I had to sneak up behind a chair to capture Simon singing.  He's trying to impersonate Chris Tomlin :o)

Nolan is continuing to do really well and is working with the homebound teacher now.  I think he's loving being at home a little too much...lol  He will go back for more chemo on November 2nd.


Brittany

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.