Football Doubleheader

As expected, Carter is loving football season. He moved up to the next age group this year and is playing for the Chargers. Daddy is an assistant coach and both are enjoying the practices and games every week.Last weekend was a washout, so this Saturday was a doubleheader.

Carter doesn't really have a favorite position and loves playing both offense and defense. He was a flag-grabbing machine yesterday. He kept the pressure on Jaxson the entire half.

with tackle after tackle...

He had a few receptions come up just short, but finally connected with the QB...

and took it all the way in for a Touchdown!

In the end they lost the first game by one point and won the second. Great game Chargers! You guys all worked hard and gave great effort.

And Saturday night we enjoyed a great NC State football game on TV. Coach O'Brien has proved yet again that when you need a done right, overnight- call in the Marines. As a USNA graduate a retired Marine, he takes leadership and character very seriously. He brings in Navy Seals and Marines to speak to his players. Apparently the Marine last Friday night made a difference because NC State exhibited tremendous effort, strength under pressure, and teamwork to upset #3 Florida State. Go Pack!!!

CureSearch Walk 2012

This Saturday was our 2nd annual Triad CureSearch Walk. We are passionate about helping to find new, better, and safer treatments for childhood cancer. The only way this is going to happen is through targeted research and that takes funding.With CureSearch, 95% of the funds raised go directly to research. In FY 2012 they are giving $5.5 million dollars directly to research.

We were blessed with a gorgeous day at the park for the event. The kids had fun playing games...

and having their faces painted...

It was such a joy to paint sweet, little Anslee's face! She reminds me so much of Julia when she was in treatment.

Getting ready to kickoff the day...

So many family and friends here to support and honor their cancer warriors...

Dr. McLean is a passionate supported of CureSearch and all the amazing work they are doing for our kids and their support for Brenner's research (and all the other COG hospitals.

Julia always loves a chance to see him and give him a hug...

A moment of silence and song for all our many angels. There will always be too many, too many lives cut short, too many parents without their children, too many siblings alone, too much suffering. For each of them we carry on the battle in search of cures.

Each of the cancer warriors was recognized on stage and received their medal.

Little Joseph stole the show. He had a lot to say and charmed us all.

So proud of all of these kids and the battles they represent!

Then it was time to walk the two miles to honor, remember, and reflect.

Julia shocked us all. She has come so far. The first year she had just had surgery and didn't walk any of it. Last year she walked half of the course and this year she ran!!

We are so thankful for how far she has come. Such a gift! She did the entire course with her little friend Theresa whose brother Robbie recently died from his cancer at the age of 7. It was such a hard day for all of his friends and family. As they walked they talked about the kids they both know who have died. They talked about heaven and they tried to figure out why Julia gets a chance to live and still be here and Robbie had to go to heaven. As moms our hearts broke for both of them having to wrestle with such difficult issues. Our one wish is for a world where kids can just be kids and play with their siblings and friends without death always looming in their hearts and minds. We have to make a difference.

If you would like to help our team raise money for research, the donation link will remain open through the end of November. You can feel confident knowing that your money is making a difference in the lives of children right now. Children who have a very simple wish. They just want a chance at life and growing up. Click here for Team Julia.

Dixie Classic Fair!

Every year we look forward to the fair. It is our annual celebration of another year OT (off treatment) for Julia. After a week full of hospital appointments we can't wait to celebrate N.E.D. with a day long trip to the fair. This year did not disappoint! God gave us bright sunshine and clear blue skies.

The pig races were a big hit this year. We actually watched them twice!

We watched two other great shows and then visited the Percheron horses. They are huge- standing over 18 hands tall!

Left Julia just itching to ride a horse. I guess a pony will have to do. Julia loved little Chicco...

Then we headed to the petting zoo...

 

A few games for Mr. Competitive...

A visit with the Batmobile...

Yummy treats...

And as many rides as they could enjoy all afternoon...

Their favorite by far was the bungee jumping...

Carter mastered double flips!

So thankful for an amazing day! Thanking God every day for the precious gift of life and health. We will never take it for granted and never give up the fight advocating and fundraising for all those who have left us way too young. 

Hospital Day Tuesday

After a full day Monday at the hospital we had to be back to do it all again on Tuesday. The kids were happy to find out Ms. Betsey would be there, so we were able to do some art projects when we arrived.

Then we grabbed some lunch in the cafeteria- we all love that place! And went up to check-in to the cardiology clinic. Love this guy...

Julia was a great little patient. All of these tests are such old hat for her. She's been doing them since she was two and has always just climbed right up and quietly cooperated.

Her tech, Tammy, was wonderful and did a great job with the echo and was very sweet to both the kids. We are still waiting on the results. Hopefully Monday the clinic will call us with them.

Many people have asked why the echo's are needed. Julia received 3 chemo drugs. The doozy drug in the trio was doxirubicin (an anthracycline). This class of drugs are cardiotoxic at every dosage- not a comforting thought when we used to pump it into her port directly leading to her heart. These patients are at 15 times the risk for heart failure, 10 times the risk for heart attacks, 9 times the risk for strokes, and valve and conduction issues. The highest risk group is 3 year old females, which is where Julia falls. Congestive heart failure is staged on a continuum A thru D. Our kids are automatically Stage A just for receiving the drug. The damage is a cumulative process usually becoming an issue at 10 or more years after treatment. As the heart is remodeling itself the ventricular walls thin as their dimension increases which raises wall stress. Fractional wave shortening is usually seen beginning at the 10 year mark. The annual monitoring is done to allow docs to intervene as it progresses from Stage A to B, after that it becomes progressive and nonreversible. This is one of the many reasons we desperately want safer treatments for our kids. The chance of congestive heart failure with other chemo drugs is <1%. We have to find other options for anaplastic cancers.

After cardiology we checked into the GI clinic for Julia's follow up for her cecostomy tube. The combination of the new computer system and Dr. Fortunato's always busy schedule led to a three hour wait. The kids did great and were enjoying their playtime. As the afternoon drug on I decided to take Carter upstairs and drop him off at the Arts Connect class we were going to later. Julia and I continued to wait and read books and played games. When Dr. Fortunato arrived Julia turned into a mess. No idea where it came from. He is the sweetest man and has wonderful rapport with her. He has never done anything even mildly painful or invasive in his office and most visits are primarily talking. She apparently was done with all things medical and was angry her brother was upstairs without her (wish she would have shared this with us). It made for a very stressful appointment and she never did cooperate. Very frustrating when we have to wait so many months to get in with him and he is the one helping us with her cecostomy. Ugh. Good thing she had counseling at KidsPath the next day to process these feelings and work on more constructive and cooperative outlets.

The good news is he was pleased with where she is right now and wants us to continue to try and lower the dose of the medication we put into her cecostomy every evening. We are still hoping for her colon to regenerate and heal completely. Data shows that 70% of kids regain full function and this takes an average of 4 years. We are 18 months into this process. So we will continue to chart and tweak and pray for continued healing.

Before leaving we were able to catch the end of the art class upstairs. Once a month Arts for Life holds a class for the patients and their siblings with a separate class for the parents where we can talk and support each other. It was a sweet time with Rima and Wesley's mom and some much needed encouragement after two long days. So thankful for our Camp Brenner family.