A few weeks ago I was asked if I would be interested in speaking about Evie, and our family's journey at a Neuro Science Conference being held at SickKids. Apparently there was going to be a panel on Optic Pathway Tumours, and in addition to the Surgeon, Ophthamologist and NeuroOnc RN speaking, they wanted to add a patient perspective....and thought I might be a good fit. So, that's what I did this morning. I thought I'd share my presentation here.
NEUROSCIENCE CONFERENCE
THE HOSPITAL FOR SICK CHILDREN
TORONTO, ON
TUESDAY JANUARY 26, 2016
My name is Kristine,
and I’m here today with my husband Paul.
We were asked to participate on this panel to share a bit about our
daughter Evie. Anyone that has met her
can tell you she is not shy, but instead of bringing her today, I asked her to
help me make this video. I’m hoping this
will give you an idea of who she is, beyond her medical charts, and also give you some insights into the way in
which my 5 year old makes sense of her cancer diagnosis.
VIDEO OF EVIE'S STORY
I have told
Evie's story a lot. Over and over again
really since the day she was diagnosed. I
told it when I had to call friends and family members and explain to them what
was happening. I've told it to various doctors, nurses and medical
professionals who all want to hear it from my perspective while piecing
together her diagnosis. I've told it to
strangers, who have become friends - families I have met in clinic - and
as I recited it, I watched as they compared notes in their heads to their own
experiences, their own story.
For the record,
I had a perfectly normal pregnancy. Evie
was born, at home, on purpose, surrounded by family and midwives. The first six
months can be described as perfectly normal - we never had any reason to
suspect something might be going on.
It was on
October 28, at six and a half months old, my husband Paul called me to come and
look at her eyes, which he said were shaking.
24 hours later, and after spending 12hours in the ER here at SickKids,
we found ourselves being admitted to the 8th floor, and were told “they
had found something”. In that moment I
felt instant relief….hadn’t we been there so they could tell us what was going
on, so they could find something? I was
so naïve, I had no idea. In the days
that followed, we learned that something meant tumour, and that tumour meant
cancer, and that cancer meant chemotherapy.
I also remember these words specifically, and these words are important,
because they are words that I held on to for the next few years:
Benign
Slow growing
Non surgical
Non life
threatening
Our goal is to
keep her from losing vision
This is how Evie’s
tumour, her Hypothalamic Optic Glioma – Optic Pathway Tumour – was described to
us. These words held a lot of stock, and
I knew right there, this is bad, but it’s not the worst of the worst. We were thankful for that.
Evie began
treatment, and we were introduced to the various other clinics that would also
be required to follow Evie: in particular Endocrinology as her tumour was near
her hypothalamus, and Ophthamology because it was along her optic nerve. She would also be getting MRIs every 3
months. In total, Evie is now seen by 5
clinics here at SickKids, and 2 at Holland Bloorview. So like most families, we have been balancing
appointments from day one.
Treatment wise, that
first protocol, Carboplatin + Vincristine, only lasted about 15 weeks before we
had to stop due to a suspected allergic reaction. From there, Evie started Vinblastine, and
then moved on to Avastin – both protocols were cut short when they failed to
stop her tumour from growing. At this
point, Evie had been on treatment continuously for almost two years, and it was
decided that a short hiatus from chemotherapy might actually help to stimulate
a positive reaction. So we agreed that
we would give chemo a break for a few months.
It was during
this brief hiatus that Evie began to get sleepy. It happened gradually over about two weeks –
she just seemed to be really tired, and basically ever day was sleeping
more. We talked to her team, we had her
checked out, and couldn’t find anything.
By the end of the second week of sleepiness, we were getting quite
concerned. I had nothing new to report
to her team, but when she hit the 18hour mark of sleeping, waking only to use
the bathroom, we called rank and hauled her back into the ER. It was simultaneously comforting and
discouraging to see her oncologist there, agreeing that something was wrong.
It turned out
that two things were happening: Evies tumour continued to grow, and this growth
was blocking off the natural passageway for CSF to drain. Evie spent two weeks in hospital, had a shunt
inserted, and then a tumour resection. Those
two weeks in hospital were probably the toughest we’ve had. This was also the first time I became confused
by the words I had first clung to: her slow growing, non surgical, and non life
threatening tumour had just become emergent, had grown fairly fast it seemed,
was now surgical, and felt pretty life threatening in that moment.
I often describe
being an inpatient as being in the SickKids Vortex. You’re in the middle and your whole world is
spinning around you, with very little, if any control. You know there is a
whole world out there somewhere, but it is completely irrelevant at this
point. You’re just holding on, as best
you can, hoping to make it out to the other side. When you’re here, under such circumstances,
your life almost stands still….and that in itself can be a difficult thing as a
parent, when you also have the pressures of work, bills, and other children – of
everything your life was before, in addition to this huge thing that your life
has become.
Before being
discharged, Evie started her 4th protocol. Though higher in toxicity, TPCV did shrink
her tumour, and was the first protocol that Evie was able to fully
complete. It was however during this time
that we discovered that Evie had lost vision in her right eye. This was the
next instance of me as a parent holding onto words I had been told: the goal of her keeping her vision was
slipping away. Vision loss is one of the
things I struggle with, though I am reassured by her doctors, and by her, that
the way in which she sees the world is simply her normal, it is so difficult
for me – I find eye appointments to be some of the most challenging – they are
a reminder of what is being taken from her.
I often leave feeling defeated.
Sorry Dr. Reginald…
Last May, after
almost a year and a half off treatment Evie started a Phase 1 trial. A few months prior she suffered a shunt
malfunction, and then an MRI showed more tumour growth, prompting the search
for the next step in her treatment. This
is where we are now in her journey. It’s
hard for me to say how it’s going, but I think it’s fair to say we’re not yet
seeing the results I was hoping we would. I’ve been pretty honest with my team
about my concerns, and expectations, but, as one oncologist said to us years
ago…this isn’t easy peasy medicine…fair enough.
Evie currently takes
her chemo every morning at home, along with daily aspirin and synthroid. Every three months she gets a lupron
injection. Her vision has remained
stable, as she explained, one good looker, one bad looker. We feel fairly lucky with Evie a lot of the
time. She is happy, and
understanding. She genuinely enjoys coming
to the hospital, though admittedly doesn’t love every test she needs to endure.
She believes that she is coming to visit and play as much as she is to be
assessed. Watching her interact with her
team is hilarious to me – I’m not even sure she needs me half the time. She is cooperative, and that alone from a
five year old helps a lot. As she gets
bigger, she understands more and is able to tell us more – which also means I
need to tell her more. I’m expecting to
have a few difficult conversations with her.
Even though we’re
not there yet, I’ve realized that even when you’re done treatment, you’re not
really done – there are “aftershocks”. Complications, side effects. Even yesterday I got a call from her
therapist confirming assessment results telling me that Evie scores are far
below average. So these are the kind of
things that I think make any diagnosis harder on a family. The initial diagnosis sucks. And then, very often, it just doesn’t stop
there. That sounds super pessimistic,
and I don’t mean it to, I mean it more realistically – as a parent you need to
be prepared for things to change a lot, all the time – but at the same time, it’s
not really anything you can be prepared for.
I watched those words fade – and the reality of that was hard. I completely understand that she doesn’t have
an aggressive form of cancer….but this slow growing tumour….it’s been slow and
steady, and that doesn’t feel great.
For now, we keep
on keeping on. A lot of this, though I
do stand by the fact that it sucks, has also been normalized. I know that there is little we can do to stop
her eyes from deteriorating right now, so though they make me nervous, I’m
happy with the words “no change”. I also
like to think that Evie’s oncology team might be as frustrated as I am
sometimes – they’re just more professional about it. I think that alone, is encouraging to us
because she’s proven to be a challenge – and I’ve noticed that the doctors here
seem to step up to challenges. Though I
wonder how many kids get to plan E, we’ve never been told they’re out of
options.
Evie has grown
up here, right in front of us. Not quite
what we imagined her life would be, but it’s all about what is her normal…and
this is it.
