For a little over three years, my heart has been heavy, my mind has been consumed, and my computer bookmark folder has been filled with research.
Not only was I looking for answers, treatments and advice to help Chad through his journey, but I was also looking for information about IT’s ability to invade our children’s lives. Early on, we were told our daughters would have a 50/50 chance of developing the same type of tumor as Chad. This thought brought Chad & I to our knees many, many times.
Most primary brain tumors (meaning the tumor started in the brain, and wasn’t a metastasis from another type of cancer somewhere in the body) are formed from two different types of cells; astrocytes and oligodendrocytes. These cells, when healthy, are vital parts of the brain’s tissue. Sometimes, and for unknown reasons, these cells mutate and go bad.
Each time Chad had surgery, tissue was sent to biopsy because his tumor was so large and didn’t behave they way his medical team anticipated.
With the very first biopsy, we were told it was a mid-to-high grade mixed glioma – oligoastrocytoma, with a higher astrocytic component. Which meant IT was likely going to morph into a glioblastoma (GBM). GBMs are one of the most prevalent malignant brain tumors; highly aggressive and hard to treat. We were scared to death.
After further investigation of this same sample by Johns Hopkins, we were told there was no astrocytic component. It was a well defined oligodendroglioma. Which was better news. These tumors usually respond better to treatment than astrocytomas, especially with the 1p 19q chromosome deletion (which Chad possessed).
But how can you reconcile two vastly different pathology results from the same tissue?
We always questioned it, quietly to ourselves and obnoxiously loud to Chad’s doctors.
Our neurosurgeon strongly felt that Chad’s tumor was mixed, even though the pathology didn’t confirm his suspicions. He was confident that IT’s behavior was proof of an astrocytic component – he thought the tumor had two separate supporting cells, and the astrocytes (GBM) were invading and taking over the tumor all together.
This terrified us both.
What would this mean for our sweet, innocent, precious girls?
We had, unknowingly, given life to these two amazing little people that may be hit with a genetic disease beyond anyone’s control.
We had been small-talking about having another baby shortly before Chad was diagnosed; but very quickly ended those talks when we were told our children could suffer from IT. He was very matter-of-fact: he could not, would not, bring another child into our lives after knowing IT could, eventually, take over.
Every time my girls have a headache, I want to rush them over for an MRI.
Which I know it’s a little over zealous.
If IT is going to show up in their lives, there is little I can do about it.
Chad reminded me that we could only be prepared…
When Chad decided to end all treatment on June 29, 2010, I supported him.
But I desperately wanted another biopsy; and I wanted multiple opinions on the pathology results.
He declined, but did remind me that he wanted his brain to go to science; a decision he made when this journey first began.
He wanted me to wait until his death to get a biopsy – and then he wanted the medical community to use his tumor for research.
I carried out those wishes.
Chad received a brain autopsy at Duke the same day he passed away.
After talking with the team there, I understood it would take 60-90 days to receive the pathology findings.
I have had a knot in my stomach for many reasons since the day he died; but also because I knew I would soon know if IT could take me (and our daughters) hostage for the rest of our lives.
Ninety days came and went.
After a call to the appropriate people and clearing up a few clerical errors, I received the report Saturday.
When I reached into the mailbox and saw the Duke logo on the envelope, my hands started shaking.
The girls and I were outside, enjoying the beautiful weather.
I walked closer to the house, ripping the envelope as fast as I could.
As I read the words, hot tears rolled down my cheeks.
The first page was a condolence and some contact information. I scanned.
I shuffled to the second page and the tears fell larger, quicker.
Tears. And tears. And tears.
Mixed with overwhelming shortness of breath.
Mixed with relief and laughter.
NOT a glioblastoma.
While it’s possible for this type of cancer to be hereditary, it’s extremely rare.
IT, at its devestating size and at end stage, behaved more like a GBM.
But it was not. (!!!)
You cannot imagine the blessedness, alleviation and absolute relief I feel.
I’m sure there will always be a small part of me that will always wonder if the girls will ever be affected.
Right now, though, I feel a calming hand on my shoulder, reassuring me that we will be okay.
We are okay.