What a week.
Many of you know
what’s going on in our life and even a greater number have no idea.
The short and sweet
of it is that our dear, precious, 3.5 year-old son has cancer.
So so so so scary.
But if you stop at
that sentence you will miss the miraculous and amazing journey that
we have been on. We have a God that is unbelievably graceful,
merciful, and loving. His love has been expressed in a myriad of
ways: by our deepest friends and family to those that we haven’t
known for more than a few hours. It’s a Christian cliché to say
“God is good in all things,” so instead I will say that we have
simply been loved.
To the story:
On May 25th
was the first time we realized Isaac started getting a little chubby.
We wrote this off as him packing on a few pounds right before a
growth spurt and kept churning through life. He was acting normal,
eating a bit more, and being his goofy and sarcastic self. With
everyone commenting on it and a major push from grandparents we
finally got him checked out. On the 19th of June he went
and saw our family physician who agreed something wasn’t right and
ordered full blood and urine analysis. The initial thought was that
it was Cushing’s Syndrome, but most of us cast that aside as it’s
so rare in children. Throughout the whole week his tests kept coming
back clean and we finally started dreading the cortisol test which
would prove or disprove the Cushing’s. This last Monday (25th)
we got the results back on his cortisol levels and they were through
the roof. We had an appointment scheduled at 3:30 where we learned
this. The results had come in around noon and our family physician
(big shout out to Dr. Houts!) had been on the phone all afternoon
with a pediatric endocrinologist and a pediatric oncologist up at
Randall’s Children’s Hospital. Hearing we were visiting an
oncology office felt likea punch in the stomach, but we had an
appointment at 10:30 the next morning, and it’s probably not
cancer, right?
We drove up to
Randall’s Tuesday morning knowing it was probably a tumor causing
the creation of this cortisol. (Side-note, there has been 2 cases of
Cushing’s at Doernbecher and Randall’s in the last 20 years.)
But what the doctor told us was absolutely crushing. Hearing the big
“C” word come out of a doctor’s mouth about their child is
something that I don’t wish on any parent. It was prefaced with
the statement that the tumor could be completely benign, but we were
shocked. Adrenal Cortical Carcinoma (ACC). I knew enough to be
dangerous and was scared, but consistently was reassured that there’s
a good chance it’s benign. More and more talking and then we were
headed back home with an MRI scheduled for 10:15 the next day.
You know how they
always tell you to not search online? Yeah…wish I’d obeyed. I
threw up and wept uncontrollably in the bathroom at the Silverton
Library after I read about ACC. I’m not ashamed. I was frozen in
fear that I had a short time left with my son. The general rule is
that I function better with the information and it helps us ask
questions. Melissa functions better without all the information or
she’d lock up. Without the extra info she is capable of just being
present with the children which is what they needed. OH HOW I ADORE
MY WIFE. She was our rock. She didn’t ask and didn’t want to
know.
We tucked the kids
in bed and sent out mass texts at 8:45 pm to gather people at 9:30 in
our living room for prayer. At 9:30 we had 20 people gathered who
gave an hour of their time in tears and supplication before our
heavenly Father and countless others joining from their own homes.
Wednesday morning
was rough. No food for a 3 ½ year old who has been scarfing like a
teenager is tough, but he was a trooper. We got the MRI and drove
home anxiously awaiting the results to be read. The phone call came
at 3 pm and we held our breath. “There is a tumor, but it’s on
the kidney, not the adrenal gland like we thought!” I nearly
“whooped” with joy. Throughout the conversation we learned about
Wilm’s Tumors and how they’re cancerous but the pathway to
beating them is known. My wife and I ended that phone call in two
completely different places. I was on Cloud 9 as I knew where this
could’ve gone if it was on the adrenal, while she was left to deal
with processing that her baby had cancer, instead of a benign tumor.
The next step was a CT Scan in the lungs as that’s where this type
of tumor tends to metastasize to and to meet the surgeon.
Thursday morning and
we’re back up to Randall’s. We meet with the surgeon, schedule a
surgery for next Tuesday at 7:30 am, and then haul butt down to get
CT scan with a boy who for the second morning in a row hasn’t been
able to eat breakfast. Tests get done and we drive south. As we’re
pulling into Silverton we get the call that there’s no signs of the
cancer spreading to his lungs. HALLELUJAH, PRAISE THE LORD!!!
So here I sit. My
son has cancer and God has done miraculous work. There are mentions
in literature of Wilm’s Tumors causing Cushing’s, but it’s
absolutely unheard of. I choose to believe that we prayed and God
listened. That he moved this deadly tumor from the adrenal gland
over a few centimeters and sat it on the kidney. Another important
note is that the Cushing’s was blessing in surprise. Normally
Wilm’s Tumors aren’t found until they’re huge and palpable by a
parent washing a kid in a bathtub or wrestling. Isaac’s is 4 cm
long and you can’t feel it if you try. We caught this thing
incredibly early due to the expression of cortisol and the changes in
his body.
Special
thanks to our new True Light family, to family friends and cousins
who are nurses allowing us to pester them with questions, to bible
study and college friends, and to the Fab 5. Your love has been felt
to the point of tears.
Leah has been
strong. She has an amazing ability of insight and understanding for
a six year old. Just ask Ms. Nelson. But she has rolled with it and
trusted with faith like a child. James has been a blessing in his
own right. In just the last two weeks we’ve noticed him not
needing to nurse near as much. It was a source of frustration to
Melissa that has turned into a freedom with the place we’re in.
Not enough has been
said of both of our parents and families. These people have wept,
prayed, and given so much. They have allowed us to not have to worry
about the day to day of our home and have been there for our endless
tears and sorrows. Jeff, Nancy, Karen, and Brian, THANK YOU!
My wife is
continually amazing me. She just left to get groceries at 8:30 at
night and had to pretend to the whole world that everything is fine.
She came home broken and through conversations and sorrow came to
realize that Abraham was given a ram in the place of his son Isaac,
and we were given a sacrificial kidney (they will pull his whole left
kidney to remove the tumor) in the place of our Isaac. Haha! How I
love this woman! She has named the tumor “Ram.”
I haven’t
mentioned Isaac yet as it is heartbreaking to me, but it has to be
said. This kid has no real idea of what’s going on. The kid is
being such a brave boy. This would’ve completely debilitated me
and yet the kid isn’t even fazed. He runs like there’s no
tomorrow, constantly wants to be wrestled, and is thoroughly enjoying
all the new toys that he has been bribed with. This paragraph is too
short. The kid is a Superhero.
You can continue to
pray and bless us with your love. Next Tuesday at 7:30 our son will
have surgery under the hands of some very amazing people. It will be
around a week’s stay in the hospital as he recovers and the tumor
gets sent to the lab for analysis. From there we learn whether or
not we’ll have to go through the darkness of chemotherapy. We are
praying that Isaac has been spared from that and we’d ask you to
join us in that prayer.
Songs that have
comforted us during these times:
Twenty Three by
Aaron Strumpel
Build My Life by
Passion
I Lift my Eyes up,
to the Mountains by someone that I can’t find
To God Alone by
Aaron Shust
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