Thursday

Cailyn and I visited our local hospital this morning to get her assessed by the on-call pediatrician.

On Tuesday, I learned that she had a pain in her left side, just above her hip.  I asked her if she had felt the pain after making a specific movement, and she said “no”.  She also shared that she started feeling the discomfort on Sunday.  However, no more complaints were uttered that night.

As it turns out, the discomfort she felt Wednesday morning grew over her school day until the point that it was bothering her in Strings class, when raising her left arm to hold her violin.  Consequently, when I picked her up from school yesterday, she shared that she didn’t think she should go to her swimming class.

I asked her again if she was sure she hadn’t strained or stressed her muscles… from my experience, this is the most desirable cause.  She couldn’t associate the discomfort with a particular movement.  Not being able to chalk it up to a simple cause, it’s amazing how your brain quickly considers all of the other more complicated causes.

I called our nurse case manager in London and her recommendation was for Cailyn to be assessed by a pediatrician… the discomfort had increased day by day, without an obvious physical cause.

Walking back down the familiar hallway caused opposing emotions… happiness at seeing the wonderful health-care team we have worked with over the years and distress at revisiting the anxiety often experienced by parents worried about the health and well-being of their kids.  The longer we’re on this journey, the more aware I am of the many different signals of disease.

During our visit with the pediatrician, I disclosed my sincere wish that this discomfort was muscular!  The doctor prescribed some tests, which we completed before I took Cailyn back to school.  I am now waiting to hear the results.

Here’s to great news!!

Vacation!

I am way overdue updating this blog!!

I did hear back from Cailyn’s oncologist after she had a chance to sit down with the neuro-radiologist and review Cailyn’s scans.  She confirmed that the tumour appears stable since the November MRI but shared that, with the progression that has occurred over the last year, Cailyn will have to start treatment if there is any further growth over the next 6 months.

It would be easier to enjoy the “lull” between MRIs if I knew for certain that her tumour wasn’t growing during this same time period.  The most constructive approach is obviously to assume that everything is fine unless proven otherwise.  You would think that my 12 years of experience, over more than 50 MRIs, would strengthen my resolve and ability to stay in this mindset but I can admit that I have NOT perfected this skill.

A week after our appointment in London, “If this is Tuesday…“, we headed back to London for another ultrasound to figure out the positioning of the tubing from her port.  Unfortunately, the results were inconclusive again, and because the scan is abnormal, we’ll have to go back for a different type of test.  When the doctor actually came in the room to discuss this, I could tell the moment when Cailyn realized that missing school and driving to London had achieved nothing… she didn’t say anything but I believe her frustration mirrored mine.

On a lighter note, we just got home from our trip to Hilton Head for March Break.  Although the weather was cool, we had a fun time biking, sightseeing in Savannah, connecting with friends from Waterloo, completing aerial adventure courses, spending some time on the beach and in pools, and some of us enjoyed shopping!  My girls loved having their cousins with them… I didn’t witness one uncomfortable moment between them… quite a feat considering they were in each other’s space 24-7 🙂

Four of the next seven weekends are busy with volleyball tournaments.  The balance of the weekends will be consumed by a cottage visit, group tickets to Singing in the Rain, two milestone birthday parties and a sixtieth wedding anniversary.  I’m counting on this “busy”-ness to help me stay in the moment!

Here’s to many great moments!

If this is Tuesday…

There are many, many Tuesdays over the last number of years that have involved a visit to the hospital for Cailyn and me.  This last Tuesday was no different!  I picked her up mid-morning from school and we headed to London for a follow-up appointment with her oncologist.

We had a few conversations over the three hours we were there… a little fortuitous, a little serious, and a little “fun”.

On the fortuitous front, we ran into one of my friends, a fellow Mom of a brain-tumour survivor.  She was walking back to her office and our chance meeting gave us the opportunity to catch up with each other and our daughters’ journeys over a cup of coffee.  The fact that we were over an hour late going into our appointment actually facilitated a better visit.  During the course of our conversation, my friend shared information with us that reinforced some of the serious risks of radiation.  I haven’t circled back with Cailyn to discuss what we learned, but having another adult, that Cailyn both knows and respects, reinforce what I have shared with her, is a sincere gift.

Our discussion with Cai’s oncologist was certainly more serious… it covered the latest scan results, the need to follow-up on her last cardiology ultrasound, port options, and what’s next.  Dr. Zelcer is going to review the MRI results with the radiologist to confirm stability of Cailyn’s tumour.  She appreciates why this confirmation would give us peace of mind.

After Cailyn’s port removal last April, she had to have a cardiology scan to see where the “unretrieved” tubing was situated.  Unfortunately, the results were unclear and the positioning of the tube needs to be determined.  The arrangement of this additional test hasn’t been on our radar with the advent of the progression in her tumour.  It’s back on the radar and her doctor is going to work with cardiology to get this new test ordered.  Stay tuned.

Interestingly, Cailyn’s question to her oncologist was where her next port could be put.  A couple of different options were considered, along with the option to have a PIC line put in.  Cailyn was more curious about this latter option than I would have anticipated.  A “Port-a-cath” is entirely under the skin, whereas a PIC line is like an IV.  Thankfully, it’s not a decision that has to be finalized at this moment.  The one thing we do know is that a new port can’t be put back in the place where one rested for 11.5 years!

I wanted peace of mind.  Peace of mind that the tumour truly is stable and the peace of mind that would come from learning we have some emotional wiggle room.  I asked her doctor if there was data that might suggest that stability could continue for a longer period of time.  I qualified by asking if we could assume that Cailyn wouldn’t require treatment this next year.  Her answer was “no, we can’t assume that”.  Interestingly, Cailyn’s comment to me, after the appointment, demonstrated where she’s at emotionally.  She said that even if her doctor HAD been able to tell us that she likely wouldn’t need treatment this year, she wouldn’t have believed it.  Ouch!

The “fun” conversation was with our social worker.  I asked if she could follow-up on the status of our wish trip with the Children’s Wish Foundation.  Cailyn would like to take a river cruise… a trip I’m confident we would all love!  Hopefully, trip details will be forthcoming.

Here’s to more “fun” than “serious”!!

Sublime

From the ridiculous to the sublime… that is sometimes how we roll!!

A few weeks ago, Cailyn’s Auntie Corinne organized an introductory “sitting volleyball” session, which was sponsored by the KW Predators Volleyball Club.  Cailyn didn’t really want to participate, but she did, and admitted that it had been a lot of fun.  Volleyball has never been one of Cailyn’s ‘things’, because without depth perception due to her double vision, it is quite difficult for her to determine where the ball is.

Knowing her love for being on a team, and her acknowledging that sitting volleyball could be fun, I signed her up to participate in the “Sitting Volleyball” competition at the ParaSport winter Games in Brantford last weekend.  These Games promote public awareness of para-sports and showcase Ontario’s best athletes.

Cailyn and I had the most exceptional weekend together, in the company of some very talented athletes  –  not only from Ontario.  Cailyn had 3 current members of Canada’s National Sitting Volleyball Team in her group of eight  (the other 3 teams had national representation too).  These men and women are skilled, competitive and fun-loving, and showcased the sport beautifully.

Cailyn had some wonderful moments on the court across the two days.  Her team got her in to every set, and were tremendously supportive and congratulatory  –  “high-fiving” when she had success serving or making contact with the ball  –  a most positive team experience for her.

During one of the matches, I was helping with the 3-ball system.  Cailyn had just successfully served her second serve in a row and her team-mates were all giving her high-fives.  I was so focused on trying to get Cailyn’s attention after her serving “run” was over, that I had to be reminded to toss the ball to the next server.  Whoops!!

Cailyn shared this experience with one of her dear friends, Amanda.  They were the youngest participants with a disability.  At the end of the competition, the girls were presented with volleyballs that were signed by every national team athlete, past and present, at the competition.  Cailyn was truly shocked and touched by this gesture… these wonderful athletes with great character were acknowledging her courage to participate. Wow!

Driving to Brantford on Friday, Cailyn clearly expressed that she was very nervous and really didn’t want to participate.  I totally got it.  She knew she didn’t have strong skills and she also knew that the participants were all adults and that they would have more skill than she had… I have to admit I wouldn’t have wanted to go either.  Regardless, she went and participated as fully as she could.  On the way home from Brantford, we discussed the amazing reward she received as a result of taking the risk to participate.

Amazing week-end with wonderful memories.  Thank you to everyone who contributed, with special gratitude to her teammates pictured below!

Results

Bottom-line, the MRI report says that Cailyn’s tumour has not grown noticeably!!  With everything leading up to this, we are very surprised but really happy that we don’t have to turn around and head back to London. Unfortunately, we also have this feeling “I sure hope that there really isn’t growth.”  I’ve talked about it before, there is a real power in the expression “once bitten, twice shy”, and this situation proves the point.  The only reason we aren’t jumping up and down is the experience we have had over the last year with getting stable results, only to find out that there had actually been growth.    

We are temporarily challenged to fully embrace the news and rejoice in it, but I’m sure we’ll get there!!  There were some new observations made in the report that I don’t believe I’ve ever seen, and a couple extra measurements that aren’t easy to put into perspective because I don’t have previous measures of the same thing.  I have asked Cailyn’s oncologist’s to share her perspective and confirm that her tumour really is stable.  I appreciate from my conversations with her that treatment is NOT off the radar for good but we certainly have a “stay of treatment” for right now.

So… here we are back at “the moment”… the only “place” we have any capacity for peace and joy.  We will do our best to put our apprehension into a black-box and ignore it.  This is much easier said than done.  This “stay” will certainly make it a little easier to enjoy the special moments planned over the next few weeks, starting with the Parasport games this week-end for Cailyn.    

Thank you for your positive thoughts and prayers.  I know they make a difference.

Game Face

Yesterday, Lauryn’s volleyball team had their “game-face” on… they won a gold medal at a 13U tournament, having not dropped a set.  I commented to Lauryn on the way home that, although it was wonderful that they were going home with first place, I was most impressed with the team’s composure and grace.  I’m so happy that she has this experience of playing with a great group of girls.

I now have to secure my game face for the next few days.  Cailyn’s MRI is tomorrow and the “treatment decision” is looming.  Yes, there is a bridge that I’m not supposed to cross until I get there, but I have moments of sincere fear that blow that particular resolution out of the water… fear that the tumour has grown significantly, and fear that she and I will remain on opposite ends of the treatment decision.

I can’t begin to imagine how Cailyn is feeling… what does a 15-year-old teenager, faced with life-threatening decisions, think about on the eve of another scan?  How does she cope with this crappy situation?  I wasn’t successful quieting my thoughts this week-end, even while watching the girls play volleyball.  How does she engage with school and classmates and everyday “stuff”?

This journey is hard enough when you’re able to stay hopeful.  Here’s to wisdom and clarity.  Here’s to each precious moment in which we have the opportunity to create a meaningful or fun memory.  Here’s to the positive energy sent to us by our amazing supporters.  Here’s to counting our blessings from the other end of the stick.

Yes… I must get my game face on.

Short Strokes

We’re getting down to the short strokes.  Cailyn’s next MRI is on February 7th.  All of the waiting and wondering will soon be over.  I have to admit I’ve crossed some bridges mentally and emotionally before we’ve gotten there… something I’ve been coached not to do (thanks Mom).  Soon it will be the actual physical exercise of getting to the bridge and choosing our method to cross it.  it’s something we haven’t completely resolved…

Yesterday morning, I woke up in a panic… and it wasn’t because my alarm clock didn’t go off. All of a sudden I thought… “OMG, how am I going to deal with weekly chemotherapy again!!!” Of course, that is assuming that chemotherapy is the decision that Cailyn and I land on! If it was just the physical logistics of getting to and from the hospital one time per week, it might seem almost palatable. But it’s so much more. It’s dealing with the discomfort and nausea that inevitably comes; it’s watching for fevers; it’s wondering if Cailyn should stay home to avoid someone’s potential germs; it’s taking her back into the hospital when she does have a fever and hoping that her counts aren’t so low that she has to stay in there for a minimum of two days. And it’s not like you can ignore that these are potential outcomes… instead, it’s my job to make sure I’m actively looking for signs that suggest there could be an issue… uggghhhh!!!

My heart started racing and I jumped out of bed.  The next thought I had was… “if this is the way I feel, how the heck is Cailyn feeling??”

On the way to Lauryn’s volleyball tournament shortly after, “The Fight Song” played on the radio. I wondered to myself if it was the universe’s way of sending me a message. This one phrase from the song really resonated with me… “Cause I’ve still got a lot of fight left in me!” I repeated it to myself a few times and wondered if it was true. My answer was “yes, I do still have a lot of fight left in me.” Of course I do… there’s nothing more important than my daughter’s health and well-being to fight for, and I’ll try to do my best.

Along the “fight” theme, Lauryn’s 13U team had a few fights of their own at their 14U tournament.  They capped their efforts with a bronze medal and had moments during the day that were absolutely exceptional.  I love to watch her team play… the group of girls is so wonderful… and I really enjoy hanging out with the fun and caring group of parents… it’s a wonderful combination!

Here’s to staying strong!!

Symptoms?

This is an overdue update.  Rather than writing about my intense conversation with Cailyn last Friday, I was trying to process it and figure out what I needed to do… more on that later.  Then, Monday arrives and brings with it some interesting symptoms.  

My first thought was that the discomfort she was feeling was associated with her trying sitting volleyball for the first time on Sunday and using muscles she hadn’t used before, or recently.  I gave her some ibuprofen and suggested that the feelings would pass.  Other thoughts circled in my head, though, and I was concerned with how unsettled she was with the unique sensation.  The muscle stiffness from exercising stopped a couple days ago but the pain and pressure she feels in her chest and at the top of her head when she takes a deep breath have remained.  She’s also experienced her heart racing with exertion.

This morning, Cailyn still felt this discomfort.  For the first time ever along this journey, at Cailyn’s request, we found ourselves in a very familiar place… Grand River Hospital… to get her assessed by a pediatrician.  I’m waiting to hear back from the pediatrician, after she’s had a chance to talk to Cailyn’s oncologist.  I’m not expecting anything definitive today… I think that will come on February 7th, when Cailyn gets her next MRI.    

I was surprised last night when Cailyn said “Well, if this is a symptom, at least we know it now!”  On one hand, I think she would be disturbed by the potential that this discomfort was a potential sign of growth.  But on the other hand, if we learn on the 7th that her tumour has grown noticeably again, having realized a potential new symptom might facilitate her accepting treatment to avoid any further symptoms.  The last two times she started a chemotherapy protocol, there were no obvious symptoms.

If there is further growth evident on the 7th, we will both be significantly challenged to choose the treatment option.  Cailyn’s preference is the treatment that will take the least amount of time, and my preference is the treatment with the least perceived risk.  I wish our preferences overlapped, but they don’t yet!!

Here’s to getting on the same page!

2017

As I have mentioned a few times, this year promises to be challenging.  Two imposing mountains are in my view.  

The most intimidating and overwhelming mountain is the growth in Cailyn’s tumour.  Being Cailyn’s advocate requires me to use my project management skills.  If the desired outcomes of this project weren’t so critical, the management of it would be so much easier.  When I speak, I share the different roles I have had the opportunity to play… speaker, facilitator, organizational coach, leader.  The role of “Advocate” is the only role I haven’t willingly embraced.  I vividly remember the moment I realized that I had to take on this new role… I had a physical reaction to it… shivering and sweating at the same time.  I refer to being an advocate as the most important role that no one wants.

Intervention/treatment is looming on the horizon and the fine details need to be ironed out.  First order of business is to choose the intervention… it’s either chemotherapy or radiation.  Cailyn is having trouble “stomaching” the idea of more chemo after all the years she has already had to endure it.  I can’t stomach the potential long-term risks of radiation in the brain-stem.  She prefers the idea of radiation because the preparation and treatment is completed over a couple months, whereas weekly chemotherapy will go on for at least a year and a half.  She doesn’t have the bandwidth to worry about the potential long-term consequences of radiation.  That’s my job… looking to the future and trying to make decisions that optimize the long-term for this beautiful girl!  

The climb for the second mountain isn’t quite as daunting and arduous but it’s still going to be a significant challenge to tackle both mountains.  This second mountain is my career.  Although I have had some demanding and rewarding projects over the last decade, I need to make career success one of my top priorities.  I’m thankful for my diverse skill set and amazing experiences and I’m visualizing how I can create opportunities that allow me to use my strengths to help companies and individuals achieve success with their goals.  Here’s where I’m hoping that the expression “necessity breeds invention” is a real truism!!

These crazy health journeys test every care-giver.  New priorities rise to the top of the pile and easily consume the time and space normally available for the priorities and interests associated with family and career. We are tested emotionally, mentally, physically and financially and our bandwidths along all of these dimensions narrow, dramatically at times.  For success climbing both mountains, it is going to be critical for me to accept “what is” and to focus on what I CAN do.  So… on my way to creating my vision, I’m on a job hunt… any leads are most welcome!

Stay tuned!!!

Special Moments

You know… when there’s an elephant in the room, it’s hard to think about anything else.  Just when you’re enjoying holiday cheer with people you love, you get smacked in the head with his trunk or you get squashed against the wall with his backside.

I’m so thankful that the many special moments we’re experiencing over these two weeks makes it easier to ignore the elephant.  Here we are on the last night of 2016 and, rather than worrying about what’s next, I’m enjoying music, games and good cheer with my family!

I hope, as the clock ticks closer to midnight, you approach 2017 with more excitement than dread.  I wish you good health, I wish you time with people you love, and I wish you respite from your concerns and challenges.

Here’s to 2017!