Everyone Is Home!

One week ago. That is when Sam had his last surgery. Today, Sam, Nathan and Shelley made it home from Hobe Sound/Miami. Sam had is one-week post op visit with Dr. Tse (pronounced "see") on Monday morning. The Dr is very happy with his results and Sams recovery.

Note: Sam's eye/plastic surgeon's name is Dr. Tse. That is like having a dentist named "Dr. Clean" or a pulmonologist name "Dr. Air." Very appropriate if you ask me!

Anyway, a third surgery is being planned, but not for a while. There is no rush. It will be another cosmetic surgery, to lift the eyelid a bit more and to re-crease the seam where the first surgery took place. My guess is that, especially after reading the surgical report, that the first surgery was very traumatic to the lid. The neurofibroma was rather large and involved.

So for now, Sam is home. He goes back to school tomorrow but cannot participate in PE for a couple of weeks. We have to be careful about the sutures clean and to prevent any infection. No rough-housing with dad or Nate. Bummer.

I cannot say enough about how tough Sam is. Remember, he has been getting poked and proded by doctors, techs, assistants, nurses, mom, dad, you name it, since he was 3 months old. He wears a patch over his good eye every day to help keep the right eye functioning and he's been doing that for years! He never complains about being in any pain or discomfort or anything. It is amazing how tough he is.

Please keep Sam in your thoughts and prayers. We appreciate the support and kind words from everyone so far. Please keep them coming!

Post Op #2

Well, surgery number 2 (for the orbit/eyelid anyway) was a great success. Let's see. We arrived at Bascom-Palmer at 5:50am on Tuesday, October 27, 2009. By the time Sam was admitted and repeatedly checked over, he was in the surgical suite by about 8:30am.

Dr. Tse came out to see us around 10:00 to show us some great digital pictures and to explain what was done:

Sam had a portion of his right eyelid clipped out to remove some excess eyelid. Remember, five months ago Sam underwent a huge tumor debulking surgery. After that surgery was complete and he had healed, the eyelid was very floppy and loose. It was also blocking some of his vision. Tuesday's surgery was planned.

So a small incision was made up the eyelid. The lid was then pulled over to check for redundancy and a measurement was taken. From there, the surgeons removed the measured amount of eyelid and then closed the incision very delicately.

Sam came out of the surgery suite around 10:30 or so, drunk of course!!! I wish us adults could buy some of the stuff they use to knockout patients. Well, it looks like fun but I'm sure it is not, especially the hangover.

He had a rather larger pressure bandage on that gave him a fit. He did not like it and fought it at times; he actually grabbed it and tried to pull it off on the way home.

We were discharged from the hospital by noon. But first we had a great surprise. Daniel Graeff, one of the drivers from the FarnbacherLoles Racing team stopped by to cheer up Sam! Smiles were plentiful to say the least.

Sam met Daniel in July at the Brumos Porsche 250 race in Daytona. Daniel really took to Sam and lead him around, showed him the race car, explained things to Sam, and really got down to his level. So to have Daniel show up at the hospital, to take time out of his day and make Sam smile, that was the best. Those small things (as Judy Mader reminded me today) are what makes life so special.

Anyway, after a long two hour drive back to Hobe Sound, the day was nearing an end. Sam was uncomfortable to say the least. The patch was his nemesis. He did not like it at all.

That night he slept in the bed that Shelley and I typically share. I kept an eye on him through the night to make sure he didn't pull that patch off. In case any of you may not have had the experience of sleeping in the same bed as a five year old, here is a warning: they kick... a lot.

Today Sam was in a great mood. He knew the "bad patch" was coming off. So after being awake for, ah, 20 minutes, he demanded that the patch come off. That was hell! The tape is very strong and there was a lot of screaming, crying and kicking done by Sam. But when the patch was finally off, I showed it to him and everything just stopped. Wow.

Sam's wound looks great (for being a wound). The swelling is minimal and the discoloration is moderate. I'm sure it will change over the next few days but he'll be fine. He was even wearing his glasses later on.

I'm now back in Ocala. Sam has a follow-up appointment on Monday then they will come home on Tuesday, the 3rd. What a couple of weeks this has been.

We are very thankful for the care Sam receives. Dr. David Tse at Bascom-Palmer is just a part of Sam's total care. Sam sees at least three other specialists there and then about six specialists up at UAB. We travel a lot, but when you need the best for your child, money and time is no object. Just do it!

Fund Raising Update 1

Wow! In two weeks time friends and families have come up big as we hit 7% of our fund raising goal.

We are fully aware that these things take time and that times are tough for people to donate anything these days, but think about this:

Beer money

• If you had one beer at a bar, it could cost you $4 or more.


• Add a tip and just round it up to $5 per beer.


• Have three beers per visit and rack up a $15 tab.


• Maybe you really like the bar (or really don't like going home) and go there say three times per week.


• Now figure visits times cost per visit equals $45 per week.


• Over a year's time you'll spend $2,340 at this bar.


• Ten percent of that annual tab is $234.


• One percent of the annual tab is $23.40.

You can afford to donate one percent of an estimated bar tab.

Visit https://www.active.com/donate/racing4research2010/samcouillard and make it happen.

Fuel the Cure!

#85 CTF Porsche 911 - Daytona 2009

Way too cool watching the CTF car go by you at 150mph only 50 feet away.

Television cannot do racing justice.

Sam's Fund Raising Efforts

We will be in touch with some local (and I mean Ocala local) race teams to set up an event out at the Ocala Speedway, all 3/8 mile paved track.

The top car a few years ago was the Flying Tomato. It was an Orange Pinto.

Stay in tune.

2010 NF Heroes Page

Sam's 2010 NF Hero page is up. Please make a small contribution to this reseach fund raising campaign in Sam's honor. Every little bit counts and no donation is too small.

Thank you!
https://www.active.com/donate/racing4research2010/samcouillard

10 Days After...off to the RACES!

The Children's Tumor Foundation called and asked if we would be interested in heading over to Daytona to be a part of the CTF team as they enter the Brumos Porsche 250 Grand Am race. What did we have to do? Show up!

What a great experience for Sam (and not that shabby of one for me and Shelley either!). We heading over to the coast, dropped Nate off at Andrea's house for the day and then headed to the track. We walked... a lot. Then Michelle Marden with the Farbacher Loles team picked us up in a golf cart and off we went, right to the team's garage.

From there the CTF drivers (Daniel Graeff and Ron Yarab, Jr.) pretty much took over. They got down to Sam's level and just showed him everything about the car. Sam is a NF Hero and his name actually appears on the car (under the 8 on the passenger side). He got to sign his name on his name on a race car! How cool is that?!

We also met Lilly Ann Brooks, another NF Hero from Orlando. She is just great and she and Sam warmed up quickly.

After taking care of the car stuff, we headed to the Fan Zone to meet a Nationwide Series Nascar driver Ken Butler III who has a friend with NF. We were able to tour the Fan Zone for a while, scope out some Sprint Series drivers and garages. Sam even scored a lug nut from the #2 Miller Lite car!

The next day we rushed back to the track and spent some time in the Fan Zone again, walking around, seeing sights. It was hot so we headed back to the stands and caught the start of the Grand Am race.

It was really cool to see the CTF car, the one Sam sat in, signed his name, met the drivers, all that stuff the day before, zipping around the track. What a day. What a weekend.