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.

Another Fourth of July

It was in June of 2015 that we learned that Vince's brain tumor had grown back again. Vince would need another tumor resection surgery and perhaps chemotherapy. They were unsure about his prognosis. We made plans for a second brain surgery.

Last Fourth of July (2015), as I was driving the children to the fireworks in the local town (to meet my husband there after he got off work) it hit me: what if this was Vince's last Fourth of July? Independence Day was the first holiday since that diagnosis, and it hit me, hit me hard- this mama had a break down that night.

Well you know the rest:
He had the brain tumor removed.
It grew back again.
He started chemo in March, and now chemo is our new normal.

Vince is surviving and thriving.
Yeah, his tumor did get bigger between the last two MRIs in spite of starting chemo.
Yeah, they moved up his next MRI a month sooner to keep a closer eye on it.
Yeah, they may change up his chemo depending on the next MRI results.
Yeah, this tumor could be a lifelong battle for him.
Yeah, he could be on chemo for years.

We don't know what his future brings.

But yesterday, Vince celebrated another Fourth of July. And this is a victory.

I rejoiced in celebrating the Fourth of July- not just because it's our country's birthday, but because it was one more Fourth of July that I can celebrate with Vince!

Vince cannot wait to celebrate Fourth of July 2017- he's already talking about more fireworks.

Happy Fourth of July 2016!

Chemo

My son Vince, who is 4 and half as of this writing, has been fighting a brain tumor for the last two years.  He is now receiving chemo weekly from Children’s Hospital. 

Many of you have asked me some questions, so I’m going to attempt to answer the most common questions here.

What is the history of his brain tumor? 
Vince has a pilomyxoid astrocytoma in his left frontal lobe.  We discovered it during an MRI for something else (a little lump thing at the base of his neck). His first tumor was the size of a golf ball. He exhibited no brain tumor symptoms at the time.  If it wasn’t for the MRI, we wouldn’t have known about it. 
His first tumor was resected in March 2014.  The surgery was a success. They got the whole thing.  They sent it off for analyzing and it was a pilomyxoid astrocytoma. 
The tumor grew back again and was resected the second time in July 2015.  It was the size of a grape and was still a pilomxyoid astrocytoma. 
The tumor grew back again.  Since it grew back twice after surgery, we’re trying chemotherapy.

How did the tumor grow back twice if both surgeries were successful?
If even one cell was left, the tumor could grow back from that. 

Is it cancerous? 
Well, it depends on who you ask. 
The World Health Organization considers all brain tumors cancer.  Physicians in the United States do not. Brain Tumors are “graded” on a scale of 1 to 4.  A pilomyxoid astrocytoma is a grade two and only grades three and four are malignant.

If it’s not cancer, why is he getting chemo?
He is getting chemo to kill this tumor.  Chemo will still kill it in theory.  Without treatment, he could die from this brain tumor.

What is his prognosis?
They are saying it is good, but they also said it wouldn’t grow back.  It’s all very scary.

What is his exact chemo regiment?
He is getting carboplatin, a milder chemo, once per week.  He goes four weeks on, two weeks off. Each “four weeks on, two weeks off” is called a “round”. They say for a year, but it could be more or less depending on his MRIs.

How do you know it’s working?
We don’t.  He’ll have a new MRI approximately every three months, after every other round.  His next MRI is in May. 

If he’s getting chemo, why does he still have hair?
The particular type and dosage of chemo (carboplatin) that he has does not cause severe hair loss.  They said it would thin his hair, but we haven’t noticed it thinning yet.

What is chemo made from?  What is it like? 
Vince’s chemo is made from platinum.  It’s clear, like IV fluids.  He gets it through his port.

What is a port?
A port is a long term IV (implanted surgically) that’s in his chest.  They take his blood and give him his chemo through the port. 

What care is involved in the port?
Now that the incision is healed, we only have to watch for a fever.  If he has a fever of 101 or over, he has to go to the hospital to get fluids and tests for infections.  This happened once, before his first chemo treatment. He did not need to be admitted at that time.

What do they call it when he goes for chemo?
Every chemo treatment is called an infusion.

How does the chemo affect Vince?
Vince gets nauseous.  He’s thrown up from it.  We have zofran, an anti-nausea medication to lessen his ill feelings.
He has had a day on the couch all day, just feeling sick.  He has also had times where he was out playing the next day.
He sometimes gets pains in his legs, behind his knees.

My second-cousin-twice-removed’s former college roommate had cancer and beat it with eye-of-noot/ raw honey/ essential oils/ going vegan/ going paleo/ smoking a joint, etc. Why don’t you____ and skip the chemo?
We have tried a few “alternative” things.  They haven’t worked.  The tumor is back.  We need to kill it.  I would not not treat it with chemo and have my son die because we did something unproven.  I feel like we are past the point of trying these “alternative” things.  We already did a few. They didn’t work.  We just can’t fool around anymore.

Denver is no New York. Why don’t you take him to a better hospital in another city?
Children’s Hospital Colorado’s neuro-oncology is within the top ten in the nation.  We have also consulted long distance with another top ten hospital in another city.  Treatment in Colorado is the best for us as far as the impact on our family.  The treatment itself isn’t any different.

How far is Children’s Hospital from your house?
101 miles.  There are no local resources.

You have children that you homeschool. How do you do that and take Vince to chemo?
We reworked our schedule and chemo is part of our new normal.

This was Vince's last infusion. He was receiving his chemo and drinking juice.

Chemo Starts Monday

Vince starts his chemo treatments on Monday 2/22. 

Last week he had surgery for port insertion.

His chemo will be once per week, four weeks on, two weeks off to start.

This is all very scary.

Vince ate crackers soon after his port insertion surgery.

The surgeon who did the port surgery, I'll call him Dr.Surgeon, was the same pediatric surgeon we met over two years ago.  I had taken Vince to Dr.Surgeon to consult about removing that little ball-lump-thing at the the base of his skull, on the right in the back. 
"He should have an MRI beforehand," Dr. Surgeon said. "I'm worried it's entangled in the nerves."
Kevin and I discussed this and agreed to Vince having an MRI to see exactly what that lump was.  They found the brain tumor as a surprise.  So if it wasn't for that lump, if it wasn't for Dr.Surgeon's good instincts to suggest an MRI, we'd never know about Vince's tumor until much later. I am forever grateful to Dr.Surgeon.

On Thursday (1/21/15) Vince had his follow-up MRI.  He also had an MRI of the spine. The spine is good.

The brain tumor is back.  Again.

Because this is third recurrence, the treatment options are more specialized.  The neuro-oncologist will consult with the rest of the neuro-oncologists, the neuroradiologists and the neurosurgeons to develop a treatment plan.  We have an appointment Monday which is after their meeting and we'll know more then.

On Hold

Vince's last MRI in October was ambiguous again. 

They thought it might be coming back. 

There is a definite area that was there in October that wasn't there in July on the MRI two days post-surgery. Is it a tumor or just part of the healing process?  They don't know. 

So for now we wait.

And hope.

And pray.

If it is back, they'll do chemo.  Vince's next MRI is in January.  We're on hold until then.

Pray For October

I've been negligent here.  Vince had his brain surgery and I didn't even have any updates.  His surgery went great!

Please please pray for him for October.  In retrospect they can see where the tumor was coming from and think perhaps they didn't get the whole tumor the first time.  They think they got it now.  Vince has an MRI on October 12th.  They'll check it then and see if it has grown back.  If it doesn't grow back, then he won't need chemo.  Please pray for good results on October 12th.