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Social Media Takeover: Brian Billeck

Q.  Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?

R. Not really.  Knew of it, sure.  Knew what they do….not really.  Knew just how devastating it can be for the kids and their families…..NOT AT ALL!

Q.  Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?

R. There are moments in your life you can recall with great detail.  Maybe it was your marriage.  Maybe it is the birth of your child.  For me, I can recall the night I found out Damon had cancer as if it happened minutes ago.

That weekend, I was hunting with my oldest son Brandon.  While in the deer stand, my ex-wife Lisa sends me a picture of Damon’s arm (one of the twins).  She said she was in line with him at HEB and when she hugged him to say ‘I Love You,’ she felt a lump.  She took a picture and sent it to me.  She inquired as to what it could be.  I had no idea. 

She decided to go to Texas Med Clinic but did not arrive until around 10pm.  After an hour or so, the doctor sent them to The Pediatric Hospital for further tests.  Now it is past midnight.

They take tests, X-rays, etc. and all the while I’m pacing back and forth at Deer camp waiting for news.  I call constantly but no word.  Plus, they are sleeping waiting for answers.

At 3:26am I received a call from Lisa (Damon’s mom).  I asked what did they find out?  There was silence.  I asked again.  The silence turned to tears and at that moment, my heart sank.  I knew something was not right.

The doctor took the phone from Lisa and said (And yes, I can recall word for word what was said): “Mr. Billeck this is Damon’s Doctor…..there is no way to sugarcoat this.  Damon has a form of bone cancer and we need to deal with it immediately.  We are transferring him to the Children’s hospital via ambulance and he should be there within ten minutes.  I’m very sorry.”

Just like that, our lives were changed forever!!

Q. Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation?  Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?

R. Damon followed the protocol for treating Osteosarcoma.  Sadly the methods of treatment of osteosarcoma over the past 30 years have not changed.   Part is due to awareness, other part due to funding.  They give the kids the same schedule of chemo and expect a different outcome each time.  Doesn’t happen. 

How do you know what is right and what is wrong.  When Damon was diagnosed, half the doctors said to amputate his arm right away, the other half said it wasn’t necessary and that Limb Salvage Surgery is just as viable.

We spoke to Damon and kept him informed at all times.  We NEVER hid anything from him, and never sugarcoated it either.  He knew what we knew when we knew it.  Yes, he was only 9 at the time, but the one thing you will be amazed is the rapid advancement of maturity in your diagnosed kid.

For the kids going through chemo it’s painful, very, very painful.  It’s equally as painful for the parents because we can do NOTHING.  We can lend support, say we love them, but in the end, they have to suffer and we have to simply watch.  Your heart will break daily!  There is no getting around that!

Q. Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena?  We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s.  Overall – how did your child’s journey shape yours and your families new normal?   

R. Trials & obstacles go hand in hand with cancer.  There will be days they are feeling great and days they are in great pain.  The journey is like riding a rollercoaster.  From the day your child is diagnosed the rollercoaster begins.  Here’s something they wont tell you.  Once you are on the rollercoaster… can never get off!

You will forever have highs and lows.  Even if they get to a stage of N.E.D. (No Evidence of Disease), the coaster continues.  Because you still have to go back for 3 month check ups and experience what we can “Scan”xiety.  That Scanxiety NEVER gets easier.  Osteosarcoma can lay dormant for 10-20 years and show up again with a vengeance. 

The journey is not all bad though.  I will say the journey is what YOU make it!  You can cry about the fact your child has cancer or just say….Okay…my kid has cancer, let’s move on.  It’s up to you.

Pharrell Williams sent Damon a video that changed our lives and how we fought cancer.  You can look for it on YouTube. 

“The past you can’t change and the future you can only contemplate.  But the preset is something most people ignore.  The present is a gift, it’s malleable and it can be whatever you want it go be.  Think hard about that!

We chose to make the present HAPPY!  Damon had cancer, so why get mad, why get sad.  It will not change the fact that he has cancer.  Plus, we don’t know the future.  We don’t know if the surgery will be successful.  If the treatment will work, etc.  So why worry about it?!  But today, we can be happy.  We can do whatever we want and we did!

My suggestion is to be HAPPY and have fun.  Cancer can be fun if you let it.  You just have to open your eyes.

Q. What point is your journey at now?  What survivorship issues are you facing?  How do you handle the unknowns? 

R. Damon passed away at the age of 13 after five years of fighting.  He won his battle with cancer, but lost his life in the process.  That’s what heroes do….sacrifice themselves to save others. 

The last year of his life was spent going from one trial medication to another.  Never knowing if it would work or kill him.  One trial, after one day on the drug sent him into a 3 day coma.  Damon’s response after waking was “Guess that one doesn’t work!”  LOL….  Another trial caused his skin to change color.  I said he looked like a Minion.  He knew the danger, but didn’t care.  Because he also knew every failure would help point them in the right direction.  How many adults would be willing to do the same?!

So now we deal with the fact our son | brother & twin is gone.  If any person ever tells you it gets easier as the years pass, they are lying!  It NEVER gets easier.  NEVER!!

If a person loses their spouse…they are a widower
If a person loses their parents…they are an orphan
If a person loses their child…..there is no term for that!  Painful…is the term. 

But…doesn’t mean every day is rocky.  As we said before…we chose to live Happy and that still applies.  Damon was one hell of a kid.  He changed the world and inspired others!  He did more in his 13 years of life than I feel I have in my 52.  But I’m thankful I had him.  I don’t curse his death…..I celebrate his life!

Damon was a Honorary San Antonio Fireman.  He was a Brand Manager.  He was a leader, and innovator and a true inspiration for many!

He had a quote that he loved:
Strength isn’t measured by how much one can lift.
Strength is measured by how much one can lift others.

By those standards, he was one STRONG kid!!!!

Follow Brian on Twitter or Instagram @happy2badad or on Facebook at @BBilleck

Read Damon’s original Gold Ribbon Hero story here:

You can take action in your own state by learning more here.

Learn more about the types of sarcomas and read more stories here during our Sarcoma Awareness Month feature.

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