It's Worth the Pain

"It's worth the pain, " I heard her say. I turned around and saw the baby clawing at her face.

"It hurts, but I love him so much that it's worth it," she repeated.

I've been thinking about that a lot recently. I contemplated what life would have been like without my kids. I'm pretty sure it would have been less painful. When they entered the world, it was through searing pain, especially Ava's birth. I remember it like yesterday. My water broke and still no contractions after 12 hours. So I was hooked up to Pitocin and the drip was started. About 3 hours in, the nurse came in and asked if I wanted an epidural. This was my first baby and I was determined to give her the best start to life. I thought that meant to say no to drugs. About thirty minutes later the pain really set in and I frantically called for the nurse. "It's too late!" she said. Apparently I was already fully dilated and the pain I was feeling was Ava entering the world through the ring of fire.

I guess that was only the beginning of the pain that would come. As my heart grew in crazy proportions, there were growing pains. One time while sleep training her, I remember her crying for a solid hour. I pressed my face against that hard wooden floor trying my best to see her from the tiny crack where the door didn't quite meet the floor. Eventually, I saw her give up and lie down. I tiptoed in to give her that kiss I longed to give while she was crying. Instead I gasped and picked her right up when I saw that she was sleeping in her own vomit. I had let her cry so hard that she threw up. I wept that day. Right there in that room, in the middle of her nap time, I picked her up not caring that it would set us back a few nights of training and I held her tight, asking that she forgive me for letting her down.

Then there was the time she almost lost her life to cross contamination of wheat. Her face turned blue and epi-pen after epi-pen failed. I held her slumped body in my hands and begged her to look at me, talk to me, breathe with me. It took 4 epis to coax her out of that reaction. To this day, parts of my heart have not healed.

The day we heard the news that she would be fighting cancer at the tender age of 5, there was an unspeakable amount of pain. The kind that turns your knuckles white, and knocks the wind out of you. The kind where curling up into a ball and dying sounds like a better option than watching your baby die a thousand deaths.

But, now, here in this moment I can't remember a more searing pain than this kind. I look at her and imagine all the moments that will be cut short. I steadily store away the memories that will have to be called upon in moments of deepest weakness. The utterly despicable thing is, no matter how many years we were blessed to have her, it will never ever ever ever ever ever ever be enough. When laying there without her by my side, no amount of happy times will ever suffice to take the pain away.

Yet, would I ever trade my years with her for lesser heartbreak? No. Because love is worth it. Every smile that she's given us over the years is worth the emptiness we will feel if she is no longer here. Every...I can't finish this illustration. There are no words in my vocabulary to adequately explain the anger, the sorrow, the fear, and the desperation.

It's like we're on the outside of a tall tank of water watching her stay afloat but knowing she will eventually drown. And all we can do is pound on the glass and plead for her safety. But we can't exchange places and we can't get in to save her. We scream our protests but it makes no difference. We scramble up the wall but we slide back down. And then she looks at us with those trusting eyes and we look back willing her to know that she is loved, loved beyond measure and that she was worth it.

We haven't been able to sleep since we've heard the news. We wake in the night reaching for her, touching her hair, holding her hand, whispering prayers in her ears, kissing her soft cheeks, soaking her in, afraid to sleep for all the minutes that will be wasted.

We are in a difficult place. The biopsy came back confirmed for leukemia, the same one that wouldn't go into remission before transplant. We are in another rare situation where this only occurs in a tiny percentage of patients. Of course, this means there is no protocol in place. So we can do a few things. We can wait it out and give her all the healthy months that her body has left before the disease infiltrates her marrow. There is a very small chance that her body could fight it off but it seems unlikely due to the fact that these rogue cells escaped the radiation and the graft-vs-leukemia effect in the first place.

We can go straight to a second transplant and hope that since she is in a healthy state now, it will boost her chances for a success. The prognosis for a second transplant is still only a dismal 20-40% disease free survival. Knowing that her leukemia is so aggressive, the relapse rate would also be very high.

The third option is to give her low dose chemo and skin radiation with the hopes that we can put her in remission or wait for new trials to be opened up. There are currently no institutions that do this as standard practice so we are on the hunt for hospitals.

So the question is, which option will give her the best chance at survival but the best quality of life? We are stuck in so many ways. To even be contemplating this is too much for a parent's heart.

God, meet us. Turn your ear toward us. We have no eloquent words, just groans and shudders and tears. Please help us in our time of need.

Ava, I could never have imagined how much my heart could love you and how much it could hurt for you. It has been hard to see you go through so much, but it has been worth it to be a family. Every single second of your life is a gift and we will cherish you always. Love will win. Love will win. Love will win.