Monday, September 8, 2014

5 and 10...

When Braden relapsed with neuroblastoma, he was weeks away from his fifth birthday on August 11, 2009.

We were told that he had a less than 10% chance of survival and that there was no known cure.

The disease continued to spread, but we tried some therapies that had never been tried before and got lucky.

He went into a second remission and has remained in that remission since January 25, 2011.

FIVE years ago!

He had less than a 10% chance of being alive in 5 years.


As Braden would say, "Boom Baby!"

The time between August 11, 2009 and January 25, 2011 was very rocky and we were told more times than I can count that he was not going to survive and we needed to spend our time wisely and enjoy every day with our son.

We continued to fight...and more importantly, so did Braden.

It was a big gamble. We knew that the therapies we were trying could shorten his life even more...

our hope was that it would bring him more time.

Nothing is more difficult than making life/death decisions for your child.

And there is no right answer.

There is only an answer...

and faith...

and HOPE!

My heart has shattered into a million pieces a million times. It has been held together with duct tape and bailing twine for many years....since our daughter Miranda died on August 1, 2001...

Some days it feels like my heart has simply hardened into a rock because it's easier to shut out feelings than it is to feel the pain of them.

I'm a different person today than I was 13 years ago. And that is not all for the best.

Every time I think that I can't keep doing this, that I'm too tired to keep fighting, I think about all of my friends who have buried their children, and in their empty arms and broken hearts, I find my reason to continue.

Being able to continue to fight every day, no matter how hard it is, is a blessing!!

Their loss inspires my fight. Braden's fight and courage and relentless HOPE and positivity give me energy and reason...

and for that, I am grateful, blessed, and changed in a positive way.

When Braden turned 5, I believed it was the last birthday he would see.

Then he turned 6...7....8....

and at 8, it became a crapfest again as just weeks before his 9th birthday, he was diagnosed with a secondary cancer that was CAUSED by the treatments he had to save his life.

That is messed up.


The things that saved his life were now going to be the very things that would end it.

We were told that he only had a few weeks to a couple of months to live....

and we needed to spend our time wisely and enjoy the time we had with our son.

Same message as we had heard multiple times before.

But this time, the doctors told us they had NEVER seen a child with his initial diagnosis and his secondary diagnosis survive.

We tried some things that had been done with other children before hoping to buy some time...

to delay the end.

And then came the hope again.

His cancer responded to the treatment...and our teams began to think he could try for a cure with a bone marrow transplant.

So we all were tested and his 10 year old brother, Zach, proved to be a perfect match as a bone marrow donor. So he went through transplant and received his brother's bone marrow cells to try to save his life.

And a year after his secondary cancer diagnosis, he is celebrating his 10th birthday.

cANCER free!

It's early in the post transplant process as it's only been about 4.5 months with the new cells. It's all still a crapfest and up in the air. He stands a 50% chance of relapsing with the secondary cancer (a leukemia),

and because we've replaced his immune system with his brother's any immunity his own cells had developed against neuroblastoma is gone so he stands a high probability of relapse of his neuroblastoma as well.


he is turning ten...

double digits.


He's kicking it's backside.

All thanks to the courage and fight of a tiger...

the love of an army...

the protection from a God who is bigger than cANCER...

and HOPE.

We weren't supposed to get this day,

but it's here and we are grateful beyond explanation.

5 years post relapsed neuroblastoma diagnosis...

10th birthday.

Hey lose!