Wednesday, December 30, 2015

Thank you so much for faithfully checking in on us. We are taking the advice of Ava's doctor and "enjoying her good health" for the time being. Our Christmas was incredible. Ava's uncles and their families were there. Both sets of grandparents were there. And, last minute, I called together my cousins and they dropped everything to be there too. So we were surrounded by sweet, intoxicating love.

During this time we also prayerfully came to the difficult decision to "watch and wait." It was the advice given to us by doctors from St. Jude's and Johns Hopkins. Our other, really bright and amazing, doctors who wanted us to get started on treatment also honored our desire to wait. In light of all the unknowns and toxicities with treatment, they felt it was a reasonable choice. 

So, we are waiting.

We're not just waiting. We are living too. But, I have never appreciated each moment like I do now. I sigh with relief every morning we wake up next to each other and I breathe out gratitude every night that we go to bed, the heavy weight of a sleeping child in each of our arms. I cherish each beautifully mundane moment we have. It sounds cliche and impossible, but it's the truth. We only have this hour, this minute, this second, so we try to hold it close and to live it well.

It will never be enough though. I want a lifetime with her. So I'm on my face every night asking the Lord to be kind to me, to give me the desires of my heart. My desire is to see this girl blossom and thrive. I am curious how her hair will look when it has grown past her shoulders. The radiation that nearly killed her, left her with beautiful curly locks that she often twirls with her little fingers when she is deep in thought. I dream about what she will be like in her teens and then in her adult years. I imagine we would be friends and that Gwen, Ava, and I would meet regularly for coffee and to shoot the breeze because I'm such a cool and relevant what I tell myself. I want to see her radiant face walking down the aisle to meet the man that is so freaking lucky to marry her and I long to experience the matchless joy she will know if God gives her the miracle of bringing forth life...there is so much more that I want for her. It hurts to know that we are mere months away from other immunotherapies that may eliminate the need for harsh chemos and may fight stronger and harder against the malignant cells that are threatening the life of our girl. Help me spread the word, please. If you are looking for a place to make charitable contributions, research funds that go toward finding a cure specifically for childhood cancers is a most worthy cause...says the desperate mom whose child awaits a cure.

For now, we will have her blood drawn weekly to check for any sign that her cancer has penetrated into her bloodstream. We'll also do a bi-weekly biopsy in hopes that we can catch these horrid renegade cells before they proliferate inside my daughter's otherwise perfect little body. We are in the process of drawing up our plans for chemo, transplant, which hospitals, and which trial drugs to use so when the time comes we will be ready to hit this cancer so hard that it will crawl up and die forever. 

That last paragraph sounded bold and confident but the truth is, I am so unbelievably scared. I feel like we are barreling toward this inevitable wall of pain and I am bracing myself for the impact. But there will be no consolation, no solace, no comfort when we collide with our greatest fears. We can hold out our hands and push Ava behind us so that we might take the full force of this angry, raging disease but it may crush us, our very hearts, while tearing her away from us.

Our souls are tied together, Ava and mine. They are so intricately interwoven that I don't know where I have left off and she has begun. It is this way with all my kids. So I don't understand how my love alone can not protect her from this relapse. Why don't my cells recognize the danger and, through brute strength, disintegrate her cells even from the distance that separates her unhealthy cells from my thriving ones? Or why can I not take her place so that she can have my blood coursing through her body while I take on her soul sucking cancerous blood instead?

It's been a constant battle of trembling in terror and, yet, laying hold of hope. My friend reminded me that "The one who has wiped away our tears, has shed His own. And He has triumphed." 

Somehow, my love has not been enough to cure her. But, somehow, God loves her even more than I do and He understands this wretched pain. The Jesus who wept, is the one we draw near to now. And He will have the victory. So I scrape myself off the floor and get through this season of pain...somehow. 

Our Christmas 2015 with Ava's aunts, uncles, and cousins

He can smile for days

The presence of God calms the storm

Jude: Woman, I only weigh a few pounds less than you. Please rethink your strategy.


Anonymous said...

I love how Pippi needed to get your beautiful family shot!
God is ever present and ever knowing! His answers are sometimes hard to hear, but listen as he whispers to you.
Enjoy each day, each hour, each waking moment

Unknown said...

Continuing to pray for all 5 of you from seattle. Your faith is such an inspiration to us.