G-tube surgery

I knew I wouldn't be able to blog everyday :)  Last week was so hectic and I'm enjoying the peace!!!!

More into Nolan's cancer story.  After months of Nolan vomiting the nasal feeding tube and having to make dozens of trips to Atlanta to have another one shoved down his nose.  Doctors, nurses and I all decided it was time for something more permanent.  Nolan had a GJ tube surgery on May 19, 2010.  Nolan would have surgery and two days later get 3 doses of chemo :(  We had to do it this way because his counts were the highest at this time and he would have at least 7 days to recover before they started dropping again.

                                               Let's say goodbye to this stinkin' tube!!!!!

First picture  "tubeless"  I love seeing him smile :)  You can see where the tape was causing his skin to break down.  It was terrible!

Nolan showing off his new tube.  Nolan's first tube was called a peg tube and is used during the healing process.  He had small tube that was run through the g-tube that would bypass his stomach and go right to his intestines(J tube).  We "thought" Nolan wouldn't be able to throw this tube up.  Not likely.  Nolan still continued throwing the tube up every week.  There was one particular time that he threw the tube up and it came up through his stomach and was hanging out of his mouth.  I drove all the way to Atlanta with Nolan choking and gagging in the backseat.  The ER doctor had never seen anything like it.  The vomiting was just so bad.  Nothing seemed to help. Nolan kept the peg tube for about 12 weeks before switching to his mickey button.  Nolan to this day still has his mickey g-tube.  NO MORE J TUBES!!! YAY!!!

This is Nolan's mickey tube and what he currently has.  We love how low profile it is.  No one would ever know.

Friends of Jaclyn Foundation and The Georgia Tech Tennis team

I wanted to share with you some of the wonderful foundations that have helped us out.  One is the Friends of Jaclyn Foundation.  They place children that have been diagnosed with a brain tumor, with a college or high school sports team.  The child and the team become friends, and are able to show each other support.  Nolan has gone to games and cheered the team on and the team has come to the hospital and cheered him up.  The bond is Amazing! Nolan's team is the Georgia Tech Tennis team. WOW!  Friends of Jaclyn couldn't have picked a better team!! Nolan loves the guys and the guys love Nolan.  He's always begging for the next opportunity to see them.  Also if you are wearing a Georgia Tech t-shirt be prepared for Nolan to bug you about how wonderful his team is :)  He is a BIG Georgia Tech fan!

He  was at camp this summer and was approached by a UGA football player and was asked if he liked the bulldogs.  Nolan's reply was, "NO way!, I like the yellow jackets!"  He's hilarious!

Here's his first team photo.  I still remember this day so well.  Nolan was watching them practice from the stands when Magin approached him.  Magin and Nolan started tossing the tennis ball back and forth.  Right then I knew this was going to be great!

Nolan and Juan sharing a moment.  So sweet :)

Nolan with Buzz, Ryan and Miguel

Nolan and his team mate Guillermo

End of season party with the team

Nolan with Louie Giglio and Chris Tomlin.  These guys left a big
impression on Nolan.  Coach Kenny invited him to Passion City Church.
Now he looks forward to it Every Sunday

Nolan, Louie, Chris and coach Kenny

Nolan with Coach Kenny at Passion City church.
Nolan looks up to Coach so much!!

Nolan during one of his practices with coach Kenny

Nolan getting some tips from coach Kenny

Nolan with Coach Kenny and coach Conor

The team visiting Nolan and his friends at the clinic.
pictured are Eliot, Nolan, Scott Story, Bo Story, Coach Kenny and Vikram

Thank you guys for being there for Nolan.  He loves y'all so much! To learn more about Friends of Jaclyn, check out their website:  www.friendsofjaclyn.org

Some of the MANY side effects of Nolan's chemo

Sorry for not being able to add anything yesterday.  It was a tough day for all of us.  I wanted to go into detail about Nolan's hearing loss and side effects of chemo.

The main cause of Nolan's hearing loss is from a chemo called "cisplatin"  Bad stuff!  He has sensorineural hearing loss.  Basically the chemo damaged the hair cells in his cochlea and it is permanent.  He can't hear any high pitch sounds.  A lot of people say," isn't that good?"  Imagine for a minute if someone took all the f's,  k's, t's and s's out of your sentences?  It would all sound like, blah, blah, blah...lol  Those are the sounds Nolan can't make out.  He wears hearing aids and most children over time with this type of hearing loss will continue to loose hearing :(  We've got to find a better cure!  Everything that has saved Nolan's life has caused damage in other parts of his body.

Nolan will continue having his hearing tested every 6 months and right now he's having fun picking out all the cool colors :)

Another side effect of chemo was the neuropathy I had mentioned in an earlier post.  To this day Nolan still has problems with his toes.  He lost feeling in his feet for a long time and still is unable to pick his toes up when he walks.  He wears braces to help give him a normal walking motion.  The braces pictures above are his older ones.  He now wears kiddie gaits.  They look like he's wearing shin guards for soccer, but they go under his feet and give him the extra boost he needs.

Another side effect of chemo is low blood counts.  Nolan has had numerous, numerous blood and platelet transfusions!  Thank you, Thank you to all who donate.  Nolan's blood type is B positive.  So that's our Motto: to "B" positive :) I love it!

Nolan's 4th brain surgery

Please note that I am re-telling Nolan's story to raise awareness for Pediatric Cancer.

It seemed every scan revealed something bad.  This MRI showed another brain bleed.  This time on the other side of Nolan's brain.  Thankfully this time his counts were good and Nolan's neuro-surgeon was able to drill what they called a burr hole.  He then placed an EVD (external ventricular drainage) to drain the blood that was collecting in his brain.  Nolan has had two EVD's and they are like torture!  You have to remain at a certain angle for HOURS!  What was worse is when Nolan came out of surgery he was ballistic!  Come to find out they forgot to give him pain medication :(  I was so upset!  How can you forget to give someone pain medication after they just had a hole drilled in their skull?  With lots of morphine we were able to get Nolan's pain under control and get him to be still.

Nolan during one of his breaks.

I loved to see him sitting up and smiling :)

The blood they drained off of his brain.

Nolan getting a blood transfusion.  Hanging on the IV pole by his bag of blood is his Beads Of Courage.  They went everywhere with him.

Nolan pretty much had to stay in a small room on the neuro floor.  These clowns came to cheer him up!

Nolan recovered from this surgery and still didn't miss his next dose of chemo.  He has always been able to make remarkable progress!  He likes to amaze people...lol

PICU/complications with chemo

We learned very quickly not to expect inpatient chemo to be the 3-4 day stay they told us about.  Nolan would develop some complication every time that had to be resolved before going home.  After the second round of chemo we realized he was developing a strange reaction to Cytoxan (also known as Cyclophosphamide, but I prefer not to spell that).  After receiving the dose of Cytoxan Nolan slept for about 20 hours.  I brought to the doctors attention that I had been unable to wake Nolan and he was not urinating at all.  All This toxic chemo and heavy IV fluids was just sitting in his body.  Nolan went another 10 hours of sleeping before they got really concerned and decided to do labwork.   The labwork revealed Nolan's sodium levels were dangerously low.  If they didn't get his sodium levels up soon, he would start to have seizures.  They rushed him of to the PICU (pediatric intensive care unit) so they could gradually bring his sodium levels up.  The picture above is him starting to wake up and feeling a little better.  He has his Beads of Courage hanging in the background and his favorite Aflac hat sitting beside him :)  He would continue to need sodium every time he got chemo to avoid having this reaction.  He also lost his body's ability to regulate Potassium and Magnesium levels.

Nolan is feeling so much better now and wants to go home!

life changing

One of the first things you have to do after surgery is eat.  Eat and you can go home.  Every time Nolan would try to eat after this surgery he would vomit.  This was the beginning of Nolan's eating problems.  I thought this was temporary, it would go away.  7 days later Nolan still couldn't keep anything down.  Nolan can't loose weight, because then we would have to start worrying about toxicity.  The more weight you have on your body, the better you handle chemo.  We were all still in hopes it would get better, so the doctor suggested an NJ tube.  This tube would go through his nose, bypass his stomach and go into his intestines.  This was one of the most challenging things we would have to go through.  Me and 5 other staff members literally held him down while a radiologist shoved a tube down his nose.  Nolan was screaming!  The doctor had to make sure this tube was placed in his intestines, so while she was running it down his stomach she watched on the x-ray machine for proper placement.  I was in tears, Nolan was in tears!  I just wanted to make everything ok for him like most mom's but it was out of my hands now.  I was no longer in control.  I knew God was trying to teach me who is in control and this was the biggest test.  He cried himself to sleep that night and I couldn't help but feel I broke his fighting spirit.  Nolan would show us who was boss.  He got use to the backpack he would have to wear that contained his feeding pump and special formula.  We got to know radiology very well at Scottish Rite.  Nolan would vomit the tube up one to two times a week.  With this particular tube, it had to be inserted by a radiologist.  So, to Atlanta we would go every week to have the tube replaced.  Nolan would vomit with such force it came out his mouth once.  To this day Nolan is still about 90% tube fed.  Still has serious vomiting issues and is on several medication to control his urge to throw up.

Race Day & Emergency Brain Surgery

Nolan with Kasey Kahne

 Nolan had this dream of meeting Carl Edwards.  So after his second round of chemo our good friend Marta took Nolan up to the infield at Atlanta Motor Speedway.  The drivers would walk from their RV's to the garages and stop to talk to him and sign his hat.  Unfortunately before Carl Edwards came out Nolan had to go to the restroom :(  We rushed him off, but he couldn't get back in time.  All these guys are on time schedules and can't wait.  Nolan hung around until he couldn't handle it anymore.  Nolan was still extremely fatigued and just couldn't handle being out for too long. So we left in hopes of maybe later...

Nolan with Richard Petty

Later didn't come this time.  Nolan woke up the next day with the worst headache ever.  He was grabbing both sides of his head and screaming.  I rushed him to the ER in Atlanta.  They did an emergency CT scan which revealed a major Subdural Hematoma.  Nolan had so much blood in his head, his entire brain had shifted and one of his ventricles had collapsed.  The worst part of all this was Nolan had no ANC (no immune system).  We couldn't wait for his ANC to rise, he needed surgery right away.  The risks were horrible, but Nolan made it through.  They ended up putting another shunt in to drain the blood into his stomach.  Keeping everything on the inside would reduce his risk of infection.  To this day Nolan still hast two shunts that drain his CSF fluid into his stomach.

scar

This is one of Nolan's incision after surgery.  He also had one on the other side of his head and across his stomach (they had to go in his stomach and change a valve on his shunt)

This is our friend Walter from the races.  Everyone was so touched by Nolan's story and wanted to do something special for him.  They all pitched in and bought this Aflac helmet for him and made sure Carl Edwards signed it.  Nolan was so in LOVE with this helmet and still is!  It's stays safely tucked away.

First post Radiation MRI and First inpatient chemo

Nolan in the sedation room before his first MRI after radiation.   It had been six weeks since having his port accessed and he was really nervous. " Casper"( Nolan's favorite therapy dog) came in the room with him and was able to calm him down.  


After 30 days of radiation and 35 doses of chemo Nolan's MRI showed a 75% reduction of cancer.  I think everything was just now soaking in.  I went through shock, fear, anger, peace and now what ? When Nolan was diagnosed he had a tumor in his brain the size of a golf ball, two tumors in his spine and a sugar coating  of cancer (also know as  leptomeningeal disease) throughout his spine and brain.  Nolan's prognosis was 60% if he responded well to treatment.  The more I learned about Nolan's cancer, the more I realized just how bad this really was.  Medulloblastoma patients have a better prognosis if cancer is caught before it spreads and main tumor is fully removed.  He also got the dreadful pathology of it being Anaplastic.  The Anaplastic type is harder to treat and sometimes spreads more rapidly.   We never lost hope that Nolan could beat this!  Nolan is a fighter!

This picture was taken during Nolan's 1st round of inpatient chemo.  The first round of chemo is the only one I considered a good one.  Nolan always got some sort of complication after every round of chemo :(  This is the famous "I love my oncologist" t-shirt.  It got a lot of laughs!  You can see his face is still swollen from the steroids and he has his  puke bucket sitting right beside him :)  Nolan would get a 6 hour infusion of a chemo called cisplatin, a 1 hour infusion of a chemo called cytoxan and a push of vincristine.  All of them had to be flushed out with heavy IV fluids.  They basically put this poison  in him and had to flush it out before it could cause any damage.  Really? seriously? Do we have to do this? ugh!

How I dreamed of seeing this again!  This picture was taken of Nolan before diagnosis.  He loved to climb trees, skateboard and do tricks with his bike.  This child was fearless and loved to seek danger.  I'm not sure I missed the danger part but seeing him unable to do all that he loved broke my heart.  He still to this day can no longer skateboard or climb trees but has had major improvement and is able to walk again and for that I'm so very thankful!

Nolan was given a six week break after Radiation.  It was really important to rest and enjoy as much as possible.  Make-A-Wish sent him to Disney world.  It was the coldest weather Florida had seen in 20 years...lol  Nolan was weak and very fatigued but we made the most of every moment.  Little did we know exactly how hard the next 6 months would be.....

Nolan in the cockpit of an Air Tran plane.  On his way to Disney :)

Mickey and Minnie came to visit the kids at Give kids the world.
www.givekidstheworld.org

Nolan feeding the dolphins with him mom, brother Charlie and uncle Blake.  He wanted to swim with them...lol

Nolan had been on steroids for 3 months now.  We had to increase the dose so he could get on the plane for Disney World.  When we got back he had gained 10 lbs and couldn't fit into his clothes.  Steroids are used alot in brain tumor patients to reduce swelling in the brain.  Here Nolan is with his neuro-oncologist Dr. Aguilera.  She has become more than just his doctor.  Dr. Aguilera and the BT nurses Jennifer and Melissa have become our family.

September is Childhood Cancer Awareness Month

This is a picture of Nolan on a good day right after he lost his hair.  He would loose his hair many times and eventually loose his eyebrows and eyelashes.  I just love his big brown eyes in this picture!  

Every day before radiation Nolan would get a 15 minute infusion of a chemo called carboplatin.  Once a week during radiation he would get a push of another chemo called vincristine . We later learned vincristine was damaging his nerves .  For six months he couldn't feel his feet.

Nolan's first Flashes of Hope picture.  This was taken during his radiation days in December of 2009

I decided to do a short picture synopsis of Nolan's story to raise awareness for pediatric cancer.  Nolan has been fighting Anaplastic Medulloblastoma (a type of brain cancer) for 23 months now.

This picture was taken days after his first brain surgery.  He lost his ability to walk, sit up, hold his head up, move his left arm.  It would take 18 months and extensive physical therapy to re-learn how to walk.  Nolan still to this day does physical, occupation, and speech therapy.  We have also discovered how wonderful karate is for his hand/eye coordination and balance.  He loves it and everyone is amazed at the difference it has made :)

Nolan had 30 days of radiation.  They made a mask of his face and it was bolted down to the table to assure he wouldn't move.  Nolan was on the border of needing sedation but we were able to convince him with $1 a day to not move a muscle   He received the maximum dose of radiation he could get to his brain and spine.

After 30 days of radiation he was able to take his mask home :)  Here he is pictured with the best radiation tech ever Greg. He is so good with the kids and Nolan loved his impression of "the duck"