I Would Walk Five Hundred Miles

I would walk 500 miles. And I would walk 500 more...

Or in this case drive.  That's 500 miles for a real second opinion.  And that's what I did. And drove home 500 more...

On Thursday January 23rd, we made an appointment in Kansas City to get a second opinion with their neurosurgeon.  (I had a lot to do to even get that appointment, which is a long aggravating story.  Apparently, you can't just get an appointment with a neurosurgeon, you have to be referred.  One would think that parents wouldn't just make up their son having a brain tumor and that if parent calls and says 'My kid has a brain tumor.  He needs to see the doc.' that the appointment scheduler people would go ahead and make the appointment without a big boatload of paperwork which apparently parents are incapable of filling out since it must come from another doctor.  The pediatric neurosurgery departments that I contacted in Nebraska and New Mexico also had the same policy.  But I guess I am digressing...)

Kansas City is just far enough to make an overnight stay necessary, especially with a little one.  I was in the mood to celebrate life.  My oldest turned five on January 22nd, and we celebrated his birthday in Kansas City.  Kevin's days off now are Wednesday and Thursday.  When he got home from work Tuesday, he helped me with some last minute packing.  We hit the road and drove 500 miles to Kansas City, arriving in the morning. Driving through the night works well for little ones since they sleep through it.

Vince made his own currency at the Federal Reserve Museum.
I think he's way cuter than Andrew Jackson, don't you?

In Kansas City, we visited the Federal Reserve Museum and the Nelson-Atkins Museum.  They were both free, but we did have to pay $5.00 for parking in the Nelson-Atkins Museum.  We packed our breakfast and lunch and ate them in Kansas City.  We had a blast at both of the museums.

We then drove to the hotel.  We went swimming there and the ate dinner and went to bed.  Kevin, the children and I were truly exhausted.  We slept in late and ate breakfast also in the hotel.  (We stayed at the Drury Inn because they feed us two meals for free.)

Children's Mercy Hospital was less than one mile from the hotel. I went the early to drop off the cd of images from Children's Hospital Colorado.  I needed to allow adequate time for the information to upload into Children's Mercy's system.  I went back to the hotel and we checked out and went to Children's Mercy as a family. 

We saw DrKansasCity.  He agreed with the Colorado doctors.  The tumor needs to come out.  There is no rush on the tumor itself since it is slow growing.  The reason for the rush is that the younger Vince is when they remove it, the easier time he'll have recovering.  DrKansasCity also does not think it's cancer.  I really like DrKansasCity.  I liked the way the staff treated us, even feeding my kids goldfish crackers to occupy them.  We are going with the Colorado team because it will be a lot easier on our family and also easier for the followup care. 

DrKansasCity does his planning MRIs a day or two before the surgery.  I will make the Colorado team do this a few days before the surgery as well.  They are not cutting my boy open until they get a second look.  There could have been a mix-up or something- you never know.  I know it's close to a zero percent chance of that, but I am his mama and they will not cut my son's head open unless they check one more time.

And I would walk 500 more...

if DrKansasCity would be the only one who would order the second MRI before the surgery.

Vince Doesn't Know He's Sick

Vince is a happy healthy little boy.  He has not experienced any symptoms of the brain tumor.  If it wasn't for the MRI of his head for that other bump, we'd never know about it.

Here he is in the exam room, while we
were waiting for DrSecondOpinion to come in.
He is excited to be drinking a "juice box" of milk.

He is in a very “helpful” little stage where he insists on helping with everything.  During our last visit to Children’s Hospital, when we went to see DrSecondOpinion, he insisted on pulling his baby brother in the wagon.

Here is Vince in the main lobby area of Children’s Hospital. 
He insisted on pulling his brother and refused to ride.

Here is Vince in the main lobby area of Children’s Hospital.
He insisted on pulling his brother and refused to ride.

He does not know he is sick.  He doesn't seem sick at all.

Vincenzo

Vince is short for Vincenzo.

We are crazy Catholics, so we decided to name all our daughters after Our Lady.  My great grandmother and all her sisters were all Maria Something.  We decided to copy that tradition and name all of our daughters Maria Something, too, and just call them the something.  Since we decided to confuse everyone with our Marias, we also decided to confuse people with the boys.  We named all of our sons Kevin Something and call them the something.

My Vince is actually Kevin Vincenzo.  Vincenzo is his middle name.  The "c" in Vincenzo is pronounced like a "ch", btw.  My great grandfather was Vincenzo.  He came to the USA on the boat from Sicily.  Vince is named in part after him.

Kevin had an uncle named Vince who died before Kevin was born.  He died a few days after a bad car accident from results of the car accident.  Vince is also named after Uncle Vince.

So my Vince is actually Kevin Vincenzo.

(His name is not Vincent.  I just wanted to make that clear.)

Vince was born on St. Vincent de Paul's Feast Day on the old calendar (before the changes of Vatican II). We are invoking St. Vincent de Paul's intercession.

St. Vincent de Paul, please pray for Vince!
Great Grandpa Vincenzo, please pray for Vince!
Uncle Vince, please pray for Vince!

DearBlogReaders, please pray for Vince!

The Look

When we went to Children's Hospital on Thursday, I saw a couple in the main hall who had The Look.  I know that look well. 

The wife had tears in her eyes.  I could see the worry, worry beyond worries, in her face.  The husband had that same look, too, but just a little bit deeper down.  He had his own worries, yet was trying to comfort his wife.  He held her hand. 

"Let's go downstairs and get something to eat," he must have said.  She didn't look like she was very into that idea but went along with it.   I'm just supposing all this.

A few minutes later, I saw them heading back to the elevators, the husband carrying a plate of food, the wife next to him.  They still had The Look. 

I don't wish that look on anybody.  Please also pray for them and their child.

What Is Normal?

What is normal?

Last spring was really cold, really late into the season.  Then it was wet.  Kevin was working a lot on farm stuff because a lot of it couldn't be done as early as normal.  So it was the same tasks over a few months condensed into weeks.  And then he had to plant again, since the rain washed some of it away.  It was difficult for me, with Kevin gone all day, every day, and me with the kiddos.  I thought, once all the crops are in the ground, then things could return back to normal again.

And then on July 21st, I headed to High Mass in Colorado Springs in my Ford Windstar minivan.  I looked at the odometer.  I had had the van for 30,000 miles.  I played with the window.  Kevin had finally replaced the window motor on the door, just three days before.  Just the week before that, Kevin had replaced the power steering pump, which had been also ailing that whole time.  I thought things were getting back to normal in general.  My van felt new.  The crops were in.  And then on my way out of town, the drunk driver slammed into us at the light, totaling the minivan and scaring my kids.  We were OK.  There was a whole rigamarole where I found out my license was accidentally suspended.  It was an error, but it took a week to straighten out.  Then we had to find a new minivan.  Once we get a new minivan, I thought, then things can return back to normal.

On my way back from picking up the new minivan in early August, with about 200 pounds of produce in the trunk to can or dehydrate, I received a phone call from my mom and aunt.  They were leaving the next day to visit me, their first trip ever since I've lived out here.  It was actually a crazy trip between my well running dry, the septic line backing up and canning.  My house was a mess, still recovering from that accident.  Once they left, I thought, then things can return back to normal.

Except that it was the beginning of September and then harvest time, with Kevin then working crazy hours again to get everything harvested. Once this farmwork is done, I thought, then things can return back to normal.

Except that I was due with Baby5 on September 25th.  I was uncomfortable, not to mention trying really hard to get the change of season/ new baby clothes / house ready, etc. Once the baby comes, I thought, then things can return back to normal.

Except that he was 11 days late, 11 days of torment for me.  Once the baby comes, I thought, then things can return back to normal. 

Except that I had a more difficult time recovering this time than I had in the past.  Once I recover, I thought, then things can return back to normal.

Except that we had planned a trip to visit my relatives in New Jersey.  By the time I felt better enough to do anything, it was time to pack, pack for seven people. We left for NJ the night before the baby turned six weeks old. Once we get back, I thought, then things can return back to normal.

Except that I ended up staying out there a little longer than I had initially planned.  Kevin had extra time off from work then and was going to help me drive back, which I needed. Once we get back, I still thought, then things can return back to normal.

Except that we got back less than two weeks before Christmas.  Oooh! A lot of preparations, not to mention unpacking and laundry.  Once it's Christmas, I thought, then things can return back to normal.

Except that we had the stomach bug go through our house on Christmas Day and week.  Once they're recovered, I thought, then things can return back to normal.

Except that we had an MRI appointment for my little Vince on the morning of January 2nd.  Once we get back from that, I thought, then things can return back to normal.

And, as you may or may not know, the MRI for something else showed that my Vince has a brain tumor.  My poor little Vince.  I am so scared. 

I also don't know any more what the heck normal is. 

Not a Second Opinion

Yesterday, we tried to get a second opinion. We headed to Aurora to Children's Hospital to see DrSecondOpinion. 

Except that it wasn't really a second opinion.  DrSecondOpinion had actually already seen the MRI.  He had originally consulted with DrNeurosurgeon and they had come up with their opinion together. So, yes, DrSecondOpinion of course had the same opinion as DrNeurosurgeon. 

Kevin and I asked DrSecondOpinion a whole bunch of questions.  A lot he was not able to answer.  It depends on how the surgery goes, I guess. 

I am terrified.  I am terrified for my Vince.

Isn't taking a perfectly happy little boy and putting him through this horrible process child abuse?  (Which I am doing... as soon as I get done with this blogpost, I am calling the surgery schedulers.)

Also, I don't think it's too much to ask for a second opinion before they cut off a piece of my son's skull and cut through his brain.  Maybe that's just me, just my opinion.

So How Do They Know?

"So how do they know that Vince has a brain tumor?" is a question that I get a lot.

Late last spring (2013) I noticed Vince had a lump on the back of his head on the right towards to hairline.  I took him to the doctor for it.  I saw the physician's assistant. 
"Oh, that's nothing," the physician's assistant said.  "We'll watch it. His well baby visit is in a month, so we'll check it again then."
"Are you sure it's not brain cancer?" I asked.
The physician's assistant went through all the symptoms of a brain tumor, including uncoordination and vision problems. He also explained that this lump was on the outside of his skull.  I remember this conversation very well.

In July, I took Vince for his two year old well baby visit.  This time I saw the doctor.  "It's not a big deal," he said, "watch it and if it gets bigger he needs to see a pediatric surgeon."

Fast forward to October.  Kevin gave Vince a haircut.  I thought it looked bigger, but I thought it might have been the haircut.  I called up Children's Hospital and made an appointment with a pediatric surgeon for early November.

When we took him to the pediatric surgeon, he said, "That's lump is not a big deal, but Vince needs an MRI to find out exactly where it is."  He also explained that the MRI is with anesthesia since Vince is two and will not hold still. So Kevin and I discussed it and made the next available appointment for an MRI, which was January 2nd.

Little did we know that the MRI would show a whole different additional lump, a brain tumor. 

Grief

When I was 25, my father died.  It was on the sudden side.  He had started to have strokes.  Then he went into a coma.  Then he was gone.  From the time we found out that he had had his first stroke to the time he died was around one month, maybe a little more.  (Everything comes together after a while.)  Two months to the day before he died, my cousin got married.  My parents were dancing around at the reception, and two months later my dad was dead.  Anyway, bottom-line is that I have grieved a great grief before.

I know what grief feels like (although grief is different for every person at every point) and I find myself grieving, grieving for my Vince’s illness.  I don’t understand why I feel grief.  Vince is going to be OK.  Actually as far as brain tumors go, he has a good one to have.  Right now he is happy and joyful and active and just like any two year old.  I shudder at what is ahead of him.  I shudder at what is ahead for our family.  I shudder at what is ahead for us all.  I look at my happy boy and I want to cry.  I do tear up sometimes.  I grieve for what my baby has up ahead, for what he has to go through. 

It is a different grief.  But it is still grief. And it is also scary. Like scary in a whole different way than I ever thought I could be scared.  My poor Vince.  You have quite a battle ahead.

My Son Has a Brain Tumor and I Am Starting a Blog

My son has a brain tumor.  There.  I said it. 

I learned about this on Thursday afternoon.  It is now Tuesday.  At first, I couldn't even say it.  

The few people that I did tell most typically answered me, "What?".  I then had repeat it.  The words I could hardly say. "Vince has a brain tumor." 

Half of me wants to cry again, every time I say those words.  It's almost as if I'm learning it for the first time myself.   It's almost as if I'm hearing someone else say them.  Someone else saying them about someone else's kid.  I think for a split second how horrible it is. And then I remember it's my kid. My Vince.  My beautiful Vince is the one with a brain tumor.  I cry.  I cry on the inside all the time.  I cry on the outside some of the time.

I am starting a blog.  You may remember that I already have a bunch.  I thought the blog would be an easier way to me communicate with the world.  It saves me from all the Vincehasabraintumor/What/Vincehasabraintumor exchanges.  I think this will also save some logistic headache as far as keeping people informed.

So many people have already shown us great support in their actions, words and prayers.  Thank you all for your support and prayers.

This is Vince this morning on his way out the door to Storytime. 
He doesn't even realize he is sick.