"June
17th, 2016 my son Evan was diagnosed with cancer at the age of 4. It was the
lowest point in our lives and the first few months of chemotherapy were very
hard on his body for various reasons. After over three years of
literal blood, sweat and tears we have arrived to today. I'm proud to announce
that Evan got to ring the bell this afternoon at the clinic signaling the end
of his IV based chemos. We still have a few weeks of oral meds left, but this
is a huge milestone for us.
Throughout it all he's
been a warrior, rarely complaining and doing whatever has been asked. There's
too many people to thank individually, but from the bottom of my heart thank
you to my family, friends, volunteers, medical team and prayer groups for giving
us the strength to fight through the tough times to reach today."
As you can see the text
above has been quoted. Instead of trying
to write a fancy intro to today's blog I figured recreating the wheel might not
be the best approach; so I have referenced my own post on Facebook from Friday
afternoon. The whole day was a bit
surreal and is still a blur. I
had been dreaming of this day for months, if not years, and had played in my
head all sorts of scenarios and speeches I considered giving. When the time came though I found the words
weren't so easy and Cristy and I were prisoners of the moment. To add to that I've had writer's block for
this blog post in particular.
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| Evan received a certificate marking completion |
I clumsily thanked the
nurses and staff, including two of them that Cristy and I grew close with when
Evan was in the hospital. In hindsight I
wish I had said more and made clear to the entire medical family how much their
help on this journey has meant to us.
They saved my son's life and for that I will be forever grateful to
them. Cristy and I don't talk about it
much, but there was a time early on when Evan was deathly ill. He bounced back and forth between the cancer
ward and the PICU on a couple of occasions.
The diagnosis of cancer and all the unknowns that came with it consumed
us and sometimes our imaginations caused us to plan for the worst. It was the strength of the hospital staff and
our friends and family that helped us keep our focus. Only after we got our feet back under us and
took inventory of the situation were we able to start creating a new
environment of normalcy for Evan and Nolan.
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| Mama spending time with her boys |
As you notice I didn't
mention Cristy and I in the normalcy category at this point. Because she and I were splitting time at the
hospital it was difficult for us to find time as a couple. Our daily conversations were usually hand-off
talks to catch each other up on Evan and Nolan.
Even once we returned home from the hospital we had to administer shots
in the morning, all sorts of drugs to dole out at certain times throughout the
day and then more shots, followed by feeding bags via tube in the evening. If we had the energy to stay awake in the
evening it usually consisted of watching TV on the couch. Fortunately as Evan's health began to
stabilize it allowed for more opportunities for us to spend time together. Our first date night after Evan was diagnosed
wasn't until September 10th, 2017 (I had to look it up). Naturally we had several offers from people
to watch the boys, but we didn't want to burden anyone with the routine that
was our "normal" at that time.
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| Typical day at the clinic |
Because of Evan's weakened
immune system and lack of mobility we held him from beginning kindergarten
during his first year at Hayes Elementary.
Evan's teacher at the time, Mrs. Young, encouraged us to let go of our
concerns and trust her and the staff to care for our son. 2016 was the worst year of my life, without
question, but this hardship and new perspective allowed us to see how good
people can be and I will remember 2017 as the best year of my life.
In January the family and
I celebrated New Year's Eve / Day by ourselves at home. I'll always remember the look on the kid's
faces as I did my best to burn down the woods behind our house with fireworks. Mrs. Young and team held up their end of the
bargain and Evan had a wonderful first year at school despite the many
challenges he presented logistically. As
Evan continued to improve we were able to participate more in the cancer
community with amazing organizations such as Camp Sunshine, Make-A-Wish, Cure and Rally (to name a few). The highlight
of 2017 was our trip to Disney compliments of Make-A-Wish and Give Kids the
World. By the time 2017 ended my spirit
was renewed, full of gratitude for all the wonderful people who had provided us
hope and inspiration to keep fighting.
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| The boys attending their first concert |
While 2017 was great, 2018
wasn't far behind. We were able to
continue growing, moving forward and strengthening our bonds as a family. Lighthouse Family Retreat offered us the
opportunity to spend time at the beach together and meet many inspiring people,
both cancer families and volunteers who only wanted us to enjoy our time
there. Cristy and I found more time for
each other, the kids were excelling in school academically and socially, and we
did the best we could to balance time with family and friends. I suspect finding time for friends and family
is a challenge for most people, especially if you have kids that participate in
extracurricular activities.
You may be wondering, why
the stroll down memory lane? Gratitude
mainly, but also to point out the impact this disease has had on our lives. There will always be the fear of relapse in
the back of our minds. The first time
Evan gets a fever it will be hard for me not to rush him to the hospital or
call the emergency number for the on-call doctor. Despite the hysteria and paranoia leukemia has caused I don't know that I would
change anything. Evan, Nolan, Cristy and
I are all stronger for having gone through this. All we can do now is hope that his bone
marrow rebounds long-term and follow any medical instructions from his
immunologist.
Evan has shown amazing
strength. He rarely complains about
pains, medications, procedures or surgeries.
His biggest fear is usually the initial syringe poke. His personality is very much like
Cristy's. Very sober and focused
academically, he definitely likes to follow the rules and always threatens to
call the cops on me for minor moving violations (like speeding). He thinks of others often and has a quirky
sense of humor. I try to make him laugh
daily with some non-sensical joke and I hope he allows himself the opportunity
to be a kid more often now. Less
guarded, more carefree. His interests
change monthly, but I'm confident he'll be successful in anything that allows
him to apply focus to his craft.
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| Evan having fun with his cousin Lily |
Nolan too has been a
trooper throughout as well. Cristy and I
often joke that he has my personality.
His adaptability and smile are what stand out to me. He has had to sacrifice quite a bit during
our journey. Because our focus had been
on Evan for PT sessions, drugs, appointments, etc. Nolan sometimes has had to
be patient, which isn't a strong suit of his, while waiting for attention or
being handed-off to another caretaker.
Where he does excel is going with the flow, smiling often and happily
accepting whatever situation he's faced with.
He's expressed interest in being a musician or wrestler and I have no
doubt he'd be successful with either (after some voice lessons). Cristy and I are now putting more effort in
helping develop his focus and trying to improve his reading and math
acumen.
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| Happy 5th birthday Nolan! |
Where would I be in this
journey without Cristy? She has been so
consistent, so focused on her goal, that it is inspiring. She always puts other's needs before her own. On the rare occasion she gets overwhelmed
she'll take a deep breath, collect her thoughts and then put a new plan of
action in place for attaining her goal.
She is so good at tackling the day-to-day chaos at our house without
fanfare. Things just move like
clock-work because she's behind the scenes pulling on the right levers and
hitting all the right buttons. I'd be in
disarray without her keeping us all organized.
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| Cristy recovering after a typical day |
From a health perspective
Evan will begin seeing an immunologist at Egleston, in addition to monthly
blood draws for blood counts. Evan's
primary doctor wants to wait at least a month to check his IGG counts before
deciding on a date for his port removal.
Assuming his counts don't pick up he'd be on IVIG for the foreseeable
future. His bones should strengthen once
he's completely off oral chemo. This is
good news since he is a typical boy and loves rough housing with Nolan and
I.
This isn't the last blog
entry, but they'll likely continue to be infrequent unless something
significant happens. It's worth stating
again, thank you to everyone who has inspired us along the way. There have been dark days, but the happy
memories far outweigh our struggles. We
aspire to continue helping others and want to be a source of hope for other
cancer families.
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| We're almost to the finish line |
