This Moment

| April 28, 2016

A little over a week ago, I participated in a care-giver luncheon, hosted by BrainWAVE, a pediatric brain tumour program created by the Brain Tumour Foundation of Canada.  This type of event helps care-givers like myself to connect with other care-givers walking along a similar path.  It is a very special experience for us attendees because we all have examples of moments along our journeys that we felt misunderstood… at these sessions, every participant nods in agreement or shakes their head in empathy.

There were many difficult stories, and some tears, shared.  I could totally relate to one participant’s feeling that she just didn’t know what to do to support her child.  When I worry about everything that could or might happen to my girls, I also feel helpless.  It can be paralyzing.

When I was first having to make the decision for Cailyn to stop chemotherapy (2008), I was caught up in an endless loop of worry.  One morning, I had a deep realization that fundamentally changed my outlook.  It is a moment I can vividly recall because my energy level went from frenzied to calm.  This realization was that the only place I had any power to do ANYTHING (in this case, help my girls), or any opportunity to experience peace, was “in this moment”.  I had learned this same lesson, the importance of being present in the moment, when I facilitated organizational teams… the approach is undeniably more critical when the goal you want to contribute to is so precious.

This insight inspired the mantra “go for hope”.  I shared with the group that my mantra truly helps me stay in the moment.  I know first-hand how difficult it is to stay hopeful when there is real potential for a negative outcome.  What I’ve realized is that I will be devastated by a negative outcome, whether or not I have been hopeful along the way to that outcome.  As I’ve shared in “Title of First Book“, if I’m hopeful, I’m more likely to take positive or constructive steps along the journey, maybe even opening up the potential for the best outcome.

I believe staying in this moment can maximize outcomes in every aspect of our lives… at work, at home, at school.  I am not always successful staying “in the moment” but I am surprised how quickly I can get there when I say my mantra:  Go For Hope!!!

Weekend of Teams

| April 25, 2016

This was a weekend of teams for me.  I spent time with my extended family to celebrate 3 birthdays (mine included); I watched Lauryn’s 12U volleyball team play 7 matches at the Ontario 13U Provincials; and, I hung out with the volleyball parents.

I love teams!  I always have.  We encounter teams all the way through our lives, from family to sports to work to healthcare.  Some teams are “more fun” than others, but the bottom-line is that within each team experience there is an opportunity to grow, to learn, and to have fun.

This weekend was filled with several examples!

Extended Family:  I am blessed with an extended family that truly values time with each other.  Our 4 households get together frequently throughout the year to celebrate special moments.  We had a fantastic visit, sharing laughs and updates… I certainly took advantage of this time to share my pictures of Cailyn’s foot!  We enjoyed a Skype visit with my niece – she is finishing off her school year in Grenoble; and, I learned more about the head-space my nephews are in, as they actively participated in our conversation.  After dinner, four of us went out and threw football (I got my warm-up by running to my car so I could move it in front of the building – thankfully, I beat my brother to the spot 🙂 !!)  The afternoon / evening was exceptional.  

12U Volleyball Team:   For the Provincial 13U tournament, Lauryn’s team was seeded 24th out of 64 teams… pretty fantastic considering their younger age and fewer years of experience!  There were plenty of opportunities across the 3 days for the girls to grow in their resilience and knowledge of both the game AND what it means to be a team member!  The growth in their skills over this last year has been amazing.  They will likely have one last “fun” tournament before they’re officially finished for the season… which is great, because I don’t believe anyone is ready for it to be over! 

Volleyball Parents:  The great team dynamic seen between the girls is mirrored by the parents’ team dynamic.  I was sharing with Lauryn that her desire to play volleyball is having a wonderfully positive impact on me.  The time she spends at practice and matches is time that I get to spend with a great group of people.  At an impromptu gathering after the match yesterday, the parents were louder than the kids… leaving the fun environment took some effort but was made a little easier with the knowledge that we had our next get-together planned!!

Among all the craziness of this weekend, I treasure most the moment when Lauryn went over to thank Cailyn for coming to watch her play… it was the longest hug in the world! 

Yes… teams enrich our lives and I’m thankful!!  

Cast Surprise

| April 21, 2016

Cailyn’s Latest Cast

Cailyn had her post-surgical follow-up and cast change yesterday.  Having never gone down this path before, I really didn’t know what to expect… I was definitely nervous about seeing all of the incisions!!

When we first sat down in the examination room, I noticed x-rays posted on the screen.  In the x-ray, I noticed two long black lines.  I had no idea what they were!

My Mom came with us and all three of us collectively held our breaths as the last layers of wrapping came off…

I was ready to see a number of incisions but I most definitely wasn’t ready for the two wires poking out of her foot (regardless of whether or not I had noticed the black lines in the x-ray)!!  I wasn’t the only one surprised. Cailyn told me, after the new cast was put on, that looking at her foot made her feel like throwing up.  I never felt like throwing up, but every time I thought about them having to pull out the wires at her next cast change, I had to take a few deep breaths!!  My Mom just kept marvelling at how good the incisions looked… she was completely calm and cool.  I told her she has a command performance in 4 weeks time!!

Her surgeon was pleased with how things looked and we were all pleased with the straightness of her foot.  Before her surgery, Cailyn’s foot would curve in when it was relaxed.  Yesterday, it didn’t!  She was the first to comment on it and it made her smile!!  Woohoo!!!

The plan for Cailyn’s next appointment is to remove the cast, take x-rays, pull out the wires, and re-cast it.  The nurse suggested that Cailyn have some pain medication before this appointment.  As for me, I’m hopeful there will be a nice place to sit down!!

Stay tuned!!

Return to School!

| April 18, 2016

Today has been a good day.  Cailyn returned to school this morning and we couldn’t have asked for a better experience!  Right after we arrived, friends ran up to her and gave her a big hug and the set-up arranged for her while she’s recuperating is fantastic.

Cailyn will be spending the majority of her school time over the next weeks in the Resource Room.  For someone who is challenged in her mobility, it’s a great solution in a school that has many layers of stairs!  Before Cailyn’s surgery, I met with her Guidance Counsellor and shared my concern that she would miss out on some of the information exchanges that occur in a classroom as students ask questions.  When I was in school, I can remember hearing the teacher’s answer to another student’s question and personally gaining an improved understanding of the topic being discussed.  Her Counsellor’s suggestion was that Cailyn could view a class through something like Skype.  This suggestion was well communicated to the support team in the Resource Centre and setting up this facility was accomplished today.  Cailyn viewed her Math class via Google Hangouts.  It’s absolutely amazing what tools are available to students and schools today!! 

Within minutes of us arriving at the school, some additional support arrived in the form of an Occupational Therapist and a Vision Itinerant Teacher.  Our home visits from an Occupational Therapist and a Physio-Therapist set Cailyn up for success on the home-front, ensuring she had the right tools and approaches to safely maneuver life at my parents house.  And today, the professionals worked with us and the school to ensure she was set up for success on the school front. 

When my Mom and I left the school, we were confident that we were leaving Cailyn in great hands!  What a relief!  She was “done” before the school day was but I know she feels the same way and is much more comfortable about heading to school tomorrow.  

Onwards and upwards! 

Push for Normal…

| April 14, 2016

First things first, Cailyn is recuperating nicely. She is able to manage any discomfort she is feeling with ibuprofen. I love how maturely she approaches it… “Mom, it’s uncomfortable, but it’s not unbearable!” 

Being home from the hospital this week, one of the pressing questions has become when will she return to school.  Over the course of 11.5 years, a constant refrain from all of our care providers is the message that pushing Cailyn to do “the normal” thing is extremely important for her emotional well-being.  Obviously, I will do whatever I can to support her emotional well-being.  The challenge for me is walking what I refer to as a line (or tight-rope) between the actions of pushing her to do the “normal” thing and both acknowledging and accepting that a “less normal” approach might best honour the uniqueness of her journey.  For example, the “normal” home recovery time for the reconstructive surgery she has had is 1 week.  Armed with this knowledge, I was thinking that Cailyn might be back to school yesterday.  However, having a body that is fatigued by 4 years of weekly chemo and further impacted by the additional, extensive surgery to remove her port, threw “normal” out the window.

I think embracing this drive towards normal has helped Cailyn develop the ability to rise above her circumstances.  I’ve been amazed time and time again at her resilience and her capacity to push through discomfort or distress.  Regardless, it doesn’t make it any easier to push her to go to school on those days she’s not feeling the best.  I struggle weekly, and sometimes daily, with wondering how much pushing is too much.    

In this particular example, it is definitely easier to choose the exceptional path… her first day back to school will be next Monday and, as it will take a little while for her to get back into full days again,  we’ll figure out together how to “catch up” with her classes… I’m sure her teachers will do what they can to support her.

As I type this I realize that when I focus on the big picture, like my belief that Cailyn’s unique strengths will help her find her way, whether or not an approach is “normal” just doesn’t matter.  It’s when I’m thinking about all the minutiae that has to happen that I worry about what every other “normal” child is doing.   I think it will be much healthier for both of us if I remember that she’ll find her way and I’ll do what I can to support her. 

So, pushing for “normal” can have wonderful consequences but I’m going to try to do a better job of remaining focused on the big picture so that walking the tight-rope isn’t quite so painful.   This should also help me cope with my recent reflections that our “train to normal” left 11.5 years ago… the day that she was diagnosed with this life-altering, life-threatening brain tumour. 

Home!

| April 9, 2016

It has been quite the week.  Definitely more ups than downs, especially since we finished the week at home.  We arrived at my parents place last night.  We were both thrilled to be away from the hospital and to be treated to a lovely dinner and a full glass of wine… ok… Cailyn didn’t care about the wine!  

Cailyn is staying at my parents place so she doesn’t have to maneuver any stairs.  She is unable to do any weight-bearing on her left foot and her mobility is further challenged by her left-sided weakness (hemiplegia) and her port surgery.  She has two incisions on the right side of her upper chest that are both tender!  We had some fun last night just working out the day-to-day details of getting her around my parents place in a wheel-chair… to the table to eat, to the bathroom to wash up and brush teeth.  She was exhausted by the time we got her into bed.  And, shockingly, she was still asleep when I got back to my parents this morning, just before 9… she’s normally up and going by 7am, regardless of how busy her previous day was.  

She is back in bed now, after working out some home-care solutions with an Occupational Therapist.  I’m sure it will get easier for her to manage the fatigue and pain and I know we’re all pleased we have some strategies in place to help her get around!

Thank you to all of our visitors for bringing brightness to our hospital days. It was fantastic to see Cailyn laughing out loud… laughter is, after all, the best medicine.  We also had support and diversions from Child Life and Art Therapy professionals and Ollie the Clown.  Actually, after one of our visits, I got a “visit” from a nurse who informed me that we were going to have to keep it down!

I will admit that there were some tough moments across the week but these moments often bring, as I’ve realized time and time again, blessings.  This week, these blessings came in the form of wonderful support from family and friends:  great diversions for Cailyn, meals and/or treats, help packing everything up, all the emails sending positive energy and prayers, and love!

Much appreciation goes to her medical teams.  We’ll go back in 10 days for a follow-up with her orthopaedic surgeon and a new cast.  In the meantime, we’ll be working towards getting her back to school, at least for half-days.

Onwards and upwards!

Surgery Day

| April 5, 2016

This is my first update via my cell phone!

Cailyn’s surgery day is drawing to a close. It has been a long day, starting at 4:30 am and ending shortly.   All in all, it has been a good day but she’s had a lot of work done (8 separate incisions) and she’ll likely be very uncomfortable tomorrow.   The nerves that have been “blocked” today are starting to wake up but hopefully she’ll still get a decent sleep.

As anticipated, removing the port that has been in place for 11.5 years proved difficult.   The tubing was “embedded” and had calcified. Consequently, all the tubing is still in place and will be reviewed by annual echocardiograms.  The surgeon was very surprised that our oncology team had been able to draw blood through it.  

Please continue sending your healing thoughts! 

MRI Update

| April 4, 2016

I just got off the phone with the hospital.  Cailyn’s 50th MRI at London Children’s Hospital was last Thursday and the results are in…. her tumour is STABLE!!!  I am SO, SO, SO happy to get this good news the day before she’s going in for foot surgery.  Obviously, with the tumour being stable, we are going to piggy-back on her foot surgery to remove her 11.5 year-old port.  And… this surgery will mark the beginning of a much needed break from her weekly chemo.

While she is in the hospital, I will do my best to update this website with how she’s doing!  Please send your positive energy towards London Children’s Hospital and Cailyn’s medical teams.  We’re visualizing that the best results possible are achieved with the surgery and that she has an extremely long (read forever) break from any other medical interventions.

Go for Hope!! 

Waiting and hoping…

| April 1, 2016

Cailyn’s MRI was yesterday.  It was booked before her reconstructive foot surgery so we would know whether or not her “port” could be taken out during the same surgery and she could get a break from chemotherapy!

As you can imagine, we are anxiously awaiting the results!  And, this is the first time in Cailyn’s 11.5 year journey that she has specifically asked me to update her with the results as soon as I get them.

Looking forward to good news!

Cailyn’s Presentation

| March 29, 2016

Today I went to Cailyn’s school. All the students were gathered to learn about the upcoming Relay for Life being hosted by the school. To garner support for the event, Cailyn was asked to share what it’s like to live with a life-threatening illness. I got to see her before she spoke and, although she was noticeably nervous, she never wavered from her intention to speak. Wow! I sincerely can’t imagine ever doing something that brave when I was 14! My parting words were “remember to breathe, speak slowly, and don’t worry if you have to pause”!

She did a great job. I was glad she became comfortable with the idea of me attending. Her first answer last week was that I wasn’t allowed to come because there wouldn’t be any other parents there. While we were visiting dear friends over Easter week-end, though, they decided that they were going to attend… this definitely opened the door to me witnessing the event too! 🙂

A few teachers and students stopped to tell me how well she had done as they left the auditorium and the organizing committee all expressed their gratitude to Cailyn.

Her observation at the end of her two presentations (to over 1,000 students) was that she had done better in some areas with the first group of students but did other things better when she presented to the second group. I shared that I always learn something from doing a presentation and aim to take what I learn into the next one!

I gave her a high-five and asked her how she felt now that the experience was behind her… the beautiful smile on her face was answer enough. I told her how proud I was of her and expressed that I was hopeful she was proud of herself. I stated that she had accomplished something very important just by stepping up!

Congratulations Cailyn!