Friday, November 8, 2013

To Believe...or Not To Believe...

To Believe or Not To Believe...

That is the question...

We just got really good news about Braden.

July 8, our 13th anniversary, we were told that Braden had several weeks to a few months left to live. There was nothing to do. Our teams in Kansas City and Philly had never seen a child survive with treatment induced MDS that had fought neuroblastoma.

MDS is a pre-leukemia that will turn into AML that was caused by the treatments he has had to cure his neuroblastoma.

I posted that on our caringbridge site and a few people reached out who knew two kiddoes in the US who had made it through treatments and had shown no evidence of MDS or neuroblastoma.

I connected our teams with the teams that worked with those kids and they chatted. A decision was made to put Braden on a medication called Azacytadine. Vidaza is the product name. It's a chemo that is injected at three week intervals...3 shots every night for seven nights in a row.

He has been so brave about those shots.

SO brave!! He never cries, he is amazing!!

He has had three rounds of Vidaza and we were preparing for a fourth, but He didn't make counts. So we tried again...and again...and he has still not made counts.

His white blood cells were what was suppressed...they were very low and that can be a sign of progression of the MDS.

We did a bone marrow aspiration so we could have cells to count and see if his disease was progressing and if so, how much.

And we met with our transplant team to discuss what we would do for transplant (the only curative treatment for his MDS...also the treatment that could allow his neuroblastoma to come back due to donor cells that don't have the ability to keep dormant neuroblastoma cells quiet if any are there).

We are fortunate and we do have a bone marrow donor..there was ONE match in the registry...ONE.

I had gone to the store and bought everything I would need to have for 30-60 days which is about how long transplant will take in the hospital.  Locked away in the hospital for that length of time.

I had our carpets cleaned NOW because you can't do it right before you come home from could create mold and fungus in the carpet and that could kill him. He is taken back to having the immune system of a fetus after the chemo that is given to him to kill the cancer cells.

And then our basement flooded, destroying the carpet.


You also can't have live plants, root vegetables, go outside without a mask, go in crowds, have guests in your home that have been exposed to sickness....and the list goes on and on and on and on....for 100 days following transplant.

I was ready... I had everything ready to go so when we got the result back and found out the disease was progressing, we could enter the hospital and get started.

I ordered Christmas pajamas, I had Christmas gifts purchased, Christmas cards ready to go, family pictures had been taken...

Everything was ready,

but me.

Transplant could kill him and it will absolutely, positively change his long term health. He WILL have side effects and he will NEVER be the same again...he will have some level of Graft Versus Host Disease... Exactly how he will be impaired is yet to be seen. And if the neuroblastoma comes back...

it's going to be very bad because trying to fight it after his body is weakened from transplant...

not a good prognosis.

We waited for six very long days to get results and yesterday we got them.

I was NOT ready for what we heard.

In August and June when we did his bone marrow tests, 200 cells were sampled and 18% of them showed MDS cells.

They initially sampled 500 cells with this of those cells were MDS cells.

Not believing that, they sampled 500 more.

Zero of those cells showed MDS.


And the result we got back was that Braden's MDS is stable to better.


I had no idea it could GET better? I don't think that was anyone's hope or goal...I think every person on our medical teams in both KC and Philly were hoping to just slow it down. They never mentioned Vidaza could actually kill the cells!

After asking our oncologist 100 questions, I have learned that the sample could just have been a sample that didn't show any..but there could still be cells there. SO we will have to sample over time and see if it remains zero.

And hope!

I should be thrilled...over the moon...happy beyond belief...

but I'm waiting for the other shoe to drop.

Waiting for the phone call saying, "about that sample..."

"we mixed up the results with someone else..."

"we are really sorry but we made an error in the lab..."

I'm a hopeful pessimist.

I want to believe it, but my guarded momcology heart says "don't fall for it..."

Our oncologist keeps telling me to be happy.

For the record, I have smiled...and then I stop.

I took the boys out for pizza last night to celebrate and I was staring at Braden while he and Zach played. My heart hurt so much because I was so conflicted.

And right then, I heard the words "Just Breathe" come across the sound system.

Faith Hill's song was playing.

I think that was a sign from our angels that I need to "just breathe".

I just started laughing and the boys looked at me like was insane.  Okay...they could be right. ;)

I'm trying to breathe...counts on Monday will tell whether or not his counts are still down. They believe it has likely been a virus that suppressed his white count (he was sick for a few days) and that the Vidaza had a lasting effect in suppressing the counts.

If we get better counts on Monday, I will breathe easier.

If not, I'm likely to ask for a bone marrow biopsy rather than just an aspiration.

The past six years of our cancer battles have led me to believe completely that the power of positive thoughts and prayers can change the world.

I am reminded of Matthew 17:20

..."For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.”

I stand in awe of God. And I am grateful beyond words!