Monday, January 27, 2014

HOPE for Four....

January 27, 2011, Braden and I were sitting in a exam room at CHOP waiting to see Dr. Mosse after scans.

I was pretty sure that we were going to have bad news about his neuroblastoma because they had seen something on his CT scan...

and I saw Dr. Mosse walking into the CT room as we were coming out of the radiology department following his MIBG scan. 

An MIBG scan is a nuclear med scan in which a radioisotope is injected into him and will "light up" on any active neuroblastoma cells.

I can see the MIBG pictures as they build and the pictures looked very different than they had ever looked before.

to me.

"Dr. Mom" ;)

I had found a penny the day before, and I picked it up and put it in my pocket.

And I had rubbed it the entire scan...and told myself to TRUST!

(see Pennies From Heaven...

Dr. Mosse came into the room and gave Braden a high five and then said, 

"I am really pleased to tell you that Braden's scans look completely normal".

I sat there with my mouth gaping open and said, "I'm going to need you to say that again."

She did.

and then I cried.

We had never heard those words...there had always been something lighting up on his scans.  And this news came just weeks after I had to fight our "oncologist" in Kansas City who told me the therapy was too hard for Braden and we would have to stop.

I told him if we stopped Braden would die...and we were not stopping because the last scan showed things were improving.

It was an ugly meeting and not much good came of it,

except that I got my way.

And then I worried that I could be wrong. There's a lot of guilt choosing therapy for your  child.

It's life and death.

And you have to pick.

It's been three years since that day.

And his neuroblastoma remains in remission despite ALL odds.


But now Braden is fighting a secondary cancer...MDS, a preleukemia that was actually CAUSED by the treatments he endured to save his life.


But without those treatments, we wouldn't have heard he showed no evidence of neuroblastoma and he would have died four years ago.

One of the many life/death choices we have had to make over the past 6 years.  It's an impossible position every single time we have to make those choices.

Those treatments actually altered his DNA and now the doctors are very skeptical that Braden can survive the MDS. Our teams in Kansas City (a new oncologist that we love) and in Philly have never seen a child survive treatment induced MDS after neuroblastoma.


And that is terrifying and horrible.

Braden has chemo shots every night for 7 days, then off for 3 weeks to slow the MDS and give us more time with him.

And his last bone marrow biopsy showed zero MDS cells out of a sample of 1000 cells.

That is amazing!!


the one child I know who has achieved this "zero" status with those same chemo shots for 15 months, began showing cells and is now in bone marrow transplant. We pray for her every day.

Which is not good because we are trying to avoid transplant.

Transplant could kill him...or he could live through it with debilitating side effects...

or he could live through it with minimal side effects...

just to have the neuroblastoma come back.

IF we have done what we set out to do, and have taught his own body to recognize neuroblastoma cells and keep them dormant, when he has a transplant and his body becomes all donor cells, he will no longer have that immunity.

and the neuroblastoma comes back.

and he dies.

We have been asked to once again choose how we want our son to die.


How the hell do you do that?

We follow Braden's lead. Braden keeps we keep fighting with him.

We keep hoping...and praying...and believing that miracles continue to be possible.

We've seen miracles many times...

We just need one more.

He has another bone marrow biopsy on February 10, that will tell us how things are looking with his MDS.

Celebrate today with's truly a "TAKE THAT cANCER" moment.

And hope and pray for tomorrow.

We know how blessed we are to still have Braden with us, feeling good, growing, loving, and showing us the real meaning of God's grace and love .


"Miracles happen everyday, change your perception of what a miracle is and you'll see them all around you."...Jon BonJovi