Things to be Thankful For

Nick was able to come home Wednesday evening.  He arrived to a yard decorated with signs, posters and balloons from all of his neighborhood friends.  It was truly a beautiful sight to see all of the kids gathered around to welcome him home.  It was even better to see the smile on his face and hear the laughter of all the kids as they all played together.  Nick had a great time and it was nice to spend some time with friends (both him and us).  Thank you to all who made his homecoming something special that we will all remember.

Thanksgiving was nice and relaxing, we went for a walk around the lake with friends and had a great thanksgiving meal compliments of Cheryl and Tom O'Neill.  It was so nice not to have to be anywhere or drive anywhere.  

While this whole experience has been difficult, to say the least, it has allowed us to reflect on just how fortunate we are in so many respects.  The love and support that we have received from all of our friends and family makes us realize just how lucky we are.  Knowing that you are all there to help with the kids, meals, rides, etc. eases our mind more than you could know.  To my colleagues at work who picked up all of my responsibilities so that I could focus on my family during this difficult time, thank you.  Being close to a facility such as CHOP, with their dedicated team of doctor's and nurses, really helped get us through the past few weeks.  

To all of you, we wish you a happy thanksgiving! 

Something to be Thankful for on Thanksgiving

The second day of harvesting went well.  The collected an additional 10MM stem cells, which is more than enough for the stem cell rescue procedure.  Nick is scheduled to have the central line removed today and if all goes well, he could be home as early as this evening, or tomorrow morning at the latest!

We are all looking forward to a few days of rest and relaxation at home.  Aside from some therapy that Nick will have to do, we should be done with procedures until December 2nd.  That starts the radiation therapy treatments.

So for the next few days, we will all be together again as a family, and try to forget about the past few weeks and just enjoy our time together.

A different Fall Harvest

Today was the first day for Stem Cell harvesting for Nick.  Stem Cells are found in your blood and as Deb said to Nick, they contain the entire "Nick Package" on them.  The goal is to harvest 10-12 million of these cells, so that during the chemotherapy treatments, they can be re-injected back into Nick to help jump start his immune system (this is called stem cell rescue).

Around 8am, Nick was taken down to sedation where he was put completely under using a combination of versed, fentanyl, and pentobarbital.  While asleep, a central line was inserted into his jugular vein.  This central line contained 2 ports which would be used later during the apheresis procedure.

Once the line was put in, Nick was taken to the apheresis room where he was hooked up to a special machine through the 2 ports I previously mentioned.  The basic premise is that Nick's blood would flow through this machine, into a centrifuge which would separate out Red Blood Cells on the bottom, Plasma in the middle, and then T-Cells and Stem Cells on the top.  This "top layer" would be siphoned off into a separate container and the plasma and RBC's would be returned back to Nick.  This continuous process went on for about 4 hours before they collected a sufficient volume of cells.  The material removed was sent to the lab for further fractionation to separate only the stem cells, the goal being 10 to 12 million.

The first harvest yielded 6.8MM cells, so we will be back at it again tomorrow.  Thankfully, the central line is still intact, so we only need to go through the collection process.  If all goes well, and they collect the necessary amount tomorrow, Nick will have the Central Line removed on Wednesday and if that goes well, we should be coming home on Thanksgiving Day (never more appropriately named)!

Nick is literally counting down the hours until he can come home.   The 6 hour pass this weekend has motivated him to do whatever he can to get back home.  The boost to his overall mental well being will be tremendous once he can get out of here for a while.  This is going to be a long road for all of us with many ups and downs.  Nick has ave already made it through the first leg of his journey and we are looking forward to a little R&R before he has to gear up for the next one.

A great but bittersweet day

As promised, Nick was able to leave the hospital today.  He was loaded up early with his therapy and then whisked out of the hospital with a box of cheese-its and a bottle of water (Deb was not going to waste 1 minute of his time away with something as mundane as lunch).  We all met up at the movie theatre to catch the afternoon showing of Madagascar 2.  Personally, it could have been high school musical or some other "chick" flick and I don't think Nick would have cared.  Just being able to get out of the hospital, breathe fresh air and not having to be poked or prodded by anyone was huge for him.

After the movie, we all came home to just hang out as a family.  Time was spent rolling around on the floor with the dogs, playing games and just hanging out.  It was so nice for Deb and I to see all 3 of our kids, at home, playing, joking and yes, even bickering again.  We enjoyed a nice family dinner (thank you to all who have provided meals to us, it was great to have a nice home cooked meal tonight without the stress of shopping and cooking) and watched the end of Penn State whooping Michigan State.

Alas, it was time for Nick to return to CHOP.  To be honest, he took it better than either Deb or I.  This would be the bittersweet part, in case you were wondering.  It felt so right having him home and oh so empty after they left.  We all can't wait until he can be home for good!

A Good Day

Well, today was a good day for the Calvaresi family.  It was nice to for once to hear some positive news for a change.

First, we received the results from the lumbar puncture and bone marrow biopsy.  Both showed no signs of tumor cells, which is a great thing.  This means that the tumor has not spread outside of the Central Nervous System.

Secondly, Nick has a day pass tomorrow so that he can leave the hospital for 6 hours tomorrow.  we are looking forward to coming home for a few hours and then going to a movie or something.  Just being able to leave the hospital after being cooped up since November 4th will be a huge boost.  I think he is most excited about being able to see his 2 best buddies (Duke and Buster).  

Rehab is going well.  Nick continues to make good progress.  He is gaining his strength back little by little.  We are hopeful that he will be able to come home for good soon.  For now we will settle for our day pass and enjoy our time together as a family outside of Children's Hospital.

ReHab and Beyond

This week began Nick's first intensive Rehab, although Monday was cut short due to some additional testing that needed to be done.  On monday, Nick had to have a spinal tap and bone marrow biopsy, neither of which are very fun.  Fortunately for Nick, he was fully sedated throughout the entire procedure.  For those of you who are interested, the spinal tap consists of inserting a needle into the space between your vertebrae in order to withdraw spinal fluid (this is usually done if meningitis is suspected).  As bad as that may sound, the bone marrow biopsy is actually worse.  For this procedure, they actually dig into both hip bones to retrieve some of the bone marrow.  Nick did really well with moderate discomfort the following day.  He still managed to get in some PT and OT on Tuesday, despite his discomfort.

On Tuesday, Nick went to be fitted for a mask that they will use during the radiation treatments.  This process consist of generating a mold of the back of his skull.  They will use this mask to mark the location of the radiation field so that each treatment will be consistent and the amount of time required to set up the radiation equipment will be minimal.  This should have been a fairly simple procedure, but somehow when they were making the mask, they managed to get it caught in his hair.  It took an extra half hour, and a lot of pulling, to free the mask from his hair.  Needless to say, he was not very happy, especially since I promised him that there would be nothing that would hurt!

Nick continues to do well with rehab.  He is working hard and continues to work even when he is back in his room.  He is making good progress, but still has a way to go.  We do know that he will remain in rehab through this weekend.  On monday he will again transfer to the oncology unit for his stem cell harvesting and be there through wednesday.  That takes us up to Thanksgiving Day, which we are hoping to be able to spend at Home!  

A Little about Nick

Since not everyone that is reading this Blog has necessarily met Nick or spent a lot of time with Nick, we thought it appropriate to tell everyone a little bit about this special young man.  For those of you that know Nick, think of one thing that best describes him.  Our guess is that most people will comment that Nick always has a smile on his face.  Whether it is playing sports, school, or just hanging out, Nick would always be smiling or laughing.  In fact, this is probably his most endearing trait.  People would always ask me, is there ever a time when Nick doesn't smile?  

Nick is a bright kid who does well in school, has a great sense of humor and a quick wit. Although Nick is a rules guy, we know that there is a mischevious side that comes out every so often.  He befriends all and is always willing to help another child.

Nick's passion is football.  While he likes to swim, play baseball and basketball, I think he would play football year round if he could.  The pictures we have include here sum it all up.  We are all looking forward to a time in the future when we can get him back up on a board, out on the field or skiing down a mountain!

We know that we are biased, since we are his parents, but Nick is a very special young man.  

In closing, we wanted to let everyone know that Nick's football team has created a website www.nicksfight.org.  The team has ordered bracelets (similar to livestrong) with Nick's name and number on them as a fundraiser for Nick.  Our family can't thank everyone enough for their concern, support and prayers.

Off to the Seashore....The Seashore house that is!

November 14

Today we got our walking papers and Nick was transferred from the oncology floor to in-patient rehab.  It is called the Seashore House (makes you think vacation,but it is no vacation) and is attached to the hospital.  Here Nick will have intensive Physical Therapy, Occupational Therapy and Speech Therapy.  We have no idea how long we will be here, but we are pretty sure it will be at least until Thanksgiving.  Our goal is to be home for Thanksgiving, but that will really be up to Nick.

This means that Nick is post surgically stable.  He is off of the steroids and only requires tylenol for pain.  It is amazing to think that a little over a week ago he had major brain surgery.  If it weren't for the PT, we would be heading home.  The body is truly a resilient machine.

Nick continues to stress his independence.  He can now dress himself (with a little help), put on his socks and shoes and even tie his sneakers!  The first time took quite a while, but he kept at it and now can do it.  This is great because his right arm and hand is still having some difficulty with fine motor skills.  He has good strength, but it is almost like his arm and hand won't do what he is telling it to do.  The more he uses his right hand, the quicker he will regain full use.

November 15

Today was Nick's first day of therapy at the Seashore House.  Since it is Saturday, the sessions are not as long as they are during the week.  Even still, Nick was pretty wiped out after his last session with PT.  During this session, he was given an evaluation to see what he was capable of doing.  He hung in there and managed to get through the entire test.  His balance is still off, but his strength is coming back.  

For dinner we decided to take and adventure and head down to the cafeteria.  This is quite a long walk and entails 2 flights of steps.  While it was very tiring, he managed to make it all the way there and back.  While at dinner, Deb and I discussed with him the importance of setting realistic goals each day.  The struggle for Nick is that he expects to be able to do everything the same way he did prior to the surgery.  While we have seen tremendous improvement each day, all he sees is failure.  A perfectly normal reaction in a 10 year old.  We all talked about this at dinner and decided to create a chart where we could put up some of the activities that he does at PT/OT and track his progress from day to day.   This will hopefully provide him with a sense of accomplishment and provide him a visual reference of his progress (or maybe it will just make mom and dad feel better).

In closing tonight, our entire family would like to thank everyone for their generous and heartfelt support!  We are truly humbled by the outpouring of support from everyone in our community, from our friends and neighbors,  all of the children and teachers at Brandywine Wallace Elementary, everyone at Marsh Creek Eagles and GEYA, and to people that we have never met, but have heard about our situation.  You are all very special and we want you to know that our family has grown a hundred fold this past week and for that we consider ourselves very fortunate.

The Daily Grind

November 13th

Today was a lot of waiting.  

Waiting for our eye doctor appointment, waiting to see if we were being moved to re-hab, waiting for results.

We passed the time looking at all of the things people keep sending in.  Nick received a basket of cards from his classmates.  These cards had us laughing all day long.  Not only were they cute, but they also included little gifts (pens, pencils, erasers, pencil sharpeners (with pencil shavings still intact) or whatever else you might find in a 10 year old's desk).  It was priceless.  At first I was worried that Nick would be upset, missing his friends, but I have not seen him laugh that hard in weeks.  It was better than any therapy.  Ms, DiMartin, please let the class know how much they helped.  It was truly a bright spot in our dark week.

Tonight was guys night.  Deb went home and I stayed overnight with Nick.  We ate tacos, played games and tried to watch/listen to the Patriots vs Jets game.  Unfortunately, the game was on the NFL network, so TV was out.  We tried streaming it on my laptop, but that didn't work well either.  We settled for listening to the game until we finally both fell asleep.  We woke up in the morning to hear that our team lost in OT, but made a big second half surge to tie the game in regulation play.

The results from Nick's VRE (Vancomycin-Resistant Enterococcus) test came back negative, so we are free to roam around now.  It is nice to be able to just stroll the corridors and get out of the room.  The X-ray results also came back fine, so at least we know that there is no disease in his bones.

We now move onto the next step of our journey which is re-hab.  We will hopefully be moving again today to the Seashore House next door.  This is an in-patient rehab facility where Nick will have 4-5 hours a day of physical, occupational and speech therapy.  He has already made great strides, but still has a long way to go.

November 11th and 12th

Tuesday November 11th

Today was our first full day out of the ICU.  Unfortunately, due to Nick's condition, we were transferred to the oncology floor.  Most of the patients here are in the similar situation as Nick.  A lot of them are undergoing chemotherapy and are therefore susceptible to infections.  Nick is quarantined to his room until some tests for viral infection come back negative, but that shouldn't be too long.

A good portion of the day today was spent having a bone scan done.  The scan itself is very similar to an x-ray.  The most difficult part was when they had to insert another IV in order to inject the radio-active dye into his system.  The reason for the bone scan is to make sure that the disease has not spread beyond the central nervous system.   It is pretty rare for this to happen (less than 5%).

By the end of the day, Nick was wiped out (as were all of us).  Today it was 1 full week from when we started on this crazy journey.  We all spent the night watching Elf which actually got a couple of laughs out of him.

It seems like our lives right now are ruled by percentages,  every decision we make, every treatment option, every test.  Nothing is for sure any more, so we take it all with a grain of salt, knowing that there is very little that we can actually control right now.

Wednesday, November 12th

Today saw much progress on the rehabilitation front!  Nick was able to have physical therapy for about an hour.  He managed to walk up a flight of stairs and down the hall, to the gym.  At the gym, they worked on eye/hand coordination with throwing balls and playing perfection.

For those of you who know Nick, he is a very active child, playing baseball, football, swimming, or just running around.  I can't imagine the frustration he must be feeling throughout all of this.  One of the exercises they gave him was to throw a beanbag into a large mesh bin about 3 feet away.  It took every ounce of strength just to complete this seemingly simple task.  After the 3rd try, the poor kid just broke down.  I am sure he was thinking, hey, 1 week ago, i could run, throw, do whatever...all i had was a bad headache some time.  Now I can't even walk without someone holding on to me.  How did this happen!  My heart just broke for him.  After some consoling and a pep talk (I told him that he needs to be able to do all of these things if he wants to get home any time soon), he set about the task of getting stronger.  Whenever they would ask Nick to do something 5 times, he would do 7.  If they told him 10, he would do 12.  You gotta love his spirit.   Later in the day when we were meeting with the doctor, Nick managed to get out of bed, walk to the bathroom, take care of business, and even wash his hands before returning to bed.  This is pretty amazing given the fact that he hadn't walked un-aided since the surgery and he still sees at least 2 of everything due to his vision impairment.  I am sure he was scared to death, but his determination kept him going!

The results from the bone scan appear normal.  There was a spot on both femurs that they believe to be scarring from football.  They took regular X-rays just to be sure.  It was nice to finally get some positive information for a change and we all sighed in relief.

So for now, we are working on getting stronger and HOME.  It is looking like we will be spending another week or two at CHOP's in-patient rehab center so that Nick can get intensive (4-5 hours a day) rehab.  We are just waiting for a bed to open up over there and then we will move yet again.....I look at it as graduating.

The end of a long, long week

I am happy to say that today was a much better day for Nick than yesterday.  His agitation and frustration, while not gone, was much less than yesterday.  I think we are all coming to grips with the entire situation.  

Today Nick graduated to the oncology floor from the Intensive Care Unit.  This is a major milestone on many fronts.  The biggest being that he is now free from the numerous wires, monitors and IV's that have burdened him for the past several days.  I can only imagine how liberating it must have been for Nick to be rid of all of these things that were an invasion of his personal space.  As a parent, this means that Nick is stable enough to not have to be monitored 24/7.  The ICU is a very difficult place for parents.  While in the ICU, patients are monitored continuously for heart rate, pulse, oxygenation, blood pressure, etc.  The problem is that every time Nick would get irritated, upset or sometimes just rolled over, alarms would start going off.  This is very unnerving at first since you automatically start thinking something terrible is happening.

Nick was able to walk a fair amount today with a little help.  I am still in shock that a little over a week ago I was cheering Nick on while he made a tackle by dragging someone down in the backfield and now I am cheering him on for taking 5 steps to the door of the room.  Deb and I keep looking at each other wondering how we got here.

So where do we go from here?   Well, here is what we know so far.  The tumor was a medulloblastoma.  It also appears that there is an additional tumor located in Nick's spine.  This now moves Nick from the average risk category to the high risk category.  Nick will have to undergo a spinal tap to confirm the tumor in his spine and a complete bone scan to make sure that the tumor has not spread beyond the central nervous system to his bones (this is very rare, but possible).

The course of treatment for someone in Nick's situation is a combination of radiation therapy and chemotherapy.  The radiation therapy will begin the week following thanksgiving and will require Nick to undergo treatment every day, 5 days a week, for 6 weeks.  After radiation therapy, he will have a 6 week break before beginning his chemo treatments.  He will receive 4 treatments in total.  For each treatment, he will be required to be in the hospital for 2-3 weeks, with one week home in between.  This is due to the fact that these treatments will destroy his immune system and he will be very susceptible to illness.  To help boost his immune system, they will use a technique called stem cell rescue.  The week before thanksgiving, Nick will spend 3 days in CHOP having stem cells harvested from his body.  These cells will then be re-introduced into his body after each treatment to help give his immune system a jump start.  Once his cell counts are up, he will be allowed to come back home until the next treatment.

So if you have followed all of this, we are all in for a very long 7 months.  I have provided you with the reader's digest version.  For those of you that are interested in more details, feel free to check out the following link.  

http://www.abta.org/sitefiles/sitePages/D3A2C571CD0CDE16C0FFE57607F22A65.pdf

So, I would say that this Blog is appropriately named.  Nick's road will be a long one, but one that will be lined with many friends and relatives cheering him on every step of the way.  Our family is very grateful to everyone for their support and love.

The Weekend

Saturday

In comparison to the rest of the week, today went by pretty uneventfully.  Nicholas has re-gained his appetite and is tolerating having the ventriculostomy being clamped.  The current plan is to have a CT scan on Sunday to make sure that the ventricals in his brain are not swollen and the CSF is draining properly.  We should know later in the day how things look.

Aside from the overall frustration, he seems to be doing well and can even muster a smile now and again.  For most of you know that Nick, it is rare NOT to see Nick smiling.   This is probably one of the more difficult things.

Today was the last football game for Nick's team.  Unfortunately, both Nick and I were not there to see the team play a tough fought game in the rain.  The team fought hard, but came up just a little short on the score side, but not on the courage end.  I have not yet seen the tape, but I hear that the team all wore #27 of their helmets for their teammate that could not be there on Saturday.  What a great group of boys!  We are truly a TEAM.

We spent most of the evening together as a family at CHOP.  Samantha gave Nick a rosary that Sister Mary Ellen and Sister Steven Anne gave to her for Nicholas.  Nick took it in his hand and held it for a moment and then put it around his neck and held onto the cross.  He wore that rosary for most of the night.  God surely must have been smiling down on him at that moment for it was truly precious.  It is a memory that I will carry with me forever.

Sunday

The good news is that they were able to remove Nick's ventriculostomy tube today.  If all goes well, and he does not have any more headaches, that part of his ordeal should be over.  If not, he will need to get a shunt put in which is a permanent tube that will drain the fluid from his brain into his abdomen.  We are praying that this is not necessary.

I think that the enormity of this week's events have finally caught up to Nick.  Today was his worst day yet.  He seemed to be in a lot of pain (both physical and emotional).  Removing the tube in his head, while a positive step in his recovery, was probably the final straw in what he can only see as a constant violation of his body.  That coupled with seeing double and not being able to walk on his own can only make for feelings of frustration and anger.  I just spoke to Deb and after a long emotional day, he is finally resting.  We are hoping that tomorrow will be a better day.

We have no idea when Nick will be coming home, but we are hopeful that it will be early this week.  Tomorrow we will be meeting with the oncologists to talk about what lies ahead for Nick.  We do know for sure that the tumor was a medulloblastoma.  These tumors are always malignant and therefore will necessitate further treatment.  We do not yet know exactly what that entails, but we do know that it will not be an easy road. 

We thank everyone for the thoughts and prayers and as someone said to me earlier today, please continue to storm the heavens with prayers for Nick.

Day 3 - Getting Stronger by the Minute

As each day goes by, Nick is getting stronger.  Today he was able to sit up in bed, get out of bed and into a chair for a short period of time.  The best news was that his IV was removed and he could start eating again!  He started out with some cheerios, and moved right on to pasta, turkey and mashed potatoes.

The surgeons seem to think that Nick is doing quite well.  Today they clamped off his ventriculostomy and so far so good.  If his intracranial pressure remains stable and his head doesn't hurt (at least not in the front), then hopefully tomorrow they will do a CT scan and remove the drain.  We are keeping our fingers crossed.  Getting this tube out is the biggest hurdle to getting Nick home!

One of the side effects of this type of surgery is something called cerebellar mutism.  This can cause some trouble speaking, irritability, and some fine motor problems.  It appears that Nick has a mild form of this (the irritability part for sure, but then again, who wouldn't be pissed off).  The good news is that this is a transient condition that usually clears up quickly.

We did get a smile out of him today though.  Mary Ferrer and Karen Ahern gave nick a personalized T-Shirt with a picture of Duke and Buster on the front and a picture of the 2 of their backsides on the back.  He had to laugh at that.  We laughed at the image of Karen and Mary trying to take the pictures!

Nick also had a visitor, Ryan Haney, who is no stranger to CHOP.  Ryan is the son of one of my co-workers and has Crohn's disease.  It turns out that Ryan is on the floor right above us for a couple of days and was kind enough to come down to visit.  We wish Ryan and his family all the best.

Day - 2 The aftermath of surgery

Nicholas came through the surgery remarkably well.  He was back in his room at around 7pm.  It did take him a while to blow off the anesthesia and for the first couple of hours there was some concern since he wasn't talking or responding.  In some cases like his, there is a condition called cerebellar mutism.  In these cases, speech and motor functions are delayed.  A CT scan was ordered and he appeared to be fine.   At some point he began to scream in pain.  I have to tell you what a strange feeling it is to be relieved when you hear your child scream, but it was one of the sweetest sounds I will ever remember.  He was able to verbalize where it hurt which was great.

The night passed very uneventfully (thankfully) and we were all able to get a few hours of sleep. While Nick was still in quite a bit of pain,  the staff was able to keep on top of it with fentanyl every few hours.

Throughout the day, we began to see noticeable improvements.  His speech was becoming much better and he was much more alert as the day wore on.  One of the problems with brain surgery is that it is pretty invasive and the brain is a very delicate organ.  Because of the trauma to the brain and the swelling from the operation, one of the issues is a transient vision problem.  Eye control is very difficult causing blurred and/or double vision.  Because of this, Nick spent most of the day with his eyes closed, I am sure because it made him nauseous.   Who wouldn't be if they had to look at 2 or 3 or me all day long.  The doctor's said that this is very common and should clear up in a day or 2.

Nick's motor skills all seem to be fine.  He is able to grasp things, lift his arms and legs and he was even able to sit upright for a moment later in the day.  We were thrilled with all of this because with Brain surgery, you never know.

A follow up MRI was done later in the day to compare to the one done on Tuesday.  According to the doctor, everything looked great.

As for the future, tomorrow we will look forward to Nick getting back to eating with some clear liquids and hopefully even get him out of bed and into a chair.  The other big milestone will be to see if they can remove the ventric.  This is a thin tube that has been inserted into Nick's skull to drain the cerebrospinal fluid from the brain until the swelling has gone down.  With the tumor removed and the swelling down, the hope is that the CSF will be able to flow freely between the brain and the spinal cord without pooling in his brain again.

Lastly, we also await the pathology report on the tumor itself.  The type of tumor and staging of the tumor will dictate the future course of treatment for Nick.  We are hoping for Friday, but we are guessing that Monday will be more likely.

I am home tonight with Sam and Peter, while Deb is staying with Nicholas.  The kids have a lot of great questions and Deb and I are doing everything we can to explain the entire process.  As you can imagine, this is a lot of information to process in a short period of time, but they are doing well.

The amount of support and well wishes are truly overwhelming and we all can't say enough how fortunate we are to have so many friends and relatives who are willing to help out.  We know that everyone is shocked and wants to help in some way.  Right now, Deb and I are trying hard to keep the kids lives relatively sane and really feel that now, more so than any other time, we need to be together as a family.  The road to recovery for Nick is sure to be a long one and we both know that there will be ups and downs along the way.  It will be during these times that we know we will be needing help.  As for updates regarding Nick, I felt that this would be the best way to communicate.  For one, it allows me to get my thoughts down on paper which is somewhat therapeutic in and of itself.  Calling everyone daily is just not feasible and emailing everyone daily seems too arduous.  I hope to post daily reports of Nick's progress and hopefully have them become far less frequent (or better yet, just end).

Once again, thank you all for your generosity, well wishes, prayer and support.  We need it all right now.

The C's

The Craziest 24 hours of our lives!

s most of you are aware, Nick has been sick off and on for a couple of weeks.  He had been complaining of headaches and some vomiting.  This would come and go.  At first we thought it was just a virus, but when it didn't resolve, we moved on to a mild concussion from football.  Never in our wildest imagination did we expect this.

On Tuesday, we took Nick to the CHOP facility in KOP for a CT scan.  We expected them to tell us that he had a mild concussion.  The CT scan showed something in the back of his head.  They immediately scheduled an MRI and off we went to the city.

When we arrived at CHOP, we were whisked through the ER (our first indication that something wasn't right).  During the admission process I took a look at the computer monitor and for the first time saw "Nicholas Calvaresi - Brain Tumor".  I think that is when the gravity of the situation truly hit me.

An MRI is a diagnostic machine where the patient lies down in a long tube and a large magnet rotates around the body taking images of the brain and spine.  The entire process takes about 2 hours.  Fortunately, for Nick they have a great system where the patient can wear goggles and head phones that allowed him to watch the movie Rudy.

The MRI confirmed our worst fears.  Nick had a 5cm by 4cm tumor at the base of his brain.  The type of tumor is a medulloblastoma.  This type of tumor is one of the most prevalent in children.  The symptoms are headaches and vomiting and it is a fast growing type of tumor.  We have no idea how long the tumor had been growing for, but it finally grew to a size that began to inhibit the normal flow of cerebral spinal fluid from the brain to the spinal cord.  This resulted in additional fluid building up within Nick's brain and this is what caused the headaches and vomiting.  The actual term for this is hydrocephalus.

Nick was admitted to CHOP and his surgery was scheduled for the next morning.  It is hard to believe that all of this happened within a 5 hour span.  It felt like staring into the light of an oncoming train and not being able to move.  Nick spent the remainder of the day being poked and prodded by numerous doctors and nurses.  There was the neurosurgeons, neuro-oncologists, anesthesiologists, residents, etc.  The care at CHOP is fantastic.  They have a team of child life specialists who help educate the families of patients regarding the various procedures.  They show them pictures of the machines, explain about IV's and most importantly control the playstation games!

Nick held up well during all of this.  His biggest concern was whether or not he would be out in time to play football this weekend.  His surgery was scheduled for 11 am the next morning (24 hours after his original CT scan).  The surgery lasted just over 6 hours.  Before they could begin with the surgery, they needed to insert a tube into his skull to begin draining the excess fluid and remove the pressure on his brain.  Once this was accomplished, they could then begin the actual surgery.  The operation entailed removing some of the bone in the back of his skull, allowing them access to the tumor.  These types of tumors can be tricky since they can be attached to the cerebellum.  

Nick came through the surgery well.  He is still in a lot of pain, but he is able to speak and has good motor coordination.  We are very hopeful that things will be ok.  It will be at least another 4 days before we come home, but each hour he is getting stronger.  Deb will be camping out at the hospital most of this week.  Sam and Peter are doing well and the Oates family has doubled in size.

Deb and I appreciate everyone's concern and well wishes.  I am sure a lot of people were nervous and we apologize that we could not talk to everyone.  The speed and enormity of the situation made it extremely difficult for us, but it is great to be able to give everyone a positive update on Nick's condition.  

Regards,

David  and Deborah