Cast off

| June 8, 2016

Today we were back in London to follow-up with Cailyn’s orthopaedic surgeon. The first part of the process was getting her cast cut so she could get her foot x-rayed without the cast on.  Based on Cailyn’s reactions 3 weeks ago and today, it is a process that is very ticklish 🙂 !!  It’s quite amazing that a blade can be created that cuts through the solid cast using friction and doesn’t cut through skin.

While we were waiting for x-rays, a dear friend who works with, and for, Childcan, tracked us down to check in with us.  Renee is an amazing spirit and she works for an organization that actively steps in to support families like ours along many dimensions, from creating events where families can have fun together to paying for hospital parking.  To feel that someone understands your load and is trying to help you with it, most definitely lightens it!

After the x-rays, we headed back to the waiting room… the tape around the two halves of the cast were looser and Cailyn quickly realized that, without the snug support, she felt less sure of her steps.  When we were finally called to make our way to the examination room, the long walk to the last room in the hallway sealed her understanding that she had made a big step backward in her mobility.         

We reviewed the x-ray with both a student doctor and Cailyn’s surgeon… the surgeon was pleased with the straightness of her foot in the x-ray.  The amount of swelling complicates the picture but it’s certainly the straightest it has been in years!! 

The doctor reinforced that Cailyn is going to need a foot brace for immediate support… her goal is to eliminate her need for it with therapy.  What I didn’t appreciate until today was that Cailyn will need to use her crutches with her brace for as many as 18 weeks, slowly increasing the amount of weight she bears when she walks.

When we left, Cailyn was noticeably discouraged… she went from dancing at her school’s Athletic Banquet last night to relying either entirely or heavily on her crutches.  She appreciated in the moment that she wouldn’t have been able to enjoy her banquet as much if it was scheduled after today.

After booking her next follow-up, I found my Mom and Cailyn sitting down, resting and waiting for me.  I crouched down in front of her and I told her “I appreciate that the amount of stamina and determination that you’re going to require seems overwhelming right now.  I need you to know that you absolutely have both the necessary stamina and determination to make it happen.”  She got herself up and slowly worked her way down the next long hallway.

I have reminded Cailyn, at least a dozen times in the last few weeks, of the famous saying that the longest journey begins with one step.  Well, she has a very long hallway ahead of her… she’ll need to acknowledge her accomplishments along the way!!   

Recital Time

| June 4, 2016

People who have children in dance know that May / June is the time of year that the studios put on their end-of-year performances.  My girls both started to dance at Carousel when they were three and I’ve enjoyed every single performance that the studio has created.  Last night was Lauryn’s first recital performance of three and it is the performance that we all had tickets to see.  I love watching her dance… she has a grace and strength that work beautifully together.

  

This was the first year that Cailyn wasn’t performing.  Entering Grade 9 this last fall, she couldn’t manage dance on top of Basketball and weekly chemotherapy.  I thought she’d join for the second or third session but that thought was dashed when we learned that her foot surgery would be set for April.

Eleven years ago, I was talking to someone about my desire to get Cailyn into dance as a way for her to get therapy through something she had loved to do prior to her surgeries.  She recommended that I give Carousel a call, as she understood that there was someone there who had experience working with children who had neurological weakness.  I gave Carousel a call and I can say it has turned out to be one of the best decisions I’ve made for my girls’ activities.

I love the positive energy of the studio.  It is a place where all levels of ability are welcome, and all can flourish.  Each dancer is treated as an important piece of the overall puzzle and the students are inspired to grow their abilities and their creativity.  There are many spectacular pieces in this year’s performance but I think the performance that got the most vocal support was “Dance for EveryBODY’s” Tetris dance.  Supporting people who have different abilities is an important mandate for the leaders of Carousel and it is an aspect of Carousel that is embraced.  Watching one of the leaders and a few of the Dance Company’s members dance on stage with this class is an example of how the studio walks their talk.     

I thank you, Carousel, for the contributions you have made to my girls becoming the young women they are. 

Disability?

| May 30, 2016

Cailyn was working on her media project over the week-end.  Her topic is:  “how perceived / real disabilities have always inspired / continue to inspire contrasting reactions”.  She didn’t pick this topic out of a hat, it is a topic she crafted.  When I asked her what her goal was for this topic, she said she wanted to help eliminate the unfair, negative bias towards people who are noticeably disabled, because this bias leads to the assumption that they are “lesser” in some way or another.  She said she just wanted all people to be viewed as equals.

This topic is obviously very personal.  I was both surprised and proud of her for choosing it.  I tell anyone who hasn’t personally met Cailyn that they would never be able to tell, by looking at her, either what she’s gone through or what deficits she faces as a result of her journey.  Regardless, we have had almost 12 years of learning how Cailyn’s deficits impact her life and challenge her.

Her “disabilities” don’t define her but I’ve learned over the last couple of years that she seems to  accept ‘disabled’ as one of the many adjectives that can be used when describing her.  If her descriptive adjectives were positioned on stage, this particular adjective would be part of the chorus, not one of the leading actors.  I wonder, though, if she would still have this perspective if her deficits were more obvious to the people she encounters, because their reactions would likely be different – which could negatively change her opinion of herself.

In her presentation, Cailyn shares examples of acceptance and rejection of people with disabilities across time and culture.  Unfortunately, the number of examples of acceptance are totally overwhelmed by the number of examples of rejection.  All of her research inspired me to remark that every single human being has both strengths and weaknesses.  The rejection of people with disabilities is facilitated by our inability to remember this!  The degree to which someone is viewed as disabled is inversely related to the degree to which their strengths are obvious.  Just because you can’t see something, doesn’t mean it ain’t there!

When I was facilitating organizational teams, I was confident that our success was dependent on my ability to incorporate every participant’s ideas.  Anyone who has been on a team knows that some people on the team speak up, and some don’t (meaning that there are stronger voices and weaker voices)… unequivocally, if I could get everyone to participate, we would meet or exceed expectations.  The best solutions are made from respecting the most perspectives.  The best world is made when we remember / acknowledge that everyone brings something special to the table!

Here’s to Cailyn changing her world!!

Rowing

| May 27, 2016

Last night I was thinking about the idiom “stick your oar in”… and it got me thinking about how similar parenting is to rowing a boat.  The more I thought about it, the more I convinced myself of its truth.

Once you are a parent, you are always “IN the boat”… and, I don’t mean a yacht or a boat with a motor… I mean the good old row-boat or canoe (or kayak, I suppose, as long as it isn’t for just one person).

You don’t necessarily always have your oar in the water, pulling, but you always have the responsibility for steering the boat in the “safest” path possible.   My understanding of this responsibility exhausts me. In calm waters and sunny skies, steering the boat can be a lot of fun and can include many detours to special beaches or lagoons.  When the waves are high and the sky is sobbing, it takes everything you have to avoid rocks and even determine the safest path available.

If you’re fortunate, you have people who jump in and out of the boat to participate in the fun, to share in the beauty, and to help pull in choppy water and big winds.  But the steering of the boat remains the parent’s responsibility alone… you can’t jump out of the boat and give this responsibility to someone else, even when you want to!

It is this responsibility, I believe, that makes parenting the hardest thing for me.  There are moments that our unique journey magnifies the difficulty of steering but it’s also hard to steer through the “normal” stuff.  Can we afford a detour to a fun spot when I know we’re going to have a tough time getting to our next destination?  What’s more important… how organized the boat is or how much fun we’re having along the way?  What nutrition do I need to organize so we’re optimally fuelled?  Should we be rowing the same way another boat is… would that help us achieve our goal faster or better?

What I don’t question is that the “ideal” path is different for every single boat, because the weather patterns and destination points are different.  And, although we can “stick in our oar” to support another parent, we can’t assume we appreciate how difficult it is to steer their boat. 

I’m looking for less wind and sunnier destinations.  I’m wishing the same for you! 

Really Home!

| May 23, 2016

It’s the end of a wonderful long week-end.  I was definitely in celebration mode.

Last Thursday, Cailyn, Mom and I headed to London for the next step in Cailyn’s recovery.  First, the cast had to be removed and she had to have x-rays to see how her healing is going.  Her doctor is pleased with the healing but noted that her bones had noticeably thinned over the 6 weeks.  He assured us that, once she started putting weight on her foot, her bones will strengthen.  Next on the docket was the removal of the wires.  It went better than we expected but it was a challenging enough experience that we were all ecstatic when it was behind us!!  She now has a green cast and it will be on for 3 weeks.  So, since Thursday afternoon, Cailyn has been gradually increasing the amount of weight she’s putting on her foot.

Now that she can put some weight on it, I was hopeful that Cailyn would feel comfortable making the transition home.  It has been a sincere blessing that my parents have hosted Cailyn over the last 6+ weeks… it has facilitated Cailyn’s independence and has resulted in us having a great deal of time together.  We have all benefitted from their love and generosity.  As the expression goes, though, all good things must come to an end!  I think the idea of moving home has been intimidating for Cailyn.  Thankfully, we had some fun events planned this week-end that inspired Cailyn to test her ability to get in and out of a couple different homes.  It gave me the opportunity to say… if you’re up to trying to navigate our friends’ homes, you must be up to navigating our house!  So… on Saturday, she came home for the first time.  I took her back to my parents’ place at the end of the evening but the whole day was a positive experience.  When I picked her up on Sunday, she was open to considering sleeping at home.  So, at the end of a great day, she came home with Lauryn and I!  YAY!

I’m grateful for many things tonight… I’m grateful for the support provided by my parents.  I’m grateful for the fun times shared with special families.  And, I’m grateful my girl is home!  Here’s to her improved mobility!  Let the exercises begin!!

Fun and Games

| May 20, 2016

Tuesday night was a fun night.  Lauryn had a volleyball practice with her team.  About half an hour before her practice ended, the parents gathered and began their warm-up  –  for a play-off between the girls and their parents.  What a hoot!!!  

I was sincerely concerned about my ability to play.  The last time I played volleyball was when I was working for ABB in Ottawa in the 90’s.  So… it has been a couple of decades… holy doodle, where HAS the time gone!!  I haven’t played because my knees are pretty worn out… my mind is certainly more willing than my body.  However… I was completely unable to stop myself from playing with this great group of parents… and there was definitely a part of me that wanted to contribute to us showing our girls that we’ve  “still got it”!!!

In preparation, I taped my knees and I bought new knee pads that are supposed to provide some “extra” support.  I was a little worried that my heart could start racing again, but I knew there was no way to really guard against it… I would just have to sit out if it happened.

Within a couple of minutes of being on the court, I realized that my competitive spirit is much stronger than my knees!  Apparently, a desire to compete doesn’t have to be exercised to be maintained.  I have donned my game face hundreds of times over the last 11+ years, but never with the same sense of enjoyment!

Thanks for a great experience, team!!  “Faking it ’til I make it” is much more fun on a volleyball court!!

Change

| May 16, 2016

This weekend Lauryn and I moved home.  My parents were returning from their get-away to Missouri on Saturday and we had to move our stuff out so they could move their stuff in.  It’s a bit dramatic, but I was truly surprised by the volume of things that migrated to Mom and Dad’s apartment over the course of the 9 days we stayed there.

It feels good to be home but things still aren’t “right” yet.  They will feel right when Cailyn returns home.  Cailyn’s appointment this Thursday (19th) involves removing her cast and getting an x-ray to see if everything is healing well!  I’m assuming from what we’ve heard that the two wires will be pulled out and she’ll get a walking cast if everything is going to plan!  The medical professional who put on her current cast suggested that she have pain meds prior to this next appointment.  I might need a little medication, too!  Every time I think of the wires being pulled out, I feel a little queasy 🙂 !!

With a walking cast, Cailyn will be able to navigate stairs much more easily and returning home won’t seem as uncomfortable an idea for her.  She has been taught how to use crutches but doesn’t feel comfortable using them on stairs.  She prefers her scooter for maneuvering around my parents’ place and her wheel-chair to manage most of her school day.  She has used her crutches but they are not her go-to.  I think this will change when she can put weight fully on her left foot.  She originally thought she’d try to do a lap at Relay for Life on her crutches but I believe every lap she did was in her wheelchair.  I pushed her for the Survivor Lap and I believe her team-mates helped her with any other lap she did.

We are so thankful she’s been able to stay at my parents’ place… living on one floor has facilitated her independence and we’re all benefitting from my parents’ hospitality!!  That being said, I’m looking forward to getting great news on Thursday and packing for another move on the week-end!!

Relay for Life

| May 11, 2016

The Relay for Life event was an exceptional experience.

We arrived early to participate in the Survivor Dinner.  It was a delicious meal served by the students who were members of the committee who organized the whole event.  I couldn’t stop thinking about the fact that all of the attendees were personally touched by a life-threatening journey… we were all survivors or supporters.  We have all faced the thought that there was no guarantee of survival and we have all “walked” beside others who haven’t survived.  My thoughts ricocheted between joy and sorrow.

After dinner, Cailyn wanted to find her team.  They were in the centre of the track, assembling their tent.  Everyone was understandably excited.  There was a really neat energy swirling around them and they surrounded Cailyn with it.   It was a lovely evening, the sun was shining and the temperature was great.  Although I realized it would be difficult for her to leave the experience, I was thankful that she was able to touch it for more than a couple moments.

Everyone gathered in front of the podium before the first lap, the Survivor Lap, to listen to two students perform “Titanium” and to hear various dignitaries speak about the specialness of the event.  When it was time for the first lap, all of the Survivors’ names were called and they formed a line of yellow.  The participating students joined the line and walked with the Survivors… Cailyn’s team members were right beside her.

After the lap and a few photo opportunities, I left Cailyn at her school to enjoy some more time with her team.   She stayed a little longer than the doctor recommended but still missed the Luminary ceremony.  The participants were all given a white paper bag that they could decorate (the luminary).  Cailyn decorated her luminary and dedicated it in memory of a dear friend.  Candles were put inside the white bags and they were placed around the track.  About an hour after we left the school, the candles were turned on, lighting up both the track and the decoration.

Cailyn had a fantastic time and didn’t want to leave when the moment came.

The Relay for Life involved celebrating survivors, honouring those who have lost their battles, and raising money to fund cancer research.  I’m sure that the research required to find the cure for Cailyn’s tumour is already underway.  This is just the beginning of her Survivor Laps!

 

Fever…

| May 6, 2016

Yesterday morning started with a question… I got a text from my Mom asking, “Are you up?”  It was a unique question and it made me wonder what was going on.  I texted back “yes”.  Within 10 seconds, my phone rang and I heard my Mom say, “it’s a sunny day outside but it isn’t sunny inside… Cailyn has a 38.8 degree fever”. 

Immediately, I was concerned for her foot!  What if there was an infection brewing below the cast???  Honestly, it is amazing how quickly the dark side invades our thoughts!  My Mom assured me that her foot felt fine and that there didn’t appear to be any heat, swelling or redness.  She simply had a very sore throat and neck.  The next question of the morning was, “what do I do?” 

I called our hospital team at Grand River Hospital and one of our nurses said that I needed to bring Cailyn in.  Anyone on chemotherapy that experiences a fever must be examined to determine first, if they have enough neutrophils (the part of the white blood cell that fights infection), and second, the cause of the infection.  Cailyn’s last chemo treatment was on the 22nd of March but I learned yesterday that the same process has to be followed for 6 months after the last chemo.  So… it was off to the hospital for us! 

As I was waiting for my Dad to pick Lauryn and me up, so I could use their car and parking spot while they are enjoying some time in Missouri, my heart started racing.  I’ve had this experience before, so wasn’t horribly concerned, until my upper lip and hands started to tingle.  I realized that I was going to have to get Cailyn into the hospital in her wheel-chair while my heart was racing.  I knew, from experience, that my heart would eventually slow down, as long as I sat still and breathed deeply for a significant period of time.  I knew that until I had that time, my heart would continue racing… it was a little overwhelming…

When we got into the unit at the hospital where Cailyn has received phenomenal care for 11 years, the nurses asked me if I wanted one of them to take me down to Emerg… I thanked them and said that I really needed to be with Cailyn while she was assessed and would be fine once I sat down long enough. 

I was feeling much better by the time Cailyn got poked for blood-work! Whew!!  As per protocol, a few different cultures were taken to determine what she might be fighting.  Strep throat was on the list of considerations. For the first time in over 11 years, there was no port access because there was no port!  Interestingly, Cailyn wasn’t sure how she felt about it!

Thankfully, her neutrophil count was actually above the normal range… suggesting she had plenty of white blood cells to fight.  Considering how quickly her fever came on after a scratchy throat, the pediatrician prescribed antibiotic and sent us home with instructions to make our way back to the hospital if Cailyn still had a fever today.

Tonight is “Relay for Life”, a night-long function hosted by her school to raise money for cancer research.  Cailyn is on a team and has raised money but won’t be staying for the whole night with her team.  Her doctor told her a couple hours, if she felt up to it, was okay, but that staying for the whole night is a no-no!!  She will definitely attend the Survivor dinner and the first lap done by the survivors.  I’ll get the honour of attending the dinner and doing the first lap with her!

I’m very happy she feels well enough to attend the first part of the evening and anticipate a bit of an argument when it comes time to leave!  🙂  

Tuesdays

| May 3, 2016

I woke up this morning and felt a sense of “oh boy, it’s Tuesday”.  Tuesdays have been special days for years, but not always in a way that you’d want to celebrate!

Philosophically, each day is special, but Tuesday’s claim-to-fame in our family has been that, over the last few years, it was the auspicious day that Cailyn has received her chemotherapy.  When she started chemo again in 2012, we went to the hospital on Mondays because that was the day that Cailyn’s oncologist had her clinic days in London.  Within the year, our hospital days changed to Tuesdays, as our oncologist moved her clinic days.

It has been over a month since we stopped our weekly trips for chemo, and yet the idea that “Tuesdays are chemo days” lingers. The first few weeks after stopping, the fact that we weren’t pointing our car in the direction of the hospital, didn’t seem odd at all… likely because we were caught up in the excitement of Cailyn’s foot surgery, hospitalization, healing process, and school re-integration.   However, today was a different story… I woke up dreading this day… forgetting that Cailyn is getting a break from chemo.  

Over the last few years, our trips to either Grand River Hospital or London Children’s Hospital have interrupted the “normal course of things”.  And then, the after-effects of these trips would interject themselves on the normalcy of life for the next few days.  [Although there really is nothing normal about a journey that involves weekly trips to a hospital for chemo!] They say it takes 21 experiences to create a habit… well… I’m confident that’s true.  What is fascinating to me is how easy it is to both revert to normal, where Tuesdays don’t include chemo, AND to fear the abnormal, a return to the drama.

I’m aiming to break the habit!