Saturday, January 30, 2016

I tried to write something funny for this picture (because, I mean it's all kinds of funny). But my heart is not in it.

I've been desperately pleading with the Lord. I want Ava to stay with us. I want her to no longer fear what the leukemia will do to her body. I want to not have to cut away any more of her flesh in an attempt to stop the cancer. I want her here with us this spring when we take the bikes out of the shed. I want to know that this painful season will end and there will be space for joy in her life.

For how will we carry on if she is not here with is. It's unimaginable. The pain takes my breath away and keeps me up at night. This suffering is too much and I am too weak.

God, carry us across the years, over the sadness, and into the good you have planned for us.

Friday, January 29, 2016


We just got done with our 4th movie night of the week. Currently the girls are still up playing. Teeth are not brushed, meds have not been taken, their games are nowhere near finished and there are bursts of yelling every now and again. It's all good though. The view from this bed down to the floor where they play is lovely. So incredibly beautiful.

The results are back. The skin lesion that was biopsied is leukemia cutis. I wouldn't google it. It's not an encouraging read. But, the grace part of it is that her MRD status remains stable. We are hard pressed to make the right choice, the best decision for our love, Ava.

Since her MRD is stable, and the risk of relapse after a second transplant is high with leukemia cutis, we are opting to continue watching and waiting. We will go to that place, if we need. But for now, we will enjoy the view.

Thank you for your prayers. We need them so much.

First words out of her mouth as she looks in the mirror. "Oh. My. Goodness."

The more I get to know her, the more I am convinced she will change me; she will change the world.

We don't have any results back yet but we do have tons of pictures of the girls having the best day EVER thanks to Auntie Heather Rocen and Auntie Valerie Rocen!!

Today was the much awaited trip to American Girl Doll Store for lunch and a shopping spree. Ava started the morning off with nausea and pain from the biopsy incision. The whole car ride she was moaning in the back seat and I thought I would need to turn around and head home. Thankfully we didn't and when we entered the store, her eyes lit up like a Christmas tree. Normally the day after a biopsy is filled with anxiety but today we were surrounded by love and happiness! Thank you, to Christine Young, Heather Stites, Valerie Rocen, and Ann, from the bottom of our hearts! ❤

With Auntie Heather Stites and Auntie Valerie Damerjian Rocen. This mother/daughter pair is amazing!

With Ann, the best personal shopper ever!

We just needed the song "Pretty Woman" in the background and I'm pretty sure we could have shot our own movie.

This is what a happy kid looks like.

Heather Stites took the day off of work to make sure these girls had smiles on their faces the whole day long. #blessed

Happily perusing the aisles with personal shopper, Ann!

Having to make some tough choices...

Enjoying our 4 course lunch at American Girl Doll Cafe with the beautiful Rocen ladies!

"If only my mom would take me to get my hair styled..."

I (Esther) love this child (Ava). Not to be confused with Ava loving her bitty baby child-which is also true.

With the newest member of our family, Olivia Delaney Lee. Her middle name is in honor of Ava's favorite transplant doctor, Colleen Delaney Forehand.

Best Day Ever.

Monday, January 25, 2016

A Little Update

I don't have much to report yet but we did see the dermatologist today and he recommends that the skin lesion be biopsied. We are hoping that the skin biopsy can be done at the same time as her bone marrow biopsy this Wednesday.

On Thursday, Ava will make a trip to the American Girl Doll store for lunch and a shopping spree set up by my good friend, Heather. Ava is very excited and has been looking forward to it for some time now.

Despite all of the crappy stuff that is going on in her body, Ava spent another day playing hard and laughing a lot. She only cried once and that was because she felt like she didn't have enough alone time with me before Gwen came home from school. After 10 minutes of playing with Gwen, she came up to me and said, "I guess it's not SO bad that Gwen is back." Leave it to her to feel guilty about normal sibling all ended well in her world today. That's enough for me.

We should know more by Thursday or Friday of this week. Thank you for standing with us in love and prayers.

Ava had a tummy ache this morning and Pippin came over and put his head on her belly. Ava was very pleased that her therapy dog finally did something therapeutic for her. 
#earnyourkeep #pippinlove

Saturday, January 23, 2016

Prayers Please

It's been a while since our last update. I suppose no news is good news. But today we have some requests that we humbly ask prayer for.

A few nights ago, we found another possible leukemia bump in Ava's skin. She has been complaining of joint pain and nausea the past week as well. We will be seeing her dermatologist on Monday for a formal exam. Then on Wednesday she will have her 3rd biopsy since relapse in the marrow.

It is painful and scary to see that the leukemia is possibly on the move. We ask for prayer that Ava would continue to see bright days and lots of laughter. We also pray that Gwen and Jude would adjust well to any changes that are on the horizon.

Thank you, from the bottom of our hearts, for your prayers and love.

Thursday, January 14, 2016

Don't Delay Love

One year is short. It's only 12 months. Only 12 marrow tests. We are moving from testing her marrow every 2 weeks to just once a month now that she's had stable counts for the last 2 tests. It feels oddly freeing that we'll live in blessed ignorance for four weeks instead of two. It will be glorious to know the feeling, however contrived, of normal. In the meantime we will continue to do weekly checks of her blood counts to make sure her labs look good.

A few days after we learned of her relapse, we went to Costco for household staples. Even though our lives were falling apart, life betrayed us by still moving along. The baby d
idn't stop needing diapers. We didn't use the toilet any less. We put both girls in the cart and moved about the store going through the motions. The store was full, yet it felt so painfully lonely. 

At one point, Ava reached her arms out toward me and asked to be held. I picked her up out of the cart and carried her in my arms all throughout the store. I felt the burn in my arms but I took great comfort in it. The pain I was feeling meant she was alive. She was with me, all 38 pounds of her clinging to me. And I clung to her, needing so much to feel the weight of her small body in my embrace. Will there be a day that I long for one more day to carry her close, to smell her hair, to feel her tiny heart beating right next to mine?

A week ago, at her last biopsy, Ava woke up from surgery and asked me to hold her. I picked her up out of the bed and held her once again. 

"You know, one of these days you won't want me to hold you anymore."

I am super sentimental. So I say this kind of stuff all the time. Her usual response is something like "NO! Mama, I will never feel that way!" But this time was different. 

"So, hold me now."

She quietly whispered this life changing nugget of wisdom into my ear.

I often look to the future anxiously, anticipating all the hurt and the trauma, the anguish and the heartbreak, so much so that I miss out on the joy of now. There is joy. Here, right now. And this pain that is present, that means that there is something worth fighting for, something worth aching for, someone to love.

Ava challenged me that day, as she often does. Don't delay love. Go, go, go. Drop everything and run to your little one and cherish him. Pick up the phone and call your aging parents. Email your brother and tell him you love him. Hug it out with your husband after unsavory words are spoken. Be kind to your annoying tween. Say "hi" to your neighbor. Make time for your friends. Because life is short, after all. A year is only 12 months long.

Life is really hard. (Ask Jude.) But it is also good. So very good.

Friday, January 8, 2016

We received Ava's MRD results last night. Her marrow shows disease at .03%. Although it looks like progression from the last .01% status, her doctors have told us that this increase is insignificant so we Will continue to watch and wait. Thank you for all the prayers pouring in for her from all over the world. We are grateful for each day.

Sunday, January 3, 2016

This Place of Thankfulness

Saturday, January 2, 2016 11:20 p.m.

It has been 68 days, 11 hours, 20 minutes, and 25 seconds since news of Ava's relapse. We were given way more time to carry on with normal life than the average person who relapses with cancer. 

Not going to lie...I have been faltering a lot these days, just sitting in the "what if's". The statistics are not on our side and any healing without treatment would be considered a miracle in the medical world. I'm not skeptical of miracles but I am confounded at how God works and whether a miracle would be given to us.

We may be drawing closer to the fellowship of parents that we hoped we would never have to join. It is a sacred circle of families that have felt devastation and anguish in a way that we could not have imagined in our early 20's before spouses and children and love. It is the literal dying of bodies and the impossible earthly goodbyes that is happening in reverse order when young children lose their future while we, adults, continue to age and age without limit while longing to die.

Ugh, I could sit in this space for quite some time if it wasn't for the joy that bubbles up from all the living that is happening around me still. She is well. She is happy. She is laughing. She is running. She is sleeping. She is breathing. She is breathing. She is breathing.

So I give thanks with all my heart because once the thankfulness ceases, the darkness comes rushing in hungry to devour all joy, all gratitude, all hope. The bible instructs us to be joyful always because it points our eyes back to the One that is beyond time and space and is greater, far greater. When my focus is there, the other things, they lose their sting even if it is just for that sweet moment when I am lost in the wonder of His amazingness. 

I want to start this new year giving thanks. So, here it is. There is much to say.

1) I am thankful for time. 

These days, these moments, these seconds, they count. All of it matters and is precious, each one. I am thankful for the time to play, to bathe them, to cuddle them, to read to them, to brush their hair, to pick out their clothes, to make their dinner (in the microwave-let's be real), to pray with them, and on and on.

I can't get over the fact that we are still living as normally as possible under the present circumstances. It is tempting to pretend that it was all a bad dream and that our days right now are the real deal. She looks so healthy that I want to deny there are cancerous cells lurking in her bones. But they are there. And, yet, something is keeping them at bay. I'd like to think it is the actual hand of God holding back the storm for an undisclosed amount of time because of His grace. 

This sounds so trivial but the past week I cleaned the house furiously. I went through every room, picking and sorting and packing and storing. It was therapeutic and scary all in one. Decluttering is not just a way to make more room in this small house but it is a way to physically let go of all the stuff that we think will make us happy. It's a way to pare down and realize that things are just things and will never fill this gaping hole in our hearts. It's terrifying though, when I search deeper and uncover the real reason behind all this cleaning. I think it's my way of preparing for whatever is going to come. It's like my body already knows that if Ava were to lose to cancer, I would never have the heart to clean out her room, to give her things away, to even throw away the tiniest scrap of paper that might hold a scribble that she's drawn. It is with desperation that I fold away her clothes, give away things that she's outgrown, throw out broken toys that may later be so hard to part with knowing she once played with them. 

We have a bone marrow biopsy coming up this week and we pray that her marrow shows no new growth of her cancer cells. If there is progression of the cancer, the tentative plan is for just me and Ava to go to Seattle. This means that I would have to leave behind my sweet Gwen and Jude...So I put up the baby gate, lowered the crib, washed all of Gwen's clothes and put them away neatly. I washed sheets, cleaned out the garage, sorted the toys neatly because I need them to sense my touch and my love even it if it's just in clean clothes that fit, neatly organized toy bins, and safety near the stairs. It's the least I can do for them.

I am thankful for time to prepare. 

2) I am thankful for the meals that were sent. I entered the new year 4 pounds heavier than the week before. Normally I lose weight during stressful times but there was so much food in this house between all the meals that were sent and my mother-in-law and my mom cooking that we put on weight just by smelling the air. It's the most satisfying weight gain I've had in all my life, though, because it is a direct result of all the love that has been poured out on us. Thank you so much to everyone who has brought a meal, dropped it off in the cooler, and then texted me feeling bad that they didn't make enough for the party that we were presumably having. They probably thought that because of all the cars in our driveway. No need to worry; the food was just the right amount. We just have a disproportionate amount of cars.

3) I am thankful for all the generous donations that were given to us during this whole journey. There used to be a time when I would get all sweaty and nauseous thinking about how insurance was not going to cover this or that. We're still getting the crazy hospital bills (did you know that a transplant costs one million dollars?) but God has taught me, through you, that His provision is real. 

Thank you, also, for the clothes that so many of you handed down to us. It's strange but buying clothes is one of the hardest things to do right now. I used to love shopping the sales for next year's clothes but now it's just another painful reminder that the future is uncertain. Last year, instead of buying school clothes for Ava, I bought 8 pairs of pajamas knowing that she would be in the hospital for most of the time. This year, I walked out of Old Navy in tears clutching one shopping bag for Gwen and Jude. 

Grief is...buying only two new sets of clothes for the spring when you have three children.

Thank you for sparing me this unbearable heartache.

4) I am thankful for friends that don't shield their children from sadness. Ava's best friend from school, Sooha, has frequented our home in the past few months. They were separated for so long while we were in Seattle and even when we got back due to Ava's isolation period. When she hit her one year mark, Ava begged to have Sooha come over and play. They had several sleepovers since then and any time I texted Sooha's mom, she was here within the hour to play. I am so very thankful for parents like Sooha's who don't shelter their children from possible pain, like the death of a friend. Instead, they let their child play with mine and by doing so gives us the greatest gift of all: selfless love. And, Ava, oh how she smiles and delights in the simple joys of childhood like having a best friend to whisper secrets back and forth with late into the night.

5) Finally, I am thankful for insomnia, crying babies who have lost their binkies, and dogs that have to pee in the night. Because when I can't sleep, I can pray. It is well with my soul when I am in the throne room of the One and Only, the loving Father, who gently dries the tears, restores our spirits, and quiets our hearts. Thank you, Father. You never slumber. You never sleep. 

1:27 a.m.

It has been 68 days, 13 hours, 7 minutes, 45 seconds since Ava's relapse and she is currently in the next room with Sooha dreaming away. Thank you, God.

Thanksgiving is long gone, but remembering His goodness has propelled us to this place of perpetual thankfulness.

"Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus." 1 Thessalonians 5:16-18

Pretending to want to build the gingerbread house when all they really wanted to do was eat the candy.

Sleepover with Sooha watching Paul Blart: Mall Cop. #dontjudge

Saturday, January 2, 2016

Be Joyful

Ava was coughing through the night so I asked...

Me: Ava are you having trouble breathing?
Ava: (groggily)'s a productive cough.

I've been thinking of things I'm thankful to the Lord for. It's been making this season a little easier to get through. Today I am thankful that Ava will fly through Med School one day.
‪#‎bejoyfulalways‬ ‪#‎itshard‬ ‪#‎butwearethankful‬