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.