Wednesday, August 3, 2016

Venetoclax

Yesterday Ava began her first round of Venetoclax. She swallowed 10 pills and 10 today. When we get the okay to increase her dose, she will be swallowing 20 pills a day.

This girl is made of steel.

We decided to go with Venetoclax, a very targeted therapy, for two reasons:
1) Ava wished to stay out of the hospital.
2) She caught whatever bug Gwen and I had so it was too dangerous to start high intensity chemo at this time.

We are told that we can switch to high intensity at the first sign of disease progression. We pray that we would be able to catch it before it spreads to her CNS or her skin.

So this is really scary for us. But, there is also so much that we gain from being home together.

We have time. We wake up next to each other and fall asleep as a family. Our days are spent in close proximity with every member. We witnessed Jude's first steps together! We've been able to lean in close to Gwen and salvage her broken heart from years of instability. We will be able to celebrate Ava's birthday with a party in just a few days. We watched many beautiful Pacific Northwest sunsets from the beach close to where we are staying. We have been able to taste how sweet it is to live as a family of five.

In the comfort of our Seattle home, we also have had the chance for real conversations deep into the night, all four of us (sorry Jude) cuddled together. Last night was no exception. As we got the girls under the covers, Ava had more questions. There is so much she is hungry to know.

She starts again the same way as before.

"Not saying this is going to happen, but would it hurt if I die?"

Mike and I look at each other while we digest this question. I answer.

"Everyone dies. For people who may not be prepared for death, it may hurt. Like if you get into an accident. But, if you know you are going to die, there are ways to make it so that there isn't any pain."

There is silence while she processes this answer.

"Kind of like when I get sleepy medicine?" she asks.

Mike and I tallied up the times that Ava has been put under general anesthesia for a procedure. We came up with the rough estimate of 35 times, but it is probably more. We hold her while the medication begins to take effect and she whimpers that she is scared. Then her body goes limp in our arms. Without fail, she whispers "I love you," and all the unshed tears roll down right before she becomes dead weight. We wipe the tears; we lay her down. It is agony. Thirty-five times we have endured this. Thirty-five times.

"That's right. I believe it will feel just like that. We would make sure there is no pain. It would feel like falling asleep," I say with confidence and strength but really the fight in me feels weak. I want so much to be talking about something else. Maybe My Little Ponies or plans to visit her grandparents in China. This topic is crushing; it is a slow death to our hearts. But we are determined to talk about it as many times as she needs.

"Mama, if that happens, can you not cry until I'm sleeping?"

"Why, Ava? Would that make you scared and sad?"

"Yes," she replies softly.

"Okay, Ava. I will not cry until then."

"Thanks Mama. I love you," she says before closing her eyes for bed, just like in the operating room.

Our tears flow after she has fallen asleep. Both Mike and I cherish these conversations and simultaneously mourn them. We stay up late into the night, unable to sleep, each with our own thoughts, prayers, fears, hopes.

It is dark and we feel like the only ones still up in the silence of the dawn. Yet, God's presence is even heavier than the hurt. He is there, perhaps even cradling our heads as we muffle our cries and whisper His name. I reach my hands up to the ceiling. I need Him to hold them through the night.

One of Ava's favorite movies is Joseph: King of Dreams and her favorite song, "You Know Better Than I" is from that soundtrack. Early on in her diagnosis Ava told me that if God doesn't heal her, she still believes that He has something better planned for her.

God, help me let go of the need to know why.

For Your ways are higher than mine.

video

2 comments:

MD said...

Hope everyone is OK, been a while since we heard an update.

Anonymous said...

Yeah. Thinking of Ava. Not expecting a long post. But then, don't feel pressured to post either.