Every Hour

At the clinic, taking our first step in faith by pulling Ava's PICC line. We were told it would be easy enough to replace if we needed it in the future. But for now, we got plans...like taking baths, swimming, and holding Jude! We know God can work miracles but in the meantime we will abide in his timing and continue to trust that all will work out for the good of those who love him.

What good could come of a situation like this? Well, for starters, there's childlike faith, deep gratitude for every moment of life, and beautiful spontaneous hymns of praise.
‪#‎Godleadtheway‬ ‪#‎weneedyouLord‬ ‪#‎everyhour‬

A New Song

Happy first day of school, Ava Bright Lee.

"He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the LORD." Psalm 40:3

Sanctuary of Hope

Wednesday. We got the confirmation of isolated relapse in the skin on Wednesday, right after our second Red Robin date, just as we were transitioning the kids' playhouse back into a shed for the winter. Mike was carefully tetrising all of the bikes, toys, and bins away so that we could access them again in the Spring. We took the call inside of the shed huddled close together so that we could hear the words being conveyed over the speakerphone.

"I'm so sorry. Seattle has confirmed isolated relapse in the skin. We have a few options..."

We sat on the swings, the very swings where we have pushed our children toward the sky hearing them squeal with delight at the freedom of flying. Mike and I stared at the ground and the tears formed. How could this be? How could we make these decisions, all of them worse than the other?

Yesterday, we went back to Lurie's for a PET CT to see what our real choices were. If the PET revealed leukemia in her body we decided we would purse the most aggressive treatment. If the PET was clear, we would be at a crossroads again. We watched as they injected her with radioactive sugar and then laid her down on the table as we have done many times before. She looked at me and asked me not to go and I promised I would stay with her until she fell asleep. And though she hates sedation, she nodded her head and closed her eyes as the medicine set in. There were still unshed tears in the corners of her eyes and I wiped those away because I didn't want them to fall when I wasn't there.

She woke up beautifully in the recovery room and I was pretty dang proud when the nurses praised her up and down for how well-mannered she was. I wanted to tell them that she was a pretty special girl and they were lucky to have her as a patient but I decided to exercise humility and just smiled when they told me she woke up calmly, looked around, and said "Hello, I'm hungry."

We got the good news that the PET came back clear except for one small unusual spot in the lungs that is likely from a virus. The doctor told us our options again and together we agreed that we would not be pursing a second transplant at this time.

We do not understand God's ways and sometimes it is tempting to believe that the life that we were handed was a cruel twist of fate. Thank God that we don't believe in fate and that we do believe in a God that is so good. A God that sacrificed his only son for a world that despised him, a God that had to turn away because of the pain when Jesus hung on the cross, a God that absolutely could have saved his own Son but chose to withhold his hand out of his love for us...

I have circled back to the story of Abraham and Isaac through different avenues this week. Whether it was my own personal reading, or the story the kids wanted to hear at bedtime, or through a conversation with another cancer mom, it has come back again and again to minister to my heart. Look, I don't believe I have faith like my forefathers nor do I consider this a blessing right now, but I can't deny the spirit of peace knowing HE walks with ME just as he walked with Abraham during the most impossible scene.

This very benign looking lump was biopsied the same day Ava's Hickman line was removed. The same moment we ended her transplant journey, we picked up the next journey and it was not what we anticipated. We thought we were headed for glorious normal days but instead we were given relapse. Why? God, are you so cruel that you would allow our day of celebration to be stolen away by grief again? No. He is not a God of cruelty or confusion or chaos. He does not delight in my sorrow. His word says that he collects our tears and records them in his book. Jesus intercedes for us at the right hand of God. And God listens to the pleas of his people.

Don't get me wrong. This is not easy. We have been on our faces, screaming out that God would take this cup. But, in the well of our darkest sorrow, we have found sanctuary in his word and in the hope of his promises.

So...what are we going to do? Let me first explain what Aleuekmic Leukemia Cutis is. This very rare disease is simply the presence of leukemia in a site other than systemically in the bone marrow. There is hardly any literature on it so there is no protocol to follow. Our doctor has reached out to doctors across the country and into Canada and the UK. Experience with it has been limited to a few cases and everyone that is mentioned in literature, save two people, eventually relapsed in the marrow and died within 3-12 months after initial diagnosis.

But, through tons of prayer we have decided to watch and see. It is the preferred option of at least 4 of the doctors that were consulted. We have given chemo, radiation, and stem cell transplant a chance, and there has always been a clear, "best" decision. This is the first time we get to consider several options with no "wrong" choice. One of them is to wait and see. Does this mean we are giving up? Absolutely not. We are giving Ava the gift of time and life and joy and hope.

One doctor said it perfectly. She said throughout her many years of practicing, she has seen miracles. We have seen them too. Ava is a miracle.

After we were done with that phone call, Mike went back to rearranging the shed so that their toys could be brought out in the spring and I looked at him like, "Why does it even matter anymore?"

But now, I understand. It matters because there is hope. We have hope that we will brush away the twigs and debris of our past and step into a new season of life. Oh Lord, quicken that day and let it be so.

_________________________________________________

FAQ:

Have you looked into immunotherapy and have you heard of the baby that recently went into remission from her aggressive cancer?
Yes, thank you to everyone who has emailed us this interesting article. At this time, it is only available for certain types of leukemias. Unfortunately, due to Ava having Biphenotypic Leukemia she does not qualify. We hope and pray that in the next few months, breakthrough therapies will be discovered to help all cancer patients.

Why not go to transplant again?
Transplants are very difficult and risky procedures. I know Ava has made it look like a cake-walk but she beat a lot of odds just to be here today. She's just amazing like that. Reality is, second transplants often are toxic and fatal or can leave you with a host of side effects that would severely diminish quality of life. Should she relapse in her marrow, we may reconsider this option at that time.

Does Ava know?
We have decided not to tell her. We believe that fear is toxic and this information is a lot of burden for a 7 year old to bear. Instead we will carry it for her. We will cry, plead, and worry on her behalf. She can just go ahead and enjoy every day like any kid should.

How can we help?
Wow. We just want to say that we have been overwhelmed (in a good way) by the love. Seriously, we are BLOWN AWAY. We aren't sure what we need right now but, as we know, we will ask our good friend Patty to help coordinate. Thank you again for the prayers, calls, texts, tears, support, and love. We don't deserve it but God is good and he has shown his favor on us through you. One thing is for sure, we ask for prayers that Ava would be given a miracle and would live to give God all the glory. 

So, really, what will the next few months look like?
Well, we anticipate living life. We will let her go back to school. We will spend lots of time as a family. We might even go to Disney. We'll go to church, play, learn, laugh, cry, whine (I won't name names), and love. Most importantly, we will live each day out giving thanks early in the morning and late in the night.

"We will seek You first, Lord

You will hear our voices

Early in the morning and late in the night

We will sing Your praises

Giving You the glory

Offering our lives to You, a holy sacrifice

May our praise arise as incense

Oh Lord, to You

May our worship be a fragrance

Oh Lord, to You" - Shane and Shane

Visiting with their favorite cousin, Joseph, in Champaign, IL. 

Ava was a bride for Halloween. But we pray to see her radiantly walking down the aisle one day in real life.

Holy Moly, we are blessed. Mostly because our kids are so cute but also because I found red jeans with a short inseam.

Ava doing what she aspires most to be in life- a cashier. You can do WHATEVER your heart desires, girl!

Jude's hat is pink because we believe in recycling.

Ugh, I caved. I CAVED!!!!

I just can't even...

Red Robin, THANK YOU for understanding food allergies!

Fly, Ava.

Shutting down the playhouse for the winter and turning it back into a shed. 

A precious picture of my 3 loves at the Ohare Oasis...because that's a quality vacation spot. Don't knock it till you try it.

"Look at me, mama!" Always, Ava. I will always look and be amazed at what you have accomplished in your 7 years on earth.

"See my name tag, mommy?" Yes, Gwen, thank you for wearing that sticker. I want creepy strangers to know your name when you go fearlessly running off from me.

Ohare Oasis--we will pass this experience down from generation to generation.

Resting in daddy's arms after PET CT scan.

Must copy mama in everything.

They fight all day and then they sleep like this...like an old married couple.

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.

Results Confirmed

Thank you for waiting on our update. We got the call from Seattle yesterday but needed time to process and spend time as a family. I can update more details later but, for now, Seattle has confirmed leukemia in her skin. We have some hard decisions to make.

Please pray with us that God would give us wisdom and that he would show unfettered compassion and grace to our precious girl, Ava.

Red Robin

Our second Red Robin date! It was an added bonus that the weather was rockin'.

Ava, I love how polite you are to the servers. You make me look like a good mama despite what reality is.

(From Esther):

I was planning on starting a blog series on how far we've come since last year and I was looking up ideas for Ava's one year post transplant party when I got the call regarding relapse.

That's life. You can plan all you want but life doesn't always follow your agenda.

Today we went to Lurie's to have the doctors look at some potentially new bumps on Ava's skin. The dermatologist gave us the good news that he doesn't think it is any more leukemia cutis. We are still awaiting results from Seattle but it is looking more and more like the removed cyst contained leukemia cells.

Right now, the most specific thing you can pray for is that Ava's new immune system will fight off these rogue leukemia cells and that, indeed, there are only a few floating around that can be cleaned up by her new system.

I can't write much these days because I can't get my head around all that's happened. It's a good day if we've all eaten and the kids have enjoyed themselves. So for a few days I'm going to just chronicle what I love about my girl, Ava.

Today, I remember and honor your kindness and your kisses. I'll soak every one of them up, I promise.

(From Esther):

We have seen things while on this journey. Really terrible, sucky, horrific things that children have had to endure. We've seen emaciated children thin from diminished appetites, we've seen big bald heads and equally big haunted eyes staring out from cancer ravaged faces, we've heard children moaning into the night from uncontrollable pain, we've seen parents hold down their child while a needle is stuck into their spine to draw out fluid, we've heard the ragged cries coming from defeated parents when they are told unspeakable things. We have seen things.

But nothing makes me want to vomit, makes me want to scream and pound my fists, to give up and die than at the thought of my girl being scared that she has to leave us behind and go alone.

"I was so scared mama. I had to say goodbye because I was going away for a long, long time and I didn't want to leave you," she said when I woke her up because she was crying and whimpering in her sleep.

God, we can only take so much. Our hearts, they will break beyond repair. They will tear, and bleed, and explode from the pain. So, please, envelop her in your perfect love that casts fear away and, if you take her from me, please don't let her cry for even one second.

I have been waiting on this post for some time now...It's been a struggle to know what to divulge because 1) we don't have our second opinion yet and 2) it is really painful to ponder. BUT, I have decided it's time to say something so that your prayers might be specifically targeted toward our specific needs.

It seems Ava has relapsed only in her skin, according to the pathologists at Lurie's. They saw leukemic cells in the skin and with special staining saw that the cells were consistent with T-Cell ALL. Her marrow and spinal fluid are clear. This is a very rare condition called Aleukemic Leukemia Cutis. I shouldn't have googled it. I feel sick to my stomach and, I'll share vulnerably, it takes everything in me to convert my thoughts to hope rather than the impending feeling that this is the beginning of the end.

ALC can precede any disease to marrow and peripheral blood and by the time it is diagnosed it can be a dismal few months before it becomes fatal. At this time, there is no solid plan in place as we are still seeking a second pair of eyes from Seattle to look at her cells. One treatment plan would consist of a second transplant, and most likely it would be a haplo-identifical transplant which means that they would use either Mike or myself to be her donor. Does this sound crazy and last ditch? It's because it is.

We humbly accept your prayers that Ava's skin would miraculously not show any leukemic cells when looked at by Seattle. We pray that this is a very sick mistake. Our sweet, brave girl has been through hell and we are pleading for her to have a break.

But, if this is indeed ALC, we pray that she would beat the 80%+ odds of failure and that she would rise up against this and fight with all the strength that her little body has left.

We are in Champaign now enjoying our ignorance and spending precious time with family. I went to large group for the first time in years and the sermon was about dreaming dreams for your children until they are ready to dream them for themselves. I admit, the minute I got the call, I stopped dreaming for Ava and I spent time in mourning.

I want to dream big things for Ava. Because no matter how far the fall is and how painful it will be if they are not realized, I want to hope for her and to point her toward joy and love and God. As long as she has breath we will stand by her and choose to live and live and live even if we'd rather just die.

(We have not told Ava anything yet, so please refrain from emailing or discussing any details of disease with her. We want to let her have as many days possible enjoying herself.)

**********

(FB post from Mike):

I'm hoping, dreaming, praying for an honest mistake. I've never so desperately wanted an error or mishap to have occurred. I'm imagining all the good that can come out of someone messing up. Thank God no one is perfect.

No Definitive Results Yet

(From Esther):

Some of you may have been waiting for an update for many hours now so I want to thank you so much for your patience!

We actually updated via the blog but decided to take it down because the explanation was getting a little confusing. The truth is, it is a confounding situation. Ava's marrow did not reveal any disease! But the pathologists in Chicago are certain they detected leukemia in her skin. Apparently to relapse only in your skin is incredibly rare. We will not have a game plan until we get a second opinion from Seattle regarding the skin.

We thank you for praying with us during this waiting period. We pray that Ava's biopsy would reveal no leukemia cells in her skin and that no further treatment would be necessary.

Happy candy day from a bride, Elsa, and a disgruntled monkey. <3