We don't know how the cancer spread so quickly...it was contained in the marrow but somehow spread in extramedullary sites totally under the radar. We are shocked and grieved and angry and confused. But the doctor told us that we made the best choices we could for her minute by minute. I know the million dollar question for us is "would this have been different if we treated earlier?" He told us that there is a chance we would still be here having this conversation even if we had done chemo right away. Leukemia cutis is really that aggressive and ugly and insidious. There really is no way of knowing what could have been and the hardest thing for Mike and I to do is to forgive ourselves for missing the signs.
Without immediate treatment, we are looking at only one to two more months with Ava. She would die from her major organs being compressed by the leukemia. And I can't believe I am typing this disgusting sentence out.
So we are choosing to treat aggressively with chemo. The doctors will reassess with another PET scan at the end of this chemo cycle. If the disease does not respond, at that point, they said it means that the cancer is terminal and they will likely suggest stopping treatments. We could go down in flames while we treat or quietly hold her hand as the cancer chokes the life from her. It is up to us, they tell us.
For seven years I have made choices for her about what she ate, what she wore, what schools, what shows, what shoes, what activities and each of these choices were made with love to see her thrive. How then can you ask me to choose how she will die?
We will do it though. We will choose to watch her lose that gorgeous, hard earned hair, in clumps and strands. We will subject her to transfusions, chemo, radiation, neutropenia, side effects, and possibly toxicity, all for the chance that she might live and breathe and grace us with one more day. The statistics of her reaching remission is under 20% and then to stay in remission even with a transplant is under 30%. These are just numbers but they are really messed up numbers. To think that our children can die is so wretched that my heart physically feels like it's tearing.
I spent the majority of last night vomiting up my dinner. I kept throwing up and throwing up as my body rejected this awful season of life. It's like knowing that you are scheduled to drown in 3 weeks and you try to anticipate it, to feel it so that you can prepare. But nothing can get you ready to experience your throat closing up, your lungs to burn, your heart to panic, your nose to sting. And the merciful thing would just be to die and to pass from this temporal pain into eternal glory yet the impossible thing is, we do not die. We just sit in this perpetual pool of sorrow drowning each day with the weight of the pain.
I want to die. There, I said it. I think of Ava passing on to heaven and how glorious it will be but also how sad it will be to send my tiny 7 year old on a journey so far without my hand to hold hers. She's never even been on a sleepover. She has yet to spend a night apart from us. And yet, we may be called to let her travel the expanse of the skies, so far from our reach and our embrace. It seems wrong to let her go. And if she must go, isn't it only right for one of us to go too? At least one parent with each child has been our motto as we journeyed down this stupid cancer path. To think we must break that pact...I want to scream. No. Stop. Please stop this madness, Lord. Please, please make a way. How will we behold her bed, her things, her books, her toys, her bike, her clothes, her bear, her notes, her videos, without wishing for death so that we can hold her, talk to her, have her near? How will we drive back to Seattle without sobbing as our eyes glance back at her empty car seat?
But, oh, to know that the Father weeps with me. To know that He is not aloof and afar but on the floor holding back my hair, one palm on my back as I weep and surrender and scream and fight. This is to know peace. He is at the helm. We will keep Him there.
After the appointment, we came home to eat dinner and gather our things before heading back to the hospital for admission. Mike and I cherished the few hours knowing that our life is on the cusp of changing so dramatically. It may be the last time for them to play while Ava still has hair and feels healthy. Once admitted, we will begin the difficult chemo regimen that will probably make Ava feel miserable and weak. So it was sweeter than anything to see them run and play and find joy in each other. Ava cried while Mike strapped her in the car seat later that night because I had to stay behind with Jude and Gwen. Ava cupped my cheeks in her little hands and told me, with the saddest eyes, that she did not want to leave me because I was the love of her life.
There is this phrase I say to her in Korean all the time, 끝까지 사랑해. It means, I'll love you to the end. I say it to her often so that she will never doubt that my love will stay for her, it will go with her. In the same way, I will pray until the bitter, bitter end that God would save my girl Ava. And He will. For we know this earth shall pass away and we will meet again one day because God made a way. It is only for that reason we can say, "Oh Death, where is your sting?" For though weeping may tarry through the night, may the Lord, Himself, bring the joy in limitless measure as we abide in Him and trust in His unfailing love.
My prayers have been short and to the point. They have been breathless and strained. They have been screamed and whispered. I find myself, not asking, but demanding that the Lord be good.
"FATHER, YOU BE GOOD TO US." I have pleaded on countless occasions these past few months. Maybe I am wishing to be struck down but, really, I am just a child asking her good father to be true to His nature. I am on the ground, a teeny thing, wanting His goodness to look a certain way but He is above and beyond and willing to let His goodness flow. If only I would trust that even if it doesn't come the way I expect, it will come.
Please pray for Ava.