Monday, January 21, 2013

The Fight For Hope...

“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” 
---Martin Luther King, Jr.

That is what we are doing.

After Braden became immune to multiple therapies, the doctors told us that all we could do is hope for some additional time with him.  That he would not achieve a second remission.

I was broken...completely.

No hope.

Just complete despair.

Then one night, I had a dream....I am certain it was my mom talking to me from Heaven...

There is no other explanation for why this dream would have happened...I believe in "angel whispers".

I woke up in a start, sat up and thought, "Irinotecan and Temodar!!"

The day before this dream, I had an email convo with Philly in which we agreed that Braden should do ABT-751 to try to hold the remaining disease stable.

I woke up after that dream and fired an email off to Dr. Mosse and asked if it would be reasonable and if we could do Irinotecan and Temodar (two chemos).

The gamble was huge.  Braden's disease had proven to be refractory to chemo and I was asking for chemo.

We had discussed these two drugs in August of 2009 when he first relapsed.  After his disease proved refractory to chemo, we had moved past that thought.

Braden's hair had grown back, and he had the most beautiful big, loopy curls.

Dr. Mosse said it had worked for some kids, and if we wanted to try it, we could.

Another one of those impossible decisions.

1.  Do nothing and spend your time without him having the effects of chemo. But death was a matter of time.

2.  Do ABT-751 and hope to keep him stable for a longer period of time (the longest we were told a child had made it in a situation similar to Braden's was 2 years...which seemed like an eternity to us that that moment).

3.  Try the chemo.  And would kill those cells. 

BUT...if #3 didn't work, and his disease progressed, choice #2 was out of the question and we were back to #1. 

I just knew we needed to do #3...I "KNEW"...but...

It is SOO hard to make that choice.  We could give away 2 years of time if I was wrong.

One of the biggest things to me that was that I knew he would lose his hair and I didn't want him to die bald.

It was a visible sign that cAncer had been the reason and that really bothered me. 

Stupid, I know...but it did.

A lot of life can happen in two years...two more birthdays, a chance to lose his first tooth, friends, memories that would last forever...

How do you make a choice like that??

You just jump....

You can't dip your toe in the water and see how it's going to feel...

There is no crystal ball...

You just jump.

I listened to the angel whispers and,

I looked at our son and saw his fight.  Braden wasn't done...he was still fighting with everything he had.

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” 
Martin Luther King, Jr.

Oh my sweet boy...

How your fight, strength, faith, and courage inspire me....

and frighten me.

It would be one hell of a bad deal if I was wrong.

We decided to go for it.

The first two months were nasty but compared to the chemo he had done before, not that bad.

It was outpatient...we had never had outpatient chemo...sleeping at home at night! YES!

We got to play at home, go to the park, and have a life...

And I watched those beautiful curls fall out. I kept several curls when we finally cut it and shave his head again.

Damn cAncer.

Then we scanned...I held my breath...

And the one remaining  piece of tumor near his liver was shrinking...

We kept going....

“We must accept finite disappointment, but never lose infinite hope.”
Martin Luther King, Jr 
8 months of chemo.
It got really bad. 
Braden's gut is colonized with c-diff and the Irinotecan was wreaking havoc on his gut.
One clinic day, our oncologist tried to convince me to stop...
I said no.
So he sent in another doctor who tried to convince me to try to stop...
I said no.
He came back in the room and I told him "nice try"...
and perhaps I mentioned he could go to hell...
I'm pretty sure I did, but I did it with a smile so that makes it better right?  LOL!
Actually, both our doc and I got a good giggle out of it!!
It was this simple...if we stop, he dies.
During our multiple rounds of chemo, sometimes his scans would be improved, sometimes stable every three to four rounds when we scanned. 
But, again, I knew if we stopped, it would take over and he would die.
Then, January 27, 2011...Dr. Mosse walked in after scans...I was holding my breath because I had watched his scan images during the scan and it looked different.
I was preparing myself for the bad news.
And....she said,
I am very happy to be able to tell you that we see no evidence of cancer on Braden's scans!
I said in a small, shocked whisper, "I'm going to need you to say that again!"
Then tears...every single one of us in that room, except Braden...
who just wanted to go play.
It wasn't the end...just because scans show no evidence of disease, does not mean cancer is not there.
It just means the scan cannot pick it up because the current technology isn't good enough to get to a small enough level.
We would continue to fight....
and we continue today.
But that day was a huge victory.
“Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.” 
Martin Luther King Jr. 
And Happy Birthday Dr. King.  Thank you for your courage, fight, wisdom, love and vision.