Sunday, March 9, 2014


Most of us have had to make choices that are very difficult.

Some of us have had to make choices that were impossible.

We have one of those impossible choices to make right now.

Braden's secondary cancer (mds leukemia) that was caused by the harsh treatments he endured to beat his first cancer (neuroblastoma) is going to kill him if we don't do a bone marrow transplant...and that could kill him. And if the transplant works and rids his body of the mds, his immune system that may be responsible for keeping any dormant neuroblastoma cells quiet may then allow the neuroblastoma to come back. And that would kill him. 

It's a choice in which, like so many parents of children with cancer, we have to make an impossible decision about life and death.  

Does he die after he's had the most amount of good quality time without further risky treatments, or do we risk things and hope to not kill him, shorten his life, or take away the quality of the time he has left with the risky treatments by fighting for a cure...

This beautiful,vibrant, happy boy.

We have been fighting this mds since he was diagnosed on July 8 and we were told that he had only several weeks to a few months to live. We had to make the choice to either do nothing and let him die then or try a chemotherapy that we inject into him at home for seven days, two to three shots a day every three weeks.

Every time we have been told Braden was going to die, we have take the option that gives him a chance to live. 

And we have faith that God will be there for us no matter what the result of the treatment.

Now we have to do something different for his mds. We have known this path isn't curative and would only buy us time and now we see signs that we need to proceed with transplant if Braden is going survive.

We have chosen the only path for treating his mds that allows him even a small chance of beating it all and surviving.  Braden will have a bone marrow transplant and we will hope that he survives it, it kills all the leukemia, his donor cells engraft, and the neuroblastoma stays quiet.

Imagine being at the top of a jagged cliff and knowing you are going to die very soon if you don't jump and take a chance at surviving.  You know that whatever way you jump, there are rocks surrounding you that are not going to give a safe landing.  There are just a few green, softer spots (and even those softer spots aren't particularly appealing). 

But WE are not going to jump.  

We have to throw our child off that cliff...

and we can't make the jump with him. 

We have to hope our aim somehow lands him in the exact right place at the exact right time so he will recover and survive. 

We know no matter what, he will not land unscathed, it's a matter of trying to choose the spot that will do the least amount of harm and give the most hope for recovery and survival.

We know transplant will cause harm and will have side effects that will last the rest of his life. We don't know how devastating and debilitating those side effects are going to be though. 

That is a lot to wrestle with in your heart and mind.

Imagine, for a minute, throwing your child off that cliff hoping to do the least amount of harm while giving him a chance.

Imagine being forced to make a choice like that with your child.

It sucks as much as you are thinking, especially when it's not a hypothetical question.

We can only hope, trust...

and have I have unending FAITH that God is there and will give us the right answer to our prayers...

even if it's not the answer we want.

That is a very hard thing to do.

God gives me peace and my hope, my faith and my trust are bigger than that jagged cliff. 

My God is greater than that cliff and His love surpasses all the danger and fear.

We are fighting like crazy to keep Braden here with us. Make no mistake...we are NOT ready to let him go!

I've held on to my faith since his terminal prognosis in July. And this past week, we learned some very unexpected news that made that teeny tiny glimmer of hope we have held onto just a little brighter.

The doctors told us that Braden is in a very unique situation and he has a few things going for him.  

And the words "a few things going for him" were unexpected and glorious to hear . 

First, his neuroblastoma has been in a second remission for three years. That is nearly unheard of with relapsing neuroblastoma.

Secondly, his mds is currently only affecting about 2% of his cells and because that is fewer cells to have to kill and it has responded to therapy. He began at about 20% of his cells so the chemo has been working. It is encouraging this the cancer responded to the chemo and it's better that he has less disease to fight with transplant.

Third, after 6 years of continuous cancer treatment, Braden's organ function is good. That's pretty amazing. He has a few treatment induced health issues but his organs are functioning in acceptable ways.

Then there's a huge positive. Braden has one and only one bone marrow match in the registry. And his bone marrow match is his ten year old brother, Zach.

That gives him a "related bone marrow donor". And it's a huge advantage.

There are multiple benefits to having a bone marrow donor that is a sibling, simply put it can make the engraftment process easier and cause less complications and side effects.

It only happens 25% of the time that a sibling is the match for a patient.

And on Friday, we learned that Zach is a FULL MATCH for Braden...and that is really good news.

Zach is excited to try to save his brother's life.

And we are blessed to have a ten year old who is brave enough to try. It may not work, his cells may not engraft and even if they do the rate for relapse of mds post transplant is extremely high, but knowing all of that, Zach is willing to try.

Zach is a pretty awesome kid!

So while we are standing on that cliff with really crappy choices to make, we have some new hope...

....all thanks to faith that God will guide Braden to a softer green spot on that jagged cliff.

Please hope with us and believe all things are possible!

“Never be afraid to trust an unknown future to a known God.” 

--Corrie ten Boom