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"

Abby is with Jesus.  She battled Medulloblastoma for 5 years.  Her Mom said, "Heaven is now Abbylicious"

http://www.carepages.com/carepages/AbbySmith12

Such a hard week.  Now the news Piper as relapsed and has a long, hard road ahead of her.  Please continue to pray for these families.  We have all become like on big family and when something happens we all are so deeply affected.

I cling to this:

So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand

 Isaiah 41:10

Visit to the Georgia Peach Farm with the Kilby family

Jackson Luke with his peachy :)

Rylea

Simon

Nolan watching the peaches on the conveyor belt

Mackenzie

sorting through the peaches

Jackson Luke

Nolan

Charlie

Simon

picnic lunch

this cute dog decided to join us and finish off what Nolan wouldn't eat 

Jackson Luke says, "NO MORE PICTURES!" haha

Nolan showing Luke the peaches

ready to go to the store

Mrs. Heidi showing Simon how everything works