Wednesday, August 3, 2016

Taking a Leap of Faith

I'm not going to sugarcoat. We have really been struggling these past few days. We've been wrestling non-stop with the options presented to us for the next round of chemo.

Because Ava's cancer is so rare, she's never really fit into standard protocols. Doctors have scrambled to keep her alive these past 2.5 years using different regimens and even moving to newer drugs when conventional medicine failed.

But now that we are up against the wall, Mike and I have been invited into the conversation. We are asked questions like "What is your end goal?" "What intensity chemos are you comfortable with?" "Are you looking to prolong life or are you looking for a cure?" With every question comes an answer that changes the course of treatment.

For the longest time, Mike and I have been treading water. We have been doggy paddling not only our own weight but we each have a child on one arm, maybe even two. We are exhausted, barely alive ourselves. We watch one dip under the surface and we frantically pull him/her up only to see another one bob down. We huddle together to find a better strategy that ensures we all stay afloat but there is too much weight. We have worked hard to stay buoyed for so long looking for reprieve, only to find the storm is coming and one wrong move could drag us under.

There is so much at stake in every decision. There is so much cost to cancer. So we carefully consider our options. We swim to this side and then the other looking for firm footing. But the reality is, these choices really suck and it is too much for a parent to have to choose. We are asked to decide the circumstances surrounding how we want our child to live, how we want our child to die. We have oncologists, social workers, the palliative team, so many people offering their expertise but it boils down to this: it is my girl. How could you choose, if this child was yours?

Ava's results came back really good. Her lung nodules have almost all disappeared save for one small one. Her MRD is down to .09%. It looks like Mylotarg did some damage. But it is still not enough. She is not in remission.

We sat with Ava's oncologist last Tuesday and he gave us our options. We could choose high dose chemotherapy (Fludarabine + Cytarabine) at 5 times the dose she's received in the past plus another round of Mylotarg. There is a 60% chance of infection and possibility of death from those infections. She would be in-patient at the hospital for 4-6 weeks or until count recovery. We would move quickly to second transplant with more intense chemo to wipe out her marrow and bring her to the brink of death. Then, we would slowly infuse her with another cord blood in hopes that this time, this time it will work. Yet, after all this, there is still less than 20% chance she will live. Back in October, when Ava's beloved transplant doctor explained the risks of a second transplant, she cried. There would be damage, she said. We would not walk away unscathed.

Or the other option is to try Venetoclax. This would keep her out of the hospital. It would offer better quality of life. She could celebrate her birthday in 3 weeks. There is theoretical evidence that it could work. BUT there is no data. She would only be the second child ever to have received it. The dosing would be, at best, an educated guess. The actual treatment is considered investigational meaning there is no data, other than an ex vivo study, that promises efficacy . If her disease progresses through Venetoclax and spreads to her skin and spinal chord, she would be disqualified from transplant. At that point, we might try to pursue immunotherapies but there are no pediatric trials yet. We would be looking at more experimental therapies.

We have brought these options before our family, our closest friends, our spiritual advisors. The answer remains the same.

It is beyond human ability to make these kinds of choices. Yet, if there ever is a chance at comfort it is because of this. We do not hold her life in our hands. Whatever choice we make will be the right one because it will be made out of love for Ava. The decision will not be made lightly. There have already been sleepless nights, pillows wet from tears, and hours of dialogue.

I brought a G rated version of these options to Ava to allow her some power in the decision making process. She answered with, "Oh Mama, I can't choose. I don't want to go to the hospital anymore but I don't want to have cancer either. So I will do whatever you say."

Oh Lord, to have that kind of faith...Hear her prayer.

As Ava jumped into bed tonight, she announced, "I'm taking a leap of faith!"

Yes, child. Let's jump together.

If you would like, please join us in prayer for wisdom and peace as we enter this next round of chemo.

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