By Max Peacock
Max Peacock shares how his mother's MPN diagnosis inspired his annual Maxwell Hitswell fundraising tournament, and helped him discover the healing, strengthening power of community. The Canadian MPN Research Foundation is incredibly grateful for his fundraising efforts!
"My connection to MPNs is through my Mother who was diagnosed with essential
thrombocytosis in the winter of 2012.
The diagnosis came shortly after Christmas that year when my Mother began
experiencing ocular migraines. A difficult period followed in which we could not
concretely understand what my mother had to what treatment path she would have to
go down. Words like Myeloproliferative Neoplasm were alien to my whole family, and I
was perhaps too young to be prepared to deal with dinner table conversations about
how my Mom’s cancer was going to potentially mutate.
There was also the fear that what was affecting my mother was genetic. Waiting to hear
back about the bloodwork my brother and I had done in the wake of my mother’s
diagnosis was a tense time.
There have been many moments in this journey that have been hard to wrangle with.
Certainly there is a great degree of difficulty even sharing or trying to explain to people
what exactly is going on. I remember skipping school for a week but not wanting to tell
my friends why.
Though our whole family dealt with the impact of the disease, it is hard not to focus on
my Mother’s strength through it all as she sought to adapt to her new symptoms,
treatments, and medications. She has never let her diagnosis get in the way of doing
what she loved: continuing to stay active, learn, and work despite the challenges.
It was the unique challenges of COVID that I think brought this tournament about. As
was the case for many immunocompromised people my mother was significantly more
“at risk” than many other people. It was another layer of complication to a disease that
had already affected her life so much.
COVID made it important for me to explain to people that my mother was battling with
ET. Being vocal about it to others also made me realize that I had the power to make a
difference using my community.
The first tournament was not exactly a smashing success. It was a “birthday game”
planned in 2 days and we only had 6 players on each team. 12 participants only raised
$50. A total that I matched to reach my goal of $100.
But based on the fun that people had at that first tournament we knew that given a
year's runway we could make something out of it.
In its second year we set the bar far more ambitiously hoping for $500. I hand tracked
each donation made, tallying them all together. We finally had enough people involved
to play a round robin and a championship game.
Every year since, I have put the donation bar at a goal that I feel is incredibly lofty and
every year the generosity of my peers floors me. It’s become an event that my friends
mark on the calendar often forgetting that it coincides with my birthday instead asking
me as early as February “when I’m having the hitswell this year”. We’ve had participants
fly in from as far away as Vancouver, we’ve taught 16 people to play softball, and we’ve
raised more money that I could have ever imagined.
This year marks the fifth year of the tournament and I have had so much interest from
my friends in 2 different cities that we will be playing 2 separate tournaments.
Roommates, friends, and co-workers volunteering have been the backbone of the
tournament each year. Generosity has poured in from everywhere, although some
participants could not explain exactly what essential thrombocytosis is they know that
their donation is for “Max’s Mom” and to many that’s reason enough.
The response around the Hitswell has taught me more than anything about the power of
community. I relied on my community to do good and in turn created a community that
is now actively bringing in others.
To others young people with a parent or a loved one living with an MPN I would give 3
key pieces of advice
1. Be vocal about what is happening, and how it is affecting you. Coming to terms
with what is happening and finding the support you need is the most important
thing. These sorts of things can shake your world in a way that even I still may
not fully understand. Do not be afraid to call on your friends when you need
them, and to share how you are being affected. It took me longer than it should
have to understand that despite not being the one diagnosed with the MPN that I
too was greatly affected by it.
2. Continue to do the things that you love. Sometimes the process of a family
learning to live with something like this can feel like it takes away the time that
you previously had for what you loved. Whether it be an organized sport, an art
form, or a hobby, whatever you love to do should remain a priority for you. It can
be incredibly hard to assert yourself as a young person but being able to say “I
would like to continue doing x,y,z despite how I am feeling” is important. The
hitswell would not have come about if I had not been willing to say “I want to play
softball on my Birthday”. There were moments in my life where I would not have
been willing or able to say something as simple as that.
3. If you give to your community, it will give back. When I started fundraising for
MPN research I did not think that anyone would care about rare blood cancers. I
was entirely wrong. The minimum cost of entry for the Hitswell is $10, our
average donation in our fifth year was $50. It can be difficult to build momentum,
but once you have it the generosity of the people around you will blow you away."
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