My Kids' have new big sisters

I just noticed that i never posted this from last year.  So here it is

Ok, officially they are not their big sisters.  We haven't adopted anyone.  But the way these two have taken to my kids and treat them, and us, as a family amazes me!  And to top it off they are PSU Students!

How we met, if you didn't know my son had a brain tumor, he had to got through surgery twice to have it removed and then the regrowth removed.  We had the privileged of having the surgery completed at Penn State Hershey Children's Hospital.  Along with that we qualified to be apart of the four diamonds fund, which help paid all our bills and it contributed to building the new Children's hospital at Hershey.  Well, who is the largest funder of the four diamonds fund?  THON!  For those of you who don't know, it is a PSU Student ran philanthropy that only supports the four diamonds fund!  Being apart of THON, an organization adopted us, and these two were apart of that organization.  Not only did they go threw the motions being apart of a THON organization, the went above and beyond of what I expected.  They reach out all the time, they have befriended my kids. 

Both of my kids get so excited when they know either of these two are coming to visit, or that we'll see them at any event.   

I didn't get their permissions to put their names here, but they know who they are and they should be proud of who they are becoming.  And if their parents see this, they should be proud parents of these two wonderful young adults!

Again these are College Students with the biggest hearts that are touching my family.

My Wife Needs Neurosurgery (Brain Surgery) scheduled for Tuesday May 28th, 2013

Tiffany has been diagnosed with Chairi malformation, where her cerebellum tonsils in her brain are partially below her skull and are causing her spinal fluid not to flow correctly. Chairi Malformation surgery is considered brain surgery even though the doctors should not get "near" the brain compared to other brain surgery.  Although, the doctor's will do a craniotomy to expand the area under the skull by using cow parts and then reattach (sounds simple, but you know it is brain surgery, therefore, it is more complicated than that).

Anyways, this isn't something that just appeared, they say she was born this way.  Research doesn't know why some people with this malformation have issues and others doesn't.  They also don't know why it appears randomly throughout life.  But Tiff has had problems with balance all her life, and within the last 5 years she has really had difficulty with virtigo.  And recently she started having more frequent and longer lasting headaches.  Last week, she spent a week in the hospital due to it, where they decided to run lots of tests (thinking she maybe had lymes disease, but the official test came back negative).  Luckily for us, they requested a neurosurgeon to review her MRIs and he found the issue.

The risk isn't as high as Noah's neurosurgery was, but the recovery will be, and it maybe longer due to the location of the incision.  She'll have a week of recovery in the hospital, and an additional 4-6 weeks at home with recovery.  After that she'll be off a total of 3 months from work due to her responsibilities (childcare).

A Year ago today and a special one-year anniversary trip

I can't believe it has been a year already!  April 23rd will always stick in my mind as a day my world changed.  On that day a miracle happened when our eye doctor did a little extra checking and found swollen optical nerves.  He then proceeded after hours to follow up with a neurologist and called us at night to send us to the ER.  

We have so many people to be thankful for: all the nurses, child life volunteers, regular staff at Hershey, Dr. Iantosca and his supporting staff, all of our friends, and all of our family.  But we would have a different world right now if Dr. Talone didn't follow-up, didn't go above and beyond his job.

And now we have to be thankful for so many more people.  Today we are traveling to Pittsburgh Airport to fly to Orlando, FL.  That is right we are headed to Florida to visit Mickey and Minnie Mouse.  Thanks to Make-a-wish for such a great anniversary gift.

We've never shared photos of that horrific week.  So today, I thought I would share some.  Please enjoy them, the bring so many emotions back, but in the end the emotion is joy, because we get to spend today with Noah!  

Here is Noah and Sydney April 24th, 2012 in Penn State Hershey Hospital at the Lion Shrine.  Notice how excited Noah looks.  The rest of us weren't so cheerful.

Noah got to meet and become fans of the PSU Men's Basketball squad.

His favorite player became #23 Tim Frazier!

Friends and Family came to the hospital to keep Noah in a cheerful mode.

Here is his Cousin Lauren.

Got to Hug the Nittany Lion

Noah's favorite Angry Bird went into Surgery with him.

Immediately after surgery in the PICU (apx 6pm)

The next morning still in PICU, but swelling has increased.

Giving us a smile

While in the PICU his sister wasn't allowed to visit and all either of them wanted is to be with each other.

Here they are together with the cousin Talia!

This is the first time we got to see the incision area.

When we were released from the Hospital the both wanted to go through Hershey Chocolate world.

Ronald McDonald House was a savior for us.  They put us up for free while Noah was in Hospital.  This is one of the statues outside of the facility!

Due to the location of the tumor Noah had to have a spinal tap to verify it didn't spread.

To end the blog, I decided to show a happy picture.  We got to tour Beaver stadium!  It was an awesome experience and it was even sweeter because our little boy was with us enjoying it.  Here is Noah and Sydney sitting in the end zone on the field.

Noah's Peripheral Vision loss from surgery

Some of you have been asking how Noah is doing.  As his parents we think he is doing great!  But from the outside looking in, people might differ their opinion.  Noah has a large loss of his peripheral vision.  Most of his left side peripheral vision he can't see.  Even though he is adapting quickly, there are times he runs into stuff he didn't see.  There is a good likely hood this will not return, but he may gain some of it back.  Only time will tell as his body heals and grows.

Noah's First MRI after 2nd Surgery

I apologize for not posting this earlier, but like everything else, time is flying by so quickly.  And it is easier to forget to post the good news.  Anyways, Back on Nov 9th, 2012 we had MRI Clinic day.  This is a scheduled day that the doctor's at Hershey dedicate to MRI and reading the results the same day.  So at 8 AM Noah had his MRI, and like many of the other MRIs he did it like a champ!  In and out within 30 minutes.  But this time, we had almost the entire work day to wait until his appointments.  And due to his Surgeon being on vacation, and because of how quickly the occurrence came back, they had us scheduled with the 3 doctors.  It was suppose to be at 2.30pm, so we show up at 2 to check-in.  But we wait, and wait and wait, just to get a room, somewhere between 2.45 and 3 we get a room.   And then we wait, and wait and wait.  Until almost 3.45 when our Oncologist comes in the room.

Both Tiff and I thought the same thing, -oh no, it's back-, why would you send in the oncologist.  Why because he is a great guy, likes to give good news every once in a while.  He introduces himself and asks how we are, I say nervous... He quickly responds with, it is good news!

There is no signs of another occurrence.  We went along with the appointment with the Oncologist and the Neurologist.  And made the phone calls and posted it to facebook as soon as we got out of the appointment room.

What a relief, next MRI check-up  in 3 months (February 2013).

Noah's Post 2nd Surgery Follow-up Treatment

The last 6 weeks have been extremely hard, with the tumor coming back so quick the doctors at Penn State Hershey recommended that we follow-up surgery with some sort of radiation treatment.  There is a treatment called gamma-knife and that sounded so obvious (from a non-doctor point of view) to use.  Three out of the four doctors recommended it, went over it with us.  But the fourth met with us, gave us a heart felt discussion on how he believes Gamma Knife wasn't enough, that we should consider proton therapy (another radiation treatment delivered at CHOP - Philadelphia).  At the end of that appointment we agreed that CHOP should review our case and we believed we were headed to Philadelphia.

I actually started this blog post before we got the final review from CHOP, I had all the descriptions between Gamma Knife and Proton, trying to figure out which treatment is best for Noah.  But after what seemed like months waiting for CHOP to review our case, came the call I wasn't expecting.  The treatment which I thought was out of the question.  CHOP IS RECOMMENDING WE DO NOTHING; or better put wait until his next MRI to decide on how to move forward with treatment.  The believe that because the pathology didn't change between the two tumors, and that each 6 months you can wait before treating with Radiation will help the brain develop.

So for right now, we are waiting 6 weeks until his next MRI.  The Hershey doctors are suppose to be reviewing what CHOP did and recommended.  And if any of the doctors reviewing his case objects, we will get a phone call and hear why.

I am actually a little relieved, Noah seems so healthy and to put him through any radiation scares me.  The point of surgery, in his type of tumor, is to remove the entire tumor and that (in theory) should be it.  I am also relieved that CHOP basically did a second opinion on his case, the reviewed everything including the pathology.  They agreed with Hershey on the pathology, which gave us some relief.

So there it is, a short version of what has been stressing us out for the last 6 weeks.  Event though the stress hasn't left, we don't have to worry if we are making the right decision on adding radiation to a benign tumor.  But we are waiting again, waiting to see if it is coming back, waiting to see if we got it all this time, waiting, waiting, waiting.

For all of you following his (and our) story, please keep us in your prayers, good thoughts and good mojo.  In approximately 6 weeks (maybe 7) we will find out if we made a good choice of waiting.

Until then...

Noah's Spinal Tap (after 2nd tumor) Results and his recovery

On September 4th Noah had to have another spinal tap to make sure the re-occurrence of the tumor didn't spread into the spine and spinal fluid.  Like every other obstacle Noah has had to deal with he just rolled right through it.  Last Friday we got the results back showing his spine is still clear from any tumor cells.  This is great news!  We are continuing on the path we thought we were headed.

His recovery from his second surgery seems to be going so much quicker.  He only missed the first day of school due to the spinal tap.  And he is still loving school, even though he can't participate in recess or gym.  He incision is looking really good, and his hair is growing over it.  With as healthy as he seems it has been difficult keeping him under control.