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.