Reach Out April 2019

Personal Stories
Caleb with his family at the beach
They told us the name of
the tumour. It was a subependymal
giant cell astrocytoma. I remember
asking them to spell it for me so
I could add it to our long list of
technical terms. This is when I
first heard of TSC. They said to us:
“There’s a rare genetic disorder
that Caleb definitely doesn’t
have that this tumour is
associated with.”
sclerosis and he laughed as he tried to say it, so we broke it into
syllables. I explained that it would mean lots of doctors and lots of
tests and that was why he has all the marks on his skin and why he
got his brain tumour. He’s pretty proud of his scars already. He’s
been really fine with it. We told his siblings and they’ve reminded
us how resilient kids can be.
We asked what happens next and were told they didn’t know
a lot about TSC and to just continue as normal. Thankfully, I was
already familiar with the surveillance guidelines because of TSA’s
informative website. When I first went over the checklist of what
tests Caleb needed, it was the first time I felt I had a little bit of
control over what was happening. We knew we needed to get an MRI
of Caleb’s brain and kidneys and have other tests. I knew I had to be
Caleb’s advocate. It did get exhausting at times constantly having to
push for things to happen.
We were referred to a great paediatrician, but she said: “You’re
lucky he’s so mildly affected”. I agree in some ways we are lucky,
but discovering a brain tumour three weeks after open heart
surgery felt far from lucky.
I do feel I have to be constantly vigilant and have to keep gently
pushing for things such as a script for topical rapamycin. The
resources and research papers on TSA’s website have been so useful
for these conversations. I don’t want to be that nagging person,
but I do have to keep advocating for what is best for Caleb. We are
getting into the routine of all the tests that Caleb needs to have. It
is our new reality.
Taking on the coordination of Caleb’s care was a big job. When
I told my Mum about tuberous sclerosis she was relieved, saying:
“So that means someone else will run this now. You won’t need
to keep doing what you have been doing for him.” The reality, we
know now, is that coordinating Caleb’s health care still falls to
me. Doctors are extremely busy people caring for many patients.
Patience and educating myself more and more about TSC has
helped through the frustrating times when we have had to ask for
certain tests to be done or chase up referrals.
Caleb is a talented gymnast and member of the junior
development squad at our local gymnastics centre training nine
hours per week. He had a long time off training after his heart and
then brain surgery. On his first day back at training I cried and
cried, possibly the hardest I have cried through this whole thing.
I think I was a bit numb and removed at other times. But when I
saw him running down and getting on the rings – it was amazing.
I never cease to be amazed at what he can do with all that he has
been through.
As a family, we enjoy taking our boat out and fishing and
camping. Everyone said to us that after the year we had we should
plan a holiday. We did go away together camping over summer but
not too far from a hospital!
There’s a big journey ahead, but we will deal with each thing
as it comes. Thinking about everything all in one go is too much.
My emotions sometimes catch me unawares, but at other times I
can talk about TSC without getting emotional. Our family made
donations to TSA last Christmas and it was the first time my
husband and I felt like we were doing something positive. It was a
lovely way to end the year and we look forward to doing this gift
giving each year with our family at Christmas.
We have written at home: “You never know how strong you
are until being strong is the only choice you have”. TSC is our new
normal now. It’s our new reality and we will be OK.
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