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.

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! 

Good News

Last week (on March sixth) we had a followup MRI for Vince at Children's Hospital.  It was three months from his surgery and was his first follow-up MRI post surgery (besides the one they did the next day). 

We had great results!  The tumor shows no signs of returning!  The brain has moved a little bit back into place, although he'll always have somewhat of a "hole" in his brain where the tumor was. 

The MRI itself went smoothly, too.  Vince has to be anesthetized for it.

We will follow up with another MRI in six months.

Haircut and Drooling

Yesterday while I was in Colorado Springs, I took Vince to get his hair cut by a professional.  It was his first haircut since surgery.  I had been afraid to do have it cut, either by Kevin or a professional.  But life must move on and hair grows, right?  You can see above that he really needed a haircut.  You can also see his scar is visible under his light hair. 

Vince has started to drool. Again.
As a baby, Vince was never really a drool-er.  Starting a little after he turned two, we noticed he was drooling.  His drooling increased and increased.  We never thought much about it.  His drooling seemed to be when he was doing speech or playing, when he was concentrating.  After his surgery, the drooling stopped.  Like stopped dead on, not a gradual stop.  Kevin linked it and we thought that the drooling possibly had to do with the tumor.  When I emailed Dr.Neurosurgeon to make him aware of this, he said he would not have thought of drooling as a symptom from the tumor, unless it was causing some difficulty with control or sensation or movement of his mouth.  He also said the timing made sense, but drooling was a "new one" for him. 
Vince has started to drool a little bit again.  I don't know if I'm paranoid, but I'm scared.

Vince has a followup MRI in June. 

Please continue to pray for Vince.

The Miracle of Neurosurgery

As I have talked about on here, as you can imagine, as I have shared with you, Vince's tumor totally caught us by surprise.  My husband and I went through an entire range of emotions, from the discovery to the surgery and recovery.

Neurosurgery sounds like a horrible prospect- cut into scalp, cut off a piece of skull, cut into brain, remove the golf ball and put it all back together again.  I was shuttering at the thought of it, and rightly so.  Neurosurgery should not be taken lightly.

I was praying for a miracle.  I even dappled into some alternative treatments, ones that even if they did nothing wouldn't harm.  Father came over and blessed Vince with a relic of the True Cross.  The Other Father also gave Vince more special blessings.  People prayed.  All people prayed.  Our family of course prayed.  Our friends and loved ones prayed.  Prayer warriors prayed.  Those who were not inclined to pray prayed.  Orders of nuns and monks prayed.  I'm sure St. Vincent de Paul, Uncle Vince and GreatGrandpa Vincenzo all  prayed, too.

I thought we could have a miracle. Of course, I planned for his medical treatment.  (We even took him 500 miles away for a second opinion.)

I was adamant about getting Vince a second MRI before surgery.  I feared they would get into his brain and not find a tumor.  I thought perhaps the alternative treatment had worked.  I thought the prayers had worked.  I thought maybe they made a mistake with the original MRI or they mixed it up.  In any case, I was not going to let them cut my baby's brain open without a second peak first.

The first doctor that we saw for a second opinion here in Colorado refused to do a second MRI.  The Kansas City doctor agreed to do the second MRI.  I would have walked there if I had to.  The actual neurosurgeon, Dr.Neurosurgeon, did order a "planning MRI".  It was a mapping MRI to hook into his computer and guide him during the operation.  We did it two days before surgery.  That's OK, it was still another peak into his brain before surgery.

When we had a consult with Dr.Neurosurgeon Ash Wednesday afternoon, two days before surgery, Vince had just had his MRI.  They had the preliminary results back right then.  The tumor was still there.  There wasn't a miracle.  The alternative stuff didn't work.  They hadn't mixed it up.  I was disappointed.  My heart was in my mouth.  I was sick. I was expecting a miracle.

We went through with the surgery, as planned.  For me, it almost seemed like I was going through the motions of it, a normal thing during stressful times.

They had told us that Vince would be in the hospital 5-7 days for recovery and perhaps a month for intensive therapy (kind of like rehab for old people).  They said Vince might have neurological speech issues.  They said Vince might have motor issues on his right side since the tumor was on the left.  They said they weren't sure if they'd get all of the tumor out.  They said they didn't think it was cancer, but they weren't sure what it was.

I wanted a miracle.  I didn't want to go through all that. I didn't want to put my baby through that.

Let me tell you this... Neurosurgery is a miracle!

Yes, neurosurgery is a miracle.  We were praying for a miracle, and we got it, just not the way I would have chosen. But that's OK.  We got a miracle.  Even discovering the brain tumor was a miracle, too.

Vince did excellently in his surgery.  He did excellently in his recovery.  Vince went home from the hospital on the third day.  He did not and does not have neurological issues.  He seems to be himself.  His speech seems about where it was before the surgery.  He has no motor issues.  They got all the tumor out.  It is not cancer.  Vince is the precious rascal two year old I know and love.

My wonderful brother-in-law stayed with us for the surgery.  He kept my sanity.  My wonderful priest came and gave Vince another special blessing immediately before surgery.   Everyone kept up their diligent prayers.  Dr.Neurosurgeon did an excellent job. This all is what I call a miracle.  God uses doctors and hospitals for miracles, too, and neurosurgery especially is a miracle. 

Thank you, Oh God, for this miraculous healing of my Vince.

(Linked to A Mama's Story.)

Benny Is Home!

I just wanted to post a quick update to say that Benny is home!

Deja Vous All Over Again

Vince is recovering wonderfully!  He amazes me.  God amazes me in His healing abilities.

We had the stomach virus pass through our house this week.  This is not fun, especially if you can imagine that we have five children five and under.

Benny, Vince's baby brother who is currently five months old, seemed to have it the worst.  Like totally the worst.  He just would not. hold. anything. down...

To cut a long story short, we are now in the PICU at Children's Hospital with Benny.  We are just two rooms down from the room Vince was in.

It's like Deja Vous all over again, and it was just when I thought things were returning to normal...

Please continue to pray for Vince and pray for Benny, too.

Pilomyxoid Astrocytoma

Today Dr.NeurOncologist called with the final pathology results.

Vince's tumor is a Grade II Pilomyxoid Astrocytoma.  Dr.NeurOncologist puts it at a 5% chance of recurrence. Pilomyxoid Astrocytomas are a relatively "new" discovery.  Most occur in other areas of the brain.  Dr.NeurOncologist said that because it was completely resected (doctor speak for removed), Vince has a lot better prognosis than other patients who have the same type of tumor in the usual areas since the tumor usually cannot be completely removed in these other brain areas.

It is an extremely unusual type of tumor for Vince's genetic disease, but Dr.NeurOncologist still thinks it is from it.  I found two academic peer reviewed papers online that said there were only two cases of this type of tumor in patients with Vince's genetic disease.  Ain't we special...

So we'll be followed by Dr.NeurOncologist... Vince will have scans every so often to make sure it doesn't come back...  It ain't over... Monitoring for recurrence will be a way of life for us...

Pathology

So what is the pathology? many people have asked.

On Thursday, we went back up to Children's Hospital to see the neuro-oncologist (and also went to a follow-up appointment with the neurosurgeon's PA).  We had originally seen Dr.NeuroOncologist when we had first received Vince's diagnosis.  Thursday, Dr.NeuroOncologist had printed out scans from the MRI from before and after the surgery.  Vince's surgery was a success!  Dr.Neurosurgeon had gotten all of the tumor out!  The area that the tumor used to be in was now filled with fluid, Dr.NeuroOncologist said, and showed us on the scan.

Dr.NeuroOncologist was unsure of the tumor was Grade I or Grade II.  He'll know in another ten days when they are finished with the pathology.  If it is Grade I, Dr.NeuroOncologist gave the tumor a 2% chance of growing back.  If it is a Grade II, Dr.NeuroOncologist gave the tumor a 5% chance of growing back.  (I don't have much confidence in statistics, because even with Vince's genetic disease, his chance of a brain tumor to start with was only less than 1%.)

Vince will get a follow-up MRI in three months, another one six months after that and then yearly from then on.  They will just be following him and monitoring him to make sure he is OK.

Dr.NeuroOncologist then gave Vince a neurological examination which Vince passed with flying colors.  He also checked Vince's incision and asked us some questions regarding his demeanor, appetite and such.

Later that day we saw the NeurosurgeryPhysicianAssistantLady.  That was a waste of time, really.  She looked briefly at his incision.  She asked us the same questions about Vince's appetite and such. She did not do any neurological testing.  Her appointment was 4 hours after the first.  We had to actually go back to the hospital for it.  It was a waste of time, really.

Both the NeurosurgeryPhysicianAssistantLady and Dr.NeuroOncologist agree that Vince is doing fantastic.  I agree, too, and I know it is all of your prayers.

I made a follow-up appointment with Dr.Neurosurgeon for April.  If Vince continues to do well, he'll be released from Dr.Neurosurgeon's care then.
Amazing.
Neurosurgery is truly a miracle.

VINCE IS HOME!!!!!

GREAT NEWS EVERYONE.....Vince is HOME!!!!!!!!!

I am so excited, proud and amazed!  Please continue the prayers and respect of privacy for the family at this time....Laura will be posting here again within the next few days.

Thank you everyone!!

Ciocia