The Milestones We Never Wanted

Having children is all about milestones. There are milestones for baby…
When Baby rolls over.
When Baby sits up.
When Baby eats solids.
When Baby crawls. 
When Baby stands. 
When Baby walks.

The Milestones continue into the preschool years…
When He can count.
When He can say his ABCs.
When He knows his sounds.
When He learns to read.
When He can write.

There are religious milestones, too, like when He says his prayers, or Receives His First Holy Communion.

There are big-boy milestones, too, like when he gets his drivers license or graduates high school.

Milestones are a huge part of growing up- they really are.

Today is three years since Vince had his first brain surgery.

A few weeks ago, this picture popped into my facebook newsfeed. Apparently it had been one year since Vince had surgery to have his port inserted. A milestone for sure.

He’s eating crackers after he has awoken from his port surgery.

With Vince and his brain tumor battle, he has tons of milestones we never asked for. Who ever wants a port and who wants to have one for a whole year (and counting)?

When Vince was an infant or when I was pregnant with him, my husband and I anticipated his milestones. We wondered when he would walk. We wondered when he would talk. We thought about his future. Would Vince follow in his father’s, grandfather’s and great-grandfather’s footsteps and be a Lincoln County farmer? Would he get married and make me a grandmother? Would he become a priest? Never, never, never did we think he would have brain tumor. Never, never, never, did we think he would have all of the milestones that go with it, like a port, chemo, experimental medicine, MRIs, speech, PT and OT to overcome his residual effects. I never even knew what a port was.

These are just a fraction of all of his beads. Each bead represents a different piece of his brain tumor battle, a milestone, for example, when he has his port accessed.

Vince’s brain tumor battle has brought many more milestones with it, milestones we never asked for, milestones that were never even on our radar.


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It’s the Brain Tumor, Stupid

We probably all remember the leaked catchphrase of the Bill Clinton campaign: It’s the economy, stupid. The theory was that no matter what Bill Clinton’s personal life was, what the state of the country was, etc., nothing mattered but the economy. If people were prospering, they would not vote for a change in leadership. This theory must have worked because Bill Clinton was our president for two terms.

Vince has been fighting his brain tumor battle for over three years. The brain tumor has dominated everything.

In November and December, we took a big trip to see my mother in New Jersey. When we were planning for the trip, my mom lamented at the fact that we hadn’t been to visit in three whole years, that she hadn’t spent a significant amount of time with the children in three years. My mom who absolutely loves her grandchildren was understandably sad. While I didn’t call my mother stupid, I explained, It’s the brain tumor, stupid. It really is. It was the financial strain. The mental and emotional energy required to fight this. The logistical challenges. The uncertainty. The… the… the brain tumor.

Last week, I was speaking to someone at Children’s Hospital Colorado. I will spare you the exact details because I don’t want to embarrass Vince, but the CHCO person legitimately asked me, “Do you think this is caused by the brain tumor?” She’s lucky we weren’t in person. I’m not sure what my reaction would be. It’s the brain tumor, stupid. I didn’t have the audacity to actually say. I bit my lip. You work in the brain tumor department (aka neurooncology), I wanted to point out. Is this particular thing caused by the brain tumor? Maybe. Is it caused by the brain injuries of two brain surgeries? Is it caused by the residual effects of ten months of chemotherapy? Is it caused by this new experimental medicine he’s on? Is it caused by the actual growing brain tumor pushing on something or other? Is it simply caused by me spoiling him (even subconsciously) because of everything he’s been through? The truth is that I don’t know the exact mechanism, but I definitely do know that it’s the brain tumor, stupid. In this lady’s profession, she should know this. When the dust has settled, I will think of a calm way to tell her this: it’s the brain tumor, stupid.

It’s the brain tumor, stupid. It really is. I wish it wasn’t. I wish that the brain tumor wasn’t the theme of the stage of life we’re in now. As much as we may pretend it’s not, as much as we may concentrate on other things, as much as we are busy with other things, the brain tumor is in the background. It’s what our thoughts go to late at night or in those silent moments or during those long boring drives back on forth on I-70 through the prairie of Colorado to the Front Range and CHCO. It’s what my internet searches are about. It’s the driving force, like it or not. We will fight this brain tumor and all of the secondary effects of it. We will win, even if it means going to the ends of the earth to fight. This doesn’t mean that we’re not living otherwise- we still live and school and shop and farm and even have fun sometimes. It means that the brain tumor dominates everything whether we want it to or not. It’s the brain tumor, stupid. 

This is the original brain tumor at diagnosis in 2014 before any resections or any growth during chemo.

 

 


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