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.

Vince Is Doing Great

Many of you keep asking me how Vince is doing.  The short answer is that Vince is doing great, but I'll try to expand...

Vince has been doing wonderfully.  If it wasn't for the MRI, we would never know that the tumor had grown back. 

Vince's speech issues have improved by leaps and bounds.  As I had mentioned in the last blogpost on here, Vince has really turned a corner on his speech since March.  He speaks in longer sentences all the time.  He is more understandable, both in the words he uses to describe things and his actual articulation.  He is doing awesome in his speech, although he still is not at the level he should be.

Vince is finally daytime potty trained.  If you know Vince, you know he is almost four and that he still wasn't potty trained.  He is now an expert.  He keeps himself dry and clean.  He does wear a pullup at night and does actually need it, but I'll take one diaper per day over a bunch.  How did I train this stubborn boy, you may ask.  We went online to Target and The Childrens Place and I pulled up the boys underwear pages.  I told him he could pick out whatever underwear he wanted and that the maillady would bring them.  He settled on Thomas the Train underwear from Target.  He anticipated their arrival, asking every day if they had come.  When they finally arrived, he put them on.  He had a few accidents the first few days but has now gotten the hang of it.  I didn't think his other plain white or football underwear were too bad, but apparently he did. 

Vince is in the 97th percentile for height and weight.  I just took him to the doctor yesterday for his four year old well baby visit.  He is in the 97th percentile for height and weight.  Some of his pants are too short and his shoes are getting snug.  He is growing and he has the build of a football player. He eats everything and weighs more than his big sister.

Tomorrow is his 4th birthday.  He's been talking about eating cake on his birthday for months, even telling strangers.  After I post this, Vince and I are baking a cake.  We'll celebrate his life and St. Vincent de Paul.  Tomorrow is also Vince's Name Day, the Feast of St. Vincent de Paul.  St. Vincent de Paul, pray for Vince!

Earlier this month....

Round Two

Vince had a followup MRI Monday.  The tumor has returned.  It's about the size of a grape.  He'll be having neurosurgery again soon (7/27), followed by chemo.  (I can't believe I'm typing these words, that I've had to return to this blog.)

I'm going to try to answer some questions you may have, in no particular order...

1. Weren't his followups good? Yes.  After the June 2014 followup MRI, Vince had another one in December 2014.  The results of that one were ambiguous.  They weren't sure of it was scar tissue or new tumor. There was nothing to do but wait and pray, do another MRI three months later and compare.  March's MRI was good.  They said it was scar tissue.  This tumor is a new development.

2.  What are the risks of surgery again?  He has the same risks as before, chiefly speech issues (since this is in the area of the brain that controls speech) and motor issues on the right side.  He did not have any regression last time with these, but these are the risks of the surgery.

3. Is the brain tumor in the same spot? Yes.  It is in the left frontal lobe, the area of the brain that controls speech. Is it smaller? Yes.  It's a grape now and it was a golf ball before.

4. Will he receive radiation? No, just chemo is what the oncologists have told us.

5. Is it cancerous?  Why are they planning chemo? Cancerous is a subjective term.  His last tumor was a pilomixoid astrocytoma.  It was a phase two tumor and usually phase one & two are considered non-cancerous while phases three and four are.  They had given it a 5% chance of growing back.  They believe this tumor to be the same type as the other, but they won't know for sure until they do the pathology.  The World Heath Organization considers all brain tumors cancerous because they wreak so much havoc, no matter what.  Chemo is necessary this time to get rid of it because surgery alone didn't work last time.

6.  What is the general plan?

• Vince is having his brain tumor removed on July 27th.  He'll be in the hospital for five to seven days afterwards. 
• After he is healed enough to go home from the actual surgery, he'll be evaluated to see if he needs rehab (they call it something else for little kids, intensive in-patient therapy, maybe).  If he needs rehab, he'll receive that also at Children's Hospital as an inpatient.  This could be speech therapy and/or physical therapy, and this depends on if the brain surgery has affected him these ways or not.  (Pray that it doesn't.)
• One they remove the tumor and run a pathology report on it, it will be time for chemo.  We won't know the details of the chemo plan until they know what they are dealing with, that is, have the pathology report (which they cannot do until after removal). 

7.   Had Vince been showing any outwards signs of this?  No.
In the past three months when this tumor grew, Vince had been making rapid gains in his speech.  Kevin and I were amazed, actually.  It seemed every day almost he was saying more and more words that he didn't say before, longer sentences, telling more stories, etc.  Everything was clicking for him, really since March. I had been saying (I'm not a neurosurgeon of course) that it took his brain a whole year to heal, as it was exactly a year after the first tumor removal in his left frontal lobe (the speech area of the brain) to really get his speech going.  Prior to a year post surgery, Vince had been making some speech gains, but he had been chugging along slowly.  From March 2015 until now, he's just amazed me, although he still has a way to go to be up to proper speech for his age. 

8.  How old is Vince now?  He'll be four before surgery, on the Feast Day of St. Vincent de Paul on the old calendar.  St. Vincent de Paul, pray for us!