Your Love, Oh Lord

And there it was again, on the last day, the largest rainbow we had ever seen stretching wide across the sky reminding us that God's arm is not too short to save.

364 days ago, we celebrated Thanksgiving in Seattle huddled around Ava's hospital bed. Our friend had ordered us a delicious meal from one of her favorite restaurants and we carefully opened each package and savored the familiar smells. We were in such an unfamiliar place. We were no stranger to the hospital setting, but this thing we were doing, this bringing our daughter to the brink of death with radiation to infuse her with a second chance at life was new, and scary, and lonely. 

With Ava's bed as our table, we spread out our thanksgiving feast and ate our pumpkin pie. I'm not going to lie, it felt kind of terrible to celebrate a day of thanksgiving in the very center of our pain and uncertainty.

Today, we are gathered around a table brimming with food and a house that is bustling with family. It's the real deal. And, so with hearts full we thank God for how far he has brought us and for his promises that precede even our darkest days and we remember, again, that he is faithful even when our world seems to be crumbling before our eyes. For how could we forget his faithfulness and love when he paints it across the sky for our eyes to see and our hearts to witness that he is good, his love endures forever.

#‎werememberyourpromises‬ ‪#‎forhowcouldweforget‬ ‪#‎yourlove‬‪ #‎thanksgiving2015‬

  

Remember Mercy

This is the rainbow that greeted us on our first day touring Disney world. This is the rainbow that promises mercy. Remember mercy, oh Lord.‪#‎wearesosmall‬ ‪#‎butyouseeus‬ ‪#‎rememberus‬

Re-Birthday

Happy re-birthday Ava Bright Lee (November 21st)!!! We have been gifted another year of life because of the simple and thoughtful act of a mother donating her baby's cord blood. We are thankful to that mama, and to you, and to God for making this last year an unforgettable one.

Chick-Fil-A Fundraiser

As any family walking the road of cancer knows, medical bills can be staggering. (That's even assuming that the billing process has been accurate and smooth with no errors...) Thanks to the efforts of some of the Lees' friends, a fundraising event for Ava has been set up at Chick-Fil-A in Kildeer, IL! 

Date: Tuesday, December 1st
Time: 5pm-8pm
Place: Chick-Fil-A (by Deer Park Mall)
            20429 N. Rand Rd.
            Kildeer, IL

Chick-Fil-A will donate a portion of proceeds to the Lee family for all orders placed during this time. You must mention Ava when ordering. (Please note there is no active soliciting of customers to do so the night of the event). The Lee family will receive 20% of proceeds if the total reaches over $1500 (otherwise there's a tiered system if totals are less than that).

Guess what? Gift card purchases count toward the total! This isn't typical, but Chick-Fil-A has generously allowed it for Ava. Please note that gift card purchases must be made in person, as credit cards will not be accepted over the phone.

The Lee family (at least some members, if not all) plan to be at Chick-Fil-A during the fundraiser, so come on out and show them your love and support and:

For those of you who are unable to attend the event but would like to support the Lee family financially, please see the Ways to Help page for more information. It also notes a new YouCaring donation site that was created by some friends of the Lees.

A Year Ago

At Disney now celebrating her one year transplant anniversary week. One year ago she fought hard for a chance to do what she is doing today- swimming, running, playing. She may have to fight again soon. Please pray that, instead, she would be healed and that she could keep enjoying her childhood just like a 7 year old should. Thank you for your love and prayers always!

November 18, 2014

Tell me, girl. How do you stay so positive? #firstdayradiation #daynegative4

Comments

I was told a while back that it is difficult to leave comments on the page. Sorry it took me so long to look into. I think the problem is fixed now so you can comment away! Thank you for all of your comments and thoughts and prayers for our family.

With love,
Esther

The Pain Will End

Before this whole relapse, we were barreling toward a goal. Time could not move fast enough because we were racing toward the finish line of Ava's treatment. Ava's one year transplant anniversary was quickly approaching and so was her debut back to school. We were making all kinds of plans to travel now that she was allowed to be out in public after one year of limited contact with the outside world due to her immunosuppressed state.

In one instant our plans changed and now we are gripping time in a death vice willing it to slow down. I'm savoring the days, the getting up and stretching, the kneeling down and praying, the getting breakfast, the appointments and schedules that shift with each day, the eating dinner, the playing, the baths, the bed time stories, and even the late night chatter that lingers long past bedtime. It's a gift. It's a gift. I keep telling myself this. So there are days I am so thankful for God's faithfulness to us and there is a peace that settles into the cracks of my devastated heart.

Yet there are days that are painful still. No matter how much we slow it down, things are still moving too fast. Now that Ava goes to school, time is even more precious and limited. I've tried to talk her out of going. It's not that great, I tell her. Because I'm such a great mom, I try to convince her to stay home and play with me. But she won't have any of that, not Ava. She carefully puts her homework away in her folder and tells me it's time for bed because she has to wake up for school. Oh God, it is so hard to share her.

They wanted a bedtime story the other day but it was getting so late. I told them, "There's always tomorrow." The weight of grief after those words was substantial and it shushed me into silence. The truth is, we can't rely on tomorrow. We only have today. It's not a lot but it's what we have, so we squeeze the heck out of it. She wants to hold the baby during his nap time so I quickly bring him into the room for cuddles because we only have today. Jeremy Lin invites us to a basketball game. We are graciously given choices: this Friday or Dec 5th? We choose sooner because we only have today. We expedite the Disney trip we had planned for February to this Tuesday...We only have today.

A few days ago we dropped Ava off for her first day of school. She flashed us her toothy grin with her four permanent teeth growing in all crazy and kissed us goodbye. Then she was off, walking down the long hall toward her independence. Mike, Gwen, and I sort of slumped back to the car and then decided to go to IHOP to quell the emptiness a bit. We asked for a booth for three and sat down to order breakfast. "I miss Ava. I want to go see her," Gwen said as soon as she sat down. And instantly, before I could even stop it, my mind had gone to a place where Ava was no longer here. It was a fierce pain to imagine a day when we would long for her, to kiss her, stroke her soft cheeks, tousle her wavy hair, and want to hear that laugh that captures our attention and our hearts, yet without any consolation we would have to gulp down the bitter reality of her absence.

I'll let myself go there sometimes. I can't stay there long but I feel like I need to visit these feelings to prepare myself. I think about how this could be our last Thanksgiving, our last Christmas, our last vacation, our last...I'll drive down the street and wonder how we will stay in this neighborhood if she is gone. I stare at her from across the kitchen counter while she talks and I burn her image into my head because I fear there will be a day I frantically look for her and my memory will be the only way to see her. 

I reason with myself that maybe if I can slowly ease into this pain, it won't hurt so much if the time comes. It's the most stupid exercise I've ever participated in. There is no such thing as being prepared to live life without my first born child. And my precious Gwen. How will she cope? She is already lost, wandering the house looking for her sister when she's away at school. How do we tell her that no matter how hard we search, we won't find her here anymore? There is no amount of practice that will soften the blow. And then I break down, right there in the car, like a crazy person. Tears streaking down and the same sentence on repeat, "I can't, Lord. I can't, Lord. I can't."

I'm beginning to see that I don't have to. I'm not called to imagine the worst to see if I can deal with it. God has no expectations for me to do this well. He knows this pain. He once endured it himself. So he doesn't need me to explain to him how much this hurts. 

My sister-in-law recently had her second baby and Ava was really concerned when we talked about a complication she had while giving birth.

"Is it really painful?" she asked. I nodded "Yes." 

"Well, the pain will end. Right, mama? And now baby Stephen is here!" she said.

Yes, My Love. The pain will end. It will always end. Maybe not on this side of heaven but there will be a time and a place where there will be no more room for pain. And the pain that was allowed will produce something so beautiful that, one day when the purpose is revealed, we will step back speechless and with hands raised we will praise the Father for his perfect handiwork and marvel at all that he has done. 

After the excitement of meeting Jeremy Lin, the girls fell asleep in the car and so we transferred them over to bed with their #teamavabright shirts still on. It was a good reminder to wake up to. This season of pain is so excruciating but, God, truly let it only be a moment in time. We pray for unending joy to rise up with the morning sun.

"He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever." Revelation 21:4

***************

We have found another lump under Ava's lip. We won't be able to biopsy it before our trip to Disney because it will require a plastic surgeon. Please, please pray with us that it is absolutely NOT leukemia or any other type of malignancy. Thank you so much for your prayers.

Lee Family 2015

Kenny Nakai was with us from the very beginning, making us smile even while our hearts were breaking. I reached out to him about 2 weeks before we received news of Ava's relapse. I was hoping to get a family photo session with all of us happy and healthy now that Ava had reached her one year post transplant anniversary. Even though Ava's body is still fighting hard, we have joy in ways that are otherworldly. We have this moment, this memory, this lifetime. Thank you for these pictures, Kenny. They mean more to us than we could explain.
#‎batteredbutnotbroken‬ ‪#‎beautifullife‬ ‪#‎bestillmyheart‬

Ava and Crew Family Photos

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.