Peace and Joy

| December 24, 2016

It’s that time of year.  A time for giving and a time to cherish moments with family and friends.  I am so thankful that our blessings are many and our needs are few… there are many who can’t say the same.  

The girls are thrilled that the only things that are actually planned over the next couple of weeks are social events.  I tend to get overwhelmed by all of the preparations and additional activities that this time of year brings, and consequently, I thoroughly embrace that particular moment that “nothing else can be done” but enjoy the special moments with loved ones… 6pm on Christmas Eve.  

It’s Christmas Eve Day and Cailyn is decorating ginger-bread people and I am going through gifts and stocking stuffers with the intention of “getting organized”… this is usually the time I feel “oh man… I need another X”, or “what was I thinking?”  Lauryn is out for the afternoon but she’ll join us in time to have ‘drinks’ with friends and dinner with family!

Cailyn’s health journey understandably heightens the emotions accompanying this special time of year.  It increases my focus on the important things, which I know to be one of the blessings of our journey, but it also compromises my capacity to simply enjoy the moments and remain hopeful.  I have noticed that fear requires no expenditure of effort, it just rises up.  On the other hand, hopefulness must be carefully and consciously manufactured… in the days following our meetings in London, I have definitely struggled to remain hopeful… 2017 promises to bring difficult challenges our way and I appreciate that I’m going to have to find a way to rally.

To honour the season, I’m going to use the mantra “Peace and Joy” when I start worrying about what’s looming around the corner. Hopefully, it will remind me that the only place that either of these qualities can be realized is “in this moment”.  The better I am at staying in the moment, the more I will sincerely appreciate the joy or peace in them.  

I wish you Peace and Joy, too.  Treasure the opportunities you have to be with the person or people you care about… take nothing for granted because these special moments are promised to no one.

May 2017 bring you and yours good health!

What a day…

| December 14, 2016

An update that seems to have been forever in the making… and yet, there’s still much to be decided.

It was a very long day yesterday, involving over 3-1/2 hours of meetings with three specialists about the latest growth in Cailyn’s tumour. Thankfully, my headache didn’t start until we were driving away from the hospital but it was bad enough when we arrived at my parents that I was actually considering NOT having a glass of wine. In the end, the wine won!

On the side of “Positive”, we had great interactions with all three of the specialists, and we have some wiggle room to both make the best decision and for Cailyn to have a little more normalcy before jumping right back into the fray. On the side of “Negative”, an intervention will be required and there are significant cons for each intervention. We have the undesirable task of choosing the best of the worst.  Before I share some of the details, I would love to thank my brothers (Mark and Michael) and parents for helping me prepare the questions for all three appointments, my brother Michael and parents for travelling with Cailyn and I to London and participating in the meetings, and our nurse case manager for coordinating everybody’s busy schedules. 

Due to space restrictions, only Michael, Cailyn and I met with the neuro-radiologist to review the last 8 MRIs and to learn why it’s so difficult to reproducibly measure the tumour’s dimensions. I felt he understood and empathized with our situation – growth of any kind in the brain-stem is alarming – and actually led us to the film library where he suggested we get CD copies of her MRIs so we can measure them ourselves at home. He told us he would welcome us contacting him about concerns with any dimension. Unfortunately, there’s no way to see what nerve nuclei Cailyn’s tumour is at risk of “bumping up against” with more growth… he actually felt that any of the cranial nerves could be impacted negatively. Although we can see a MARKED difference between the MRI at the beginning of this year to her latest MRI, the tumour does not appear to have doubled, like the measurements would suggest. I pointed at a very bright point on the scan (that wasn’t near her tumour) and asked “what is this”? He said it was her pituitary gland, and the brightness of it, along with its shape, suggested to him that Cailyn’s hormones were “pumping”. This could definitely explain the latest changes in her tumour, and support her oncologist’s belief that further growth will happen.

We all met with both the radiation specialist and Cailyn’s oncologist. I have been afraid of radiating Cailyn’s brain-stem for over 12 years. The radiation specialist did a great job of sharing information about the process, its risks, and the steps taken to minimize the risks. The greatest source of my concern for radiation is that there is no redundancy in the brain-stem… each cell is unique and if any particular cell is destroyed or weakened, the unique purpose performed by that cell is lost or compromised. We learned that the process for neutralizing all tumour cells requires that the radiation be applied to a healthy band of normal tissue surrounding the tumour as well. Ouch… what a scary proposition. Cailyn conceptually likes the idea of radiation because it’s a much shorter process. The chemotherapy protocol is comparably long and drawn out.

We also discussed the different chemotherapy protocols available with Cailyn’s oncologist. She has been an important part of our team for a dozen years. We’re quite familiar with two of the protocols discussed, as Cailyn has been on both of them. A third protocol is quite scary, as it has produced some good results but is highly toxic… fundamentally decreasing her quality of life while on it.

We gained important insight from all three of these meetings and appreciated the openness and honesty of each specialist. Assuming that Cailyn doesn’t experience new symptoms, she will have another MRI in February. If she feels any change, her stay from treatment is over, but we’re hopeful we have some time to make peace with the best option for her.

It was a very long day for Cailyn. I can’t imagine what she felt but she managed the difficult conversation around options and risks with grace. When I dropped her off at school this morning, I put down the window as she was walking away from the car and yelled “I admire you Cailyn”. I saw her smile before she turned away… I’m glad she couldn’t see my tears.

Next…

| December 10, 2016

Next Tuesday, we will be meeting with Cailyn’s oncologist and a radiation oncologist to gain as much information as we can about the options that are available to us for stabilizing her tumour.  We are also getting the opportunity to meet with one of the neuro-radiologists who has interpreted her MRIs. 

It’s a weird feeling… the last 10 weeks have all led to this moment and yet it seems like we’re moving in slow motion towards it… kind of like the car accident that happens seemingly instantaneously but you have all kinds of time to wonder when you’re going to experience the actual collision.

There will be a little posse of us in the meetings… the emotional support is a true blessing and the perspective and informed discussion after the meeting will be invaluable to me gaining some semblance of peace of mind with Cailyn’s and my decision.  This will be the first time Cailyn has participated in this kind of conversation.  It has been over the course of this last year that she has demonstrated a preparedness to participate in her health decisions and has unequivocally stated, “I am going to be in the meetings!”  She is obviously a critical part of the solution but her participation is definitely a double-edged sword for her… knowing more will require her to cope with more.    

Our task for this week-end is to finalize our list of questions for each of the specialists.  What makes this decision so difficult is that there really is no way to know for sure which of the many potential risks might be realized by Cailyn.  And, as we’ve learned along the way, there can be outcomes that no one anticipated in the first place, because each child is unique in how their body responds to the intervention.  

I anticipate some very interesting conversations as we are desperately looking for answers in an arena where there are simply no guarantees of short-term effects and long-term outcomes.

Wish us luck!!

While waiting…

| December 1, 2016

I am so thankful to have this way to communicate what I’m feeling but I’ve definitely struggled with what to write over the last couple of weeks.  I am not creative enough to think of another way to express how entwined my fears and concerns for my daughter are with everyday life… and, because these fears and concerns consume a significant portion of my thoughts, I write nothing..

Cailyn had her follow-up MRI last Friday.  The preliminary report documented an increase in both of the dimensions being followed.  Obviously this was NOT the result we wanted but I wasn’t truly surprised after seeing that, in her September MRI, the tumour was more enhanced.  It remains “avidly enhancing”, and the size of the enhancing part has increased by the same amount from September to November that it had from June to September.  Suffice to say, the preliminary results are troubling.  I am anxiously awaiting information from Cailyn’s oncologist.  A complete understanding of potential next steps isn’t possible until we hear about the tumour tissue testing results from New York University… ugggghhhhh.

Over the last week and a half, the girls and I have been “detoxing”.  It has been a welcome, sometimes challenging, diversion with modifying meal plans, chopping kilograms of veggies and stocking up on “clean” food.  The idea was initiated by the “volleyball mammas” and when I signed on, Cailyn thought that she’d like to participate.  The rules were, “no sugar, dairy, grains, beans, legumes, caffeine, alcohol”.  The obvious question was, “ok… what can we eat?” 

Cailyn followed the rules exactly, with only one deviation… we got together with friends for dinner last week-end and she helped one of her friends make paella.  So, the deviation was that we had rice for one meal… boy, that paella was fantastic.  Her will-power was exceptional when she volunteered for a bake sale on Saturday for the volleyball team, and sat in front of a table of goodies for over 10 hours, without eating any of it!  Lauryn just signed on for the “no sugar” part of the detox.  Amazingly, none of us felt like we needed to snack at night, and we never experienced being uncomfortably hungry.  Cailyn wants to continue to have a certain number of detox days per week… I suggested 2 days and she suggested 4 days… I asked her if we could compromise 🙂 !!

Anyway… waiting, waiting, waiting… trying to control what we can in the meantime.  Will let you know what’s happening when we know!!    

Spinning

| November 16, 2016

My mind is so cluttered with “what ifs”, that I haven’t successfully figured out what to write.  Spinning around in my head are options, feelings, and the more mundane tasks involved with our day-to-day logistics.  

It’s been almost 7 weeks since I learned that Cailyn’s tumour has grown and I had both hoped and expected that we would know by now whether or not Cailyn’s tumour has the right inhibitor to participate in a trial for a “targeted therapy”.  I learned yesterday that the testing that has been done so far is inconclusive about one of the inhibitors and will take another two weeks for the other inhibitor.  Ugggghhhhh… this waiting is painful, as everything about this growth occupies an immense proportion of my waking thoughts.   

We’ve had some great moments, provided by wonderful distractions (Thanksgiving with our family, two fantastic concerts and a Raptors game at the Air Canada Centre, a night out with the volleyball “mommas”, a volleyball tournament, and a family sleep-over), but no moment has effectively obscured the fears and concerns that are natural by-products of my daughter’s health-care journey.  These fears can pop up with zero provocation or effort, spinning uncontrollably into any moment, anywhere, regardless of how wonderful the moment.

Cailyn has her next MRI on Friday the 25th of November.  I’m not the only one who will be anxiously awaiting the results.  Unfortunately, if we don’t have the final report by the end of that day, I will have to wait until the next week to hear.  I am so very hopeful that her tumour hasn’t grown anymore but I’m prepared to hear that we have to travel back to London to discuss options.  What is that expression… “hope for the best, plan for the worst”… yep… that’s exactly what I’m doing…   

Potential

| November 6, 2016

This has been a week for focusing on Cailyn’s potential.  Stuffing my mind are thoughts about the potential risks to the different treatment options, and the impact of all of this craziness on Cailyn’s academic potential.

I have had a headache the last few days that has been impossible to ignore.  Wondering about how hard the winds and rain are going to hit is emotionally very uncomfortable  –  which moves me to wonder if that’s what is producing the physical pain I’m feeling…..

Cailyn’s oncologist followed up with New York on Friday, but there’s no results from the tissue testing yet.  Hopefully, we’ll learn this week if Cailyn’s tumour has the inhibitor required for her to take part in the trial.  If she has the inhibitor, I imagine we’ll be heading to Sick Kids in Toronto shortly after finding out.  If she doesn’t have the inhibitor, we’ll be waiting until the 25th to learn what has been going on with her tumour since her last scan.

The Provincial Tumour Board recommended three treatment options if she doesn’t qualify for the trial… there are two chemotherapy protocols and one radiation protocol.  I have shared these options with Cailyn and they have been percolating in both of our minds.  She shared with my parents that she was leaning towards radiation because the treatment takes the least amount of time.  I totally understand why, after just finishing 4 years of weekly chemotherapy in March, she wants the “fastest” treatment.  Radiation scares me… I have told her that part of the process of choosing the best option, is considering all sides of the decision… pros and cons.  Radiation brings with it the potential for a couple of gargantuan cons.  When I told Cailyn that one of the real risks was the development of other malignancies at a later time, her response was “well… that’s later!” 

There’s nothing easy or straight forward about making this decision, for either Cailyn or me.  Sure, it’s possible to learn about the documented risks associated with each of the therapies.  But, the likelihood of these side-effects happening is completely unknown and, even more concerning, the list of risks is not complete… Cailyn has experienced unexpected side-effects along her dozen years of intervention… side-effects that impact her today. 

Understanding specifically how Cailyn would be impacted by each treatment option would definitely facilitate effective decision-making, but it would never make it easy for us.  Now, with Cailyn participating in the decision-making process, it will be harder for her.  🙁   I do know that our decision matrix will include the variables of school and social life… as time and opportunity for the “normal” things will figure into our list of pros.  

Here’s to having enough information and insight to make the best decisions.

Balance?

| October 30, 2016

I am so very thankful for all of the support we are receiving from our circle of family and friends.  I can easily state that this support is a life-line for me.  Twelve years in, I am painfully aware of how effectively my resilience has been eroded by the stress I feel managing Cailyn’s health journey.  I first noticed my shaky resilience when I realized a number of years ago that it was harder for me to get to my “happy place”, where I was 100% confident that everything was going to work out beautifully.  It inspired me to visualize resilience as a cup of coffee that gets drained by each and every sip, and only gets filled by conscious efforts to replenish it.  Your notes of encouragement and love add sips of coffee to my cup… I am indescribably thankful.

Finding balance in my life is challenging me at the moment.  As a way of coping with my fear for my daughter and the extremely uncomfortable uncertainty present in all of these medical journeys, I take time each day to recite my blessings.  I’m very aware that some of the blessings for which I’m thankful are a direct result of this crazy journey:  One, I don’t take the important things for granted… I know how precious it is to have “hang time” with my girls, with my family, with my friends.  Two, the “small stuff” doesn’t cause me to sweat as much as I’m sure I would without the perspective I’ve gained along the way.  Three, our lives have been touched by exceptional people and organizations that have selflessly done whatever they could to make our journey easier and to facilitate special moments of joy or peace for us.  Lastly, the last twelve years have provided me many opportunities to strengthen the coping skills I’m going to continue to need. 

I believe these are wonderful blessings to have but I also know that they have been gained at a very real and significant cost.  Undeniably, there have been many times over the last month that my knowledge of our blessings hasn’t been enough to counter-balance my fear and concern.  It is almost impossible to reconcile that the same circumstances that have produced and reinforced our blessings have also brought real “life and death” considerations.  This imbalance inspires me to agree with my Dad when he says that “the price of admission (to these blessings) is too high”! 

Here’s to regaining my balance… 

Coping…

| October 20, 2016

One might think, in the absence of active treatment, that life goes on as normal.  There definitely are normal components to my week that can capture and hold my attention.  Consuming a huge chunk of my energy, though, is a constant and undeniable awareness of this latest addition to Cailyn’s journey.  This awareness colours everything… adding intensity to emotional moments, and seriously limiting my capacity to care about day-to-day considerations.  

I see my pink sticky-note with “5 X 5” written on it everyday (“Turning the Page”).  I love this mantra but I realize that the worries I have today about the outcome of my daughter’s health journey will most definitely matter to me in 5 years.  Obviously, we can’t cross a bridge until we physically get to it, but the enormity of the bridge makes it plainly visible from any direction and at any time.  

Some of the steps we’ve taken towards “the bridge” are:

1.  Sending a “long” email to Cailyn’s oncologist.  Well… “long” refers more to the amount of time it took me to compose than to the actual length of the note.  My intention with the email was to document what I understood from our conversation last Thursday afternoon, and to ask questions, whose answers will hopefully guide us towards good decisions.  Unfortunately, the most important questions don’t have black and white answers…

2.  Beginning to understand what’s involved in participating in a drug trial.  The trial is hosted by Toronto Sick Kids.  As a result, if Cailyn’s tumour has the right “inhibitor”, we’ll be spending a significant amount of time in Toronto.  Cailyn was thrilled to learn that the drug would be taken orally… meaning that she wouldn’t require surgery to put in another port.  She wasn’t thrilled about the amount of time she would be spending in a new and unfamiliar place, and neither of us like the idea that this drug would be taken for an indefinite amount of time.  Thankfully, Cailyn’s New York neuro-surgeon is coming to our aid again.  He is arranging for the required testing to be conducted in New York, the only place where there is enough tumour to actually complete the test.  This speeds up the process of learning if the drug trial is a possibility for Cailyn.  

3. Contacting key support resources at Cailyn’s school and at London Children’s Hospital.  When I picked Cailyn up from school a couple nights ago, I felt that she was a little low.  I asked her “how are you doing, Cailyn?”  She simply said, “I feel like I’m drowning”, and then added “academically”.   I was shocked and truly concerned for her emotional well-being.  She has never over-dramatized anything pertaining to her health and well-being, so her statement really got my attention.  This interaction has sparked emails and phone calls to the individuals who can hopefully help us create academic solutions and who can help her cope with all of the emotions that must be roiling around in her head.  I’m afraid how this kind of feeling could deepen with the advent of treatment. 

“Staying in the moment” has been a real challenge over the last three weeks, with each day presenting a minimum of at least one interaction with her team.  I am sincerely hopeful I have more success over the next three weeks!  

Surreal

| October 14, 2016

Waiting for further insight into the latest growth in Cailyn’s tumour has been a surreal experience.  It feels like we’re in the eye of a storm, waiting for the wind and rain to arrive.  Although the timing of this calm has been appreciated – including a long week-end to celebrate Thanksgiving with family and friends – my awareness that a front with horrendous wind and rain is currently heading our way certainly challenges my ability to enjoy the special moments.

I heard from Cailyn’s oncologist late yesterday afternoon.  She had just finished presenting Cailyn’s case to her peers at the provincial Tumour Board meeting.  As a result, the waiting period will continue.   On one hand, we can celebrate that we have some wiggle room to understand the options and to investigate whether or not Cailyn can participate in a trial of a new drug.  On the other hand, this situation is not unfamiliar to us… before Cailyn started her last 4 years of chemotherapy, we were in the exact same position… there was documented growth and we waited for the next MRI results to confirm that we had to act.  Of course this waiting is horribly difficult.  There is a chance, though, that the progression (documented as a 75%+ increase in the area of two measurements between January and September) can stop.  This balance between waiting and acting is necessary because there are serious risks / ‘quality of life’ realities associated with any treatment option. 

We will also be waiting for Cailyn’s tumour to be tested for a specific mutation.  If it tests positive, she will qualify for the new drug trial mentioned above.  This is something that she would begin as soon as it was organized, without waiting for the next MRI.   

I shared all of my notes with Cailyn and my parents last night.  I could really see Cailyn’s maturity and strength in her reaction.  She definitely took everything seriously but she didn’t appear to be too overwhelmed by the situation.  I appreciate that it would have been tougher for her to manage everything if I had to tell her we were starting treatment next week.  That doesn’t detract from her ability to focus on the potential options; their risks; and, the plan to determine actions after the next scan, approximately 6 weeks from now.

In parallel with my efforts to understand the pros and cons of the options available to Cailyn, I’m going to do my best to stay in the moment… it’s the only “place” we have the opportunity to have fun, experience peace, or make a difference to someone or something.  I appreciate first-hand how challenging a goal this can be…

Yes… it’s all very surreal…   

Shock

| October 4, 2016

Last Thursday I learned that Cailyn’s tumour has grown again… only six months after stopping her weekly chemotherapy.  You would think that my beautiful girl could have had a longer stretch of stability, especially considering that her tumour had been stable for the four years she was on her weekly chemotherapy protocol. 

I am devastated by this news and I am afraid for Cailyn and for how hard it is going to be for her to learn and cope with the growth.  I finally communicated yesterday that there is a change that her doctor is investigating.  Initially, in conversation with her oncologist, we discussed that it might be best to share the news with her once we understood her options for treatment.  So, over the week-end, I acted as normally as I could manage, and could use my cold and cough as an excuse if I appeared pensive or subdued. 

I struggled with the fact that I have always told Cailyn what I knew when I knew it… obviously using terms along the way that she could understand.  Consequently, yesterday I spoke with our child psychologist, with whom we’ve consulted over the last dozen years.  The end result of our conversation was my decision to inform her of this change.

Our conversation took place in the car on the way home from school.  There were some moments that made me question my decision, but by the time we arrived at our destination, we seemed to reach some form of equilibrium.  I’m hopeful we can maintain this state until we learn more, at which time, I anticipate it blowing up before our eyes.

So yes, “shocked” is a great way to describe what I’m feeling.  I’m shocked that there is a change in her tumour, as there were no obvious signs.  I’m shocked that someone who has had to deal with as much as Cailyn has, is going to have to complete another marathon.  I’m shocked that she’s only had a few months of no intervention… I had hoped she was finished with interventions, and if not, at least have years of “normal” before stepping back into a fight. 

Please send your positive energy and prayers to my girl.  I will provide updates as we learn more.