Monday, July 13, 2009

"Cox Knots"

"You know if I am calling you that it is not good news."
The words of our family doctor hung in the air
like the fists of a prize fighter
ready to deliver their painful blow.

Madison had been in the previous week for an MRI
prompted by new pain in her knee.
This was a follow up on an MRI she had done three years ago.
Having these MRI's on various parts of our bodies
is not something that is new to my family.
We have a condition called osteochondroma.
We refer to it as "Cox knots" because it comes from the Cox side of the family.
The results of this new MRI showed suspicious changes in Madison's bone marrow
and lots of edema and swelling.
The doctor told me that the radiologist who read the MRI
was of the opinion that this was different than just an
osteochondroma and pointed very strongly to bone cancer.
There they were.
The words that other people hear about a disease
that happens to other people and other people's children.
Not mine.
Not my vibrant 13 year old daughter.
Shock helped me remain calm during that phone call,
but failed to help me hold back my emotions
when I called my mom a few minutes later.
I locked myself in my bedroom,
and through a flood of tears that I knew I was powerless
to even try to control,
I choked out the words
"Bone Cancer".
My mom who just happened to be in a van
packed with the strong women of my family at the time
cried right along with me.
I heard gasps and shouts of refusal from my grandmother,
my aunt Brenda, my aunt Janet and my cousin Natalie
as my mom relayed my words.
My family is full of prayer warriors so I knew what was
happening as I hung up the phone.
I made another call to the members of my family
who have a great deal of experience with osteochondroma.
They too were all together in one room having lunch.
My Dad, my brother Jeremy, my brother Jason
and my cousin Scott.
All of us bear the scars from having our own Cox knots removed,
but I wanted to know if any of them had ever had
a doctor refer them to an oncologist because of suspected bone cancer.
None of them had.
One more phone call to my cousin Carrie
who has the most experience with this issue
calmed my fears a bit as she relayed a few stories
of doctors being overzealous with this condition.
With looming disbelief and a fear that I had never known before,
I spent the next few hours at my computer
researching osteosarcoma and scaring myself to death!.
David and I made the decision to keep this information
from Madison over the 4th of July weekend.
She is a hand wringer of a child and worries herself into
hysterics over health issues and personal safety,
so we knew that she would have a hard time wrapping her head
around this enough to function normally.
We spent the weekend stealing glances at eachother whenever
Madison would complain that her knee hurt.
It was hard to look at her at all without wanting to
burst into tears and take her into our arms to protect her
from even the thought of having this kind of fight on her hands.
Our doctor supported our decision to keep this from Madison over the weekend
but advised us to tell her before we met with the specialist.
We decided to tell her the day of her appointment
which was this past Tuesday.
We simply told her that anytime something grows and changes in
our bodies, we need to make sure there are no serious
issues surrounding it.
And that was good enough for her.
She didn't ask any questions.
On Tuesday, we met with the pediatric orthopedic surgeon
who took new x-rays and informed us that what she had was
a very large osteochondroma on her thigh that needed to be removed.
They found two others behind her knee
that we may or may not have removed
pending another scan in a few weeks.
I let him know that we were told that the radiologist had suspected
osteosarcoma (bone cancer) based on the changes in the MRI,
and he assured me that this was not the case!
David and I audibly exhaled for the first time in a week!
We were so relieved!
As we were leaving Seattle Children's Hospital,
Madison was expressing alot of disappointment over her upcoming surgery.
Having never heard the word cancer,
she still did not know the weight that had been lifted.
We explained to her what we had been told,
who all was carrying this burden with us,
how much we had prayed,
and how different the outcome could have been.
She was amazed, not only that we had kept this from her
but also at the outpouring of love she felt as she heard stories
of prayers and support on her behalf
and of the depth of concern from family members that
she thought would certainly be unaffected by her distant life
because she'd only met them
a few times.
For the next few days she felt enveloped in a love that was deeper
than she had thought.
It was evident on her usually dispassionate face.
We saw more smiles and less insecurity,
more certainty that she is supported,
held up
and sustained
by a myriad of people
that she never knew felt as deeply as they do.
What a gift coming out of such
ambiguous cicrumstances!
Madison will have surgery on September 2nd
to remove a large bone tumor
that we refer to as a Cox Knot.
It is a condition passed down on my side of the family.
Most of us wear our scars as a badge of honor
and a sort of right of passage.
It is common to compare scars and stories at family gatherings
and to question whether new cox knots have cropped up.
So far, Madison is the only one of my four
that has this condition.
I have had three removed myself.
One from my leg and two from my right arm.
My youngest brother Jeremy and I have
matching scars on our shoulders.
Jason has several scars, my Dad has a few and Scott and Carrie
have a bunch as well.
Just like blue eyes and bubble butts,
this is just another genetic thing that makes us related to eachother,
but it is the free flowing love and concern
when one of us was threatened
that makes us belong to eachother.


Brandi Tantillo said...

As I read this and cried to myself I exhaled with you and your family. So glad your story has a happy ending :)

Sallie said...

Praying for your sweet family! We serve a great and mighty God that is already preparing the hands of those surgeons. Thank you for sharing your journey with us.

My husband has a shirt that he wears proudly having two HUGE scars on both legs from an accident last reads "Scars are tattoos with better stories" that needs to be the Cox Knot motto!

Sandi Henderson said...

Oh my dear favorite bloggy soul sister-

I am constantly amazed at how uplifted I become when I visit here. It seams to always have exactly what I need. I have suffered from a bad amount of self pity today and this has completely cured me.

How thankful I am for your families good fortune on the outcome of this. I can't even begin to imagine what you have been through in the wait.

Thank you again for writing about your family, I just love reading about your adventures.


mackey said...

I am so thankful that she is ok. I can not imagine the fear & uncertainty in your hearts.
Glad she will being just going in to get a Cox knot removed=] I bet you are gaving her some extra big hugs!

Cheryl said...

The tears have brimmed on the edges of my lids. I'm so thankful this wasn't cancer. So, so, thankful.

Heidi said...

Becca (and fam) I cannot tel you what I felt while reading this, because I cannot even describe the feelings. tears & smiles both occured though. I am VERY happy to hear that Madison will be fine.
VERY, VERY happy. <3 you guys!