first post on the subject, I am going to focus on family health and well-being.  

Children who are diagnosed with cancer and brain tumours don’t just suffer as a result of their illness and the treatments used to cure or control it.  They also suffer from the long-term side-effects of their illness and the consequences of the treatments.  Cailyn’s tumour and surgeries have caused left-sided weakness (hemiplegia) and double vision, both contributing to a significant fatigue.  As a result of her hemiplegia, she has had reconstructive surgery and continues to wear a splint on her left foot so that the mechanics of how she walks don’t erode the quality of her knee and hip joints.  Because she has double vision, she has had two surgeries and will need glasses, that occlude one of her eyes, so she can drive.  From neuro-psych testing, we know that she has an unusually high number of academic strengths  –  but those are not always reflected in her marks, and I believe that it is because of the bone-deep fatigue that she feels frequently.  She is but one of thousands of children who deal with difficult, lasting effects from procedures and treatments.

Understandably, the health and well-being of the care-givers doesn’t appear on the list of daily considerations… it can’t even make it to the top 20.  Unfortunately, the wear and tear caused by stress is real and can be quite serious.  Some of my medical team believe my brain tumour developed because my immune system was exhausted.  Five years into my journey with Cailyn, I had 4 sinus infections over 5 months.  A couple months later, I experienced double vision which signalled the presence and growth of a brain tumour. However, having been diagnosed and treated, I can now, unequivocally, state that my personal health doesn’t make my daily or weekly radar… not because it isn’t important, but because it isn’t AS overwhelming and consuming as Cailyn’s is.

Apart from the potential big consequences of this journey, there is the exhaustion that develops as a result of being in an extended “fight or flight” mode.  This exhaustion impacts our ability to care about the day-to-day minutiae – not always able to enjoy the fun ‘stuff’ nor maintain the critical hopefulness that has fuelled all of our best decisions and actions.  Even when children aren’t in active treatment, there are follow-up appointments and scans, along with the potential that our children’s diseases can return with a vengeance, as many of us have experienced.  There hasn’t been one week in the last couple of months that I haven’t had at least one appointment for Cailyn.  These appointments are stressful because some aspect of Cailyn’s health is being examined and considered, compromising the family’s sense of well-being.

This is just a glimpse… stay tuned for more…