Saturday, February 13, 2016

Hope Is A Box Of Diapers

We are almost out of the diapers I bought from Costco in December. I remember hesitating before picking up the 180 count box. The marrow relapse in Seattle was so jarring and disorienting that simple life decisions weren't so clear anymore. It was true that Jude needed diapers but I wasn't sure if I should just buy a smaller pack at Jewel. It felt safer to stick to smaller case we would have to pack up and move our lives back to Seattle. In the midst of such huge decisions we needed to make regarding Ava's care, this diaper thing totally stumped me.

I decided to buy the larger pack that day, but I doubted we'd get through them. Finishing the box would have meant that Ava had been healthy enough to live in Chicago for at least 6 weeks. This would contradict what we were told when we left Seattle, opting not to treat her immediately. Our intention was to come home to celebrate Christmas before heading back west to begin intensive treatment for a disease that would likely return. Our doctors were wonderful and gave their full blessings but not without the warning that this choice could significantly alter her options if the disease progressed quickly while we were home. But with trembling hearts, we put our family back on a flight to Chicago because we needed to do right by Ava. Sometimes making the right decision can look so wrong to everyone else. But we knew that blindsiding Ava by turning a trip to Seattle into an extended stay with no end in sight would have broken her spirit. So we came home, we relished the familiarity and we continued to pray for clarity. Then one bone marrow biopsy after another showed that the disease was somehow being held back from overt relapse.

It's now February and I just bought another Costco Supreme, size 4, 180 count box of diapers.

Hope is...buying and getting through a Costco sized box of diapers.

I should probably end my post here. Because the truth is, my hope is still so small. I wish I had more. I wish there was so much that I wouldn't lay awake at night crying into the pillow fearing her death. I wish there was enough to cover me during the day when I brush her hair and tie it up for the first time in two years, only to imagine it falling out and this time not being able to see our promise fulfilled-that she will live to tie it back again one day. I wish there was enough hope that all the sickening statistics that tell me that my girl will die from this wretched leukemia cutis, won't send me into such depths of sorrow. That as I touch her head and feel one, two, three bumps that are suspect for more LC, I wouldn't want to simultaneously puke and scream and cry. I wish it wouldn't wreck me to know that this aggressive leukemic clone may not stop growing on her skin and will threaten to reseed her marrow again and again and again no matter what we do to stop it.

We see her running around, finding joy in this and that. It is so so hard to believe that her body is turning on itself, determined to self-destruct, forgetting that its sole mission is to keep her alive. And we are humbled, heads bent low to the ground, knowing that we are powerless against what rages in Ava's body.

I am usually awake at night between the hours of 2-4 a.m. I want to say that I'm praying and it looks pretty but it's more like silent wailing, ugly crying, asking God if my fears are true, that we are somehow dispensable to him. That somehow in this whole transaction he forgot that we were still balancing between light and dark, mere fragments of who we were when we began. Did he leave us hanging in our fragile state simply because he forgot? Ugh, I know it is lies and more lies but as I hold my child close in the night wondering how many more days we have together, it is not difficult to be utterly lost.

We went to the radiation oncologist today hoping to hear that we might be able to push back against the leukemia cutis by targeting radiation just to her skin. Instead, we came away with the knowledge of the horrible side effects of radiation. One being, literally burning away her sweat glands to leave her skin completely powerless to moisturize itself.

"Do you know how it feels to have extremely, flaking, dry skin in the winter? Imagine that for the rest of your life," says the kind, well-meaning doctor. Oh my God. What have we done to you, sweet Ava? We have left you infertile, growth stunted, and now our hand is pressed against the choice to ruin your skin, your beautiful, soft baby skin. When you make it through this, will you wish we had made different choices for you, precious child?

We also left with the recommendation to immediately image the bump on her cheek that I had been eyeing warily for the past week. I know Ava so well. My eyes scan her from head to toe every morning and I poke and prod hoping to come across nothing in my daily checks. But recently as I looked at a picture of her smiling wide for the camera, I saw it. "There, right there. Do you see it?" I asked Mike. "It's so subtle but the rise of her cheek on one side is different from the other," I explained.

"Yes, I see it," remarked doctor after doctor in the past two days. Ugh, ugh, ugh. It is not good, not good at all. I will not go into details about why because I'm just so tired. But we need prayers that it would be something simple, like an impacted tooth. And not another leukemic growth inside the bones of my girl's lovely face.

She had been talking about how excited she was to watch the assembly of the 3rd graders singing. Of course, timing would have it that when I picked her up for her doctor's appointment, she had just sat down to begin watching the show. She fell asleep in the car with tears streaming down her cheeks that she had to miss it. The very next day was her Valentine's day party and her face fell when I told her that she needed to go with us to the radiology consultation. She looked up with tears forming again and told me it was okay because there would be other parties to go to. And I wanted to run out of the house and scream up toward the heavens that this was more than our hearts could handle. How much lower must we go before we can unbend our knees and tilt our faces up toward his face shining on us?

Ava wanted to join an after school club and she excitedly told me all about it. She had me fill out the paperwork and attach the check. I did it willingly as I saw her surge forward with such radiant joy. We were turing in her paperwork kind of late. The thought of her heart potentially breaking when she found out that the club was filled, prompted me to tell her that there might be a chance that she wouldn't get to join. I wanted to buffer the blow, just in case. I knew it was a mistake when her beautiful eyes turned down and she quietly said, "Mama, I wish you didn't tell me that. I just want to believe it will happen and if it doesn't, I can be sad then."

I can unintentionally be an unbelievable a$$ at times. I profusely apologized but not without being totally schooled by her again. She teaches me things that I should know by now-things I should be teaching how hope moves beyond what should be and reaches for what could be.

She made it into the club and I'll never forget her squeal as she turned to me and said, "See, I just knew I'd make it!"

I am hoping, against all hope, that we will look back at all this one day and say the same thing.

Door to door service

It is a joy to see her grow

Sitting with the help of daddy

Sad to be missing out on school the Valentine's Day party

Dr. John-one of the kindest doctors we have ever met

We made it to the party!!

These are the best years of my life

I can not even handle the cuteness

These two.

This family makes my heart soar (We love you too, Jude! It's just that you had to every time we took a picture)

With my love, Ava


KC said...

I love reading this and I hate reading this...I was awaken today due to a late night call for my husband's restaurant. Burglary alarm:(
I am in tears reading your blog & heart is broken for you. What strength and honesty and vulnerability and love.
I have heard of your family's journey through mutual friends & extend my prayers to you. Press on sister!

Anonymous said...

Isaiah 43:2
When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.

Anonymous said...

Hope is reading a blog and sensing and seeing His joy, peace and clarity in your family. :D
Love you all & a very Happy Valentine's Day.

Joo Park said...

I had tears in my eyes when I was reading... But I see a lot of laughs and smiles and happiness too. I learn so many things from your family and keep praying for you!

Anonymous said...

I don't really remember what was said to me ;), but good to see that the Spirit of God is still working over there. Press on. =)

Anonymous said...

Praying for Ava!

Here is a link to an article about a new treatment for Leukemia that is in the experimental phase, but is showing amazing results!