Superstar Ava

We were told today that only a handful (like 4 children) are documented receiving TSET, total skin electron therapy. It's because it is really hard to do so most centers won't preform it on children.

All the equipment you see has been special ordered or specially made for Ava. This team has worked together for weeks trying to make this therapy available to her.

During the dry run, she had to put on lead goggles to protect her eyes. Not only was it disorienting and dark, it was also really scary for her. She started to whimper so we told her she was a super star.

"If I'm a super star, why can't I see? If I am a super star, why am I scared?" she said through her tears.

Walking out of the room, after all was said and done, Dr. John bought us coffee and donuts. His eyes were filled to the brim with compassion as he probably contemplated the lengths we were going to save our super star girl.

We know the chances are slim. We know that we may have to face unbearable pain in the future. But for now, we are so very thankful, so very humbled at the resources we have been given to try one more time.

You are a super star, Ava, and we are so very proud of you.
#superstarscancrytoo #soverythankful

Mike's letter to our church family:

Dear Brothers and Sisters,
Good afternoon, and I hope you had a blessed week in Christ!

We took Ava to the Radiation Consultation yesterday, and believe that the original plan to move forward with total skin electron therapy followed by second bone marrow transplant is the best course of action to take.

We now know much more about what the radiation procedure entails. The practice sessions went well, and the team is confident Ava will safely cooperate over the course of this three week treatment. Her radiology team should be ready to begin toward the end of next week.

Thank you so much for your prayers. We had been very uncertain of this plan, but now have peace to move forward with it. It simply seems that God is faithfully leading us to take even greater steps of faith. For example, the renown Radiation Oncologist is right here in Chicago, who said that this procedure has been done for only four other children in the past. Ava is actually the only child who is doing it as a precursor to a curative treatment plan rather than for end of life (palliative) support. Even the side effects are unknown. Yet the treatment plan has been approved and Ava is at peace.

The original idea of returning to Seattle for transplant in Mid-May seems accurate. Until we begin the radiation, Ava will enjoy the outdoors and the special feeling of being home, which was a very pleasant surprise for us all. She went back to school today, and I heard it's going well!

I will continue to keep you updated, and please let me know if you have any questions at all about this or anything at all related to family and ministry.

With love and thanks for you,
Mike

Happy Birthday My Girl

Here I am posting one day late because I felt so slammed yesterday that I went to bed at 10:00 p.m. The girls were still up, probably high on cake, and I asked Ava to get Gwen ready for bed. Yes, I asked my seven year old to put the newly five year old to sleep.

I just didn't have the strength required to see them through brushing their teeth, putting on lotion, changing into pajamas, reading a story, rubbing their backs...It seemed an impossible task to complete. My eyes did not even care that my request was so absurd. They did not care that I did not post something about Gwen's birthday--a post that I had already written, in my head, many times over the month, a post to document how incredibly proud and thankful I am of my resilient and joy-filled child.

But my battered, bruised spirit required some rest. Emily, Becca, Nicole, Melissa, Madeline, and Allistaire...daughters who have died, a daughter now dying. I am silenced by the searing white pain of these words. It is a day to celebrate the life of my child, of five breath-taking and messy years with my girl. And, yet, my friend is biding the time, urging it to move ever so slowly, as she awaits the handing over of her daughter to a place she cannot immediately follow.  This day, though a good day, has been a heavy one. It is hard to carry such sorrow even while traversing some of the most beautiful moments in life. This is the mom Gwen has today. Sometimes I wonder if it is enough. I question how this time in our lives will affect Gwen in the future. We know what is to come for Ava: learning disabilities, infertility, stunted growth, delayed puberty, possible baldness, forever dry and cracked skin, and possible malignancies that may claim her in the prime of her life.

But, Gwen, what about her? She was two years old when Ava was diagnosed with cancer. Fifty-one days later, with a small, muted party, she turned three. There she was a small, bright, wild flower still blooming amidst the gray all around. Most of my memories from the first week of diagnosis are a blur but I will never forget the day Gwen came to visit us at Lurie's. It had been several days since we had last seen her. She went from sleeping in small quarters, snuggled up near sister and mama and daddy, to being alone at night. My mom brought her to Ava's hospital room and I took one look at her and wept. She was wearing pants too short for her little legs, her eczema was out of control, and her nose was full of small hard boogers, all evidence that she needed me and I was not there for her.

Over the last few years of Ava going in and out of treatment, hair falling out and growing in again, time measured by procedures and relapses, somehow Gwen has continued to thrive through the dry and cracked soil of this season in life. She is bright and wonderful, emotional and raw. She reaches up during Sunday worship, eyes searching mine. If there are tears, she quickly wipes them with her baby hands, softly poking into my eyes to see if there is more. At home she has learned to tuck away into her imagination and play by herself when sister is at the hospital and there is no one left to play with. She still races to be first and to win and struggles with her desire to get more than she gives. But when it is required, when she sees that it means so much to sister, she will concede it all for the sake of a smile. She will squish her face into brother's and kiss and kiss until he screams. "HE'S SO CUTE!" she will cry out as an excuse when we've reprimanded her for being too rough. 

There are days when she must feel neglected. Our attention is turned toward sister who is very, very sick. Our arms are busy holding baby who is very, very needy. "Hold me," she cries. And we cry with her because it is hard to be in the middle. We are exhausted and stretched so sometimes the healthiest child comes last. We know she must suffer so much in that quick and smart mind of hers. Her thoughts must constantly churn trying to make sense of this world and of her life before and after cancer. But we long for her to know that her life means so much to us. It is hope that there is goodness still left after desolation. It is truth that God does not make mistakes. It is faith that love will not be crushed under circumstances but that it will flourish despite it all.

Gwen, You will read this blog one day. And you may wonder what part you played in our story. I want you to know that although your name was not plastered all over these pages, you were a central character. You held such an important role.  Your joy was the glue that bound us; your smile was the reason we got up day in and day out. Your new words, new creations, new discoveries were what marked the years for us. Life was worth living because your spark ignited in us the desire to go the distance even though the race was fraught with thistles and thorns.  

I want to wish you a very happy belated birthday, my girl! You turned 5 yesterday. How is it possible that another year of life has come and gone with such sweet kids by our side?

A recent conversation had Ava wishing she didn't have cancer, just like you. You turned around and said you wished you were Ava instead.

"Oh, Gwen, you should never wish to have cancer," I said, thinking that you were coveting the attention that Ava receives.

After a short, confused pause you replied, "No Mama. I wish I was Ava so that she won't have the cancer and I could take it instead."

My heart is humbled that instead of building up bitterness that much of your life has been shrouded by Ava's cancer, you have learned deep compassion allowing love to heal over so much brokenness.

Happy birthday to you, my youngest daughter. Your middle name is Day. Your Korean name means One Star. And that you are, a lone star shining through the despair, leading us into the break of day.
‪#‎happybirthdaysweetone‬ ‪#‎themedicineforourhearts‬ ‪#‎mygirlgwen‬

Gwen is Three! 

Celebrating Fifty-one days after Ava's diagnosis.

Gwen is Four! 

"Last year, we celebrated Gwen's birthday in the midst of Ava's diagnosis and this year it is shrouded again in Ava's illness. But this girl, she smiles. Boy, does she smile bright and it shines a light into the darkest tunnels of pain and grief. So we continue to celebrate life because what is living if we don't revel in the small things like love, laughter, parties, and Hello Kitty."

Gwen is Five!

A belated wish for the sweetest girl. It is another year of fighting for Ava's life. Yet, she takes it all in stride and prays that "Ava's line would be removed and cancer be gone forever." Amen and Amen. God, thank you for my girl, Gwen.

While many of us have the privilege of tucking our children in for another night, after another day of normal bliss, my friend faces the beginning of the rest of her life without her precious one.

This is the end we have prayed against since the beginning of diagnosis. This is the cup we have asked the Lord to remove. Yet, in His sovereignty, He has called Jai to it. He may call Mike and I as well.

If you have known the joy of being a mother or a father, please extend yourheart and your hands toward my brave and godly friend, Jai, and her sweet girl, Allistaire. We pray radiant peace in her passing and great grace upon everyone who is left behind.

Maranatha Lord. Come quickly for us, the broken-hearted.

Please read www.conglomerationofjoy.com and be encouraged by my sister's faith, and pray for their family during this desperate time. I ask that you not visit her blog unless you commit to praying for this family. Her words and her daughter's life deserve much honor. If you could please extend your respect and love by praying tonight, this minute, for Jai's family I would be eternally thankful.

Hold Me Now

It's 2:56 a.m. CST.

There used to be a time when night time was the best part. I could snuggle under the covers and let my body relax into the the soft and slumbering forms of all the good in my life.

Yesterday I dreamt that we were in a new house. I looked through the rooms anxious to see if there was a space for Ava. And there was! One room had her bed, her things all laid out the way she would have wanted. For a moment I allowed myself the joy of imagining life with her in it. It has been so long since I let this thought come and stay for a while. 

But there's also the recurring dream where I am in a building with many stairs and hallways. We have to get out but we don't know the way. Every door has the potential of being the wrong one. We are trapped and alone. We are trembling in fear.

Nights like that happen more often. It jerks me awake and I reach for her to see if she is there. I can only rest after whispering into her ear enough "I love you's" to elicit one back. Then I can be sure that I am not dreaming. She is really here beside me, breathing in and then out, all proof that her spirit is still very much on this earth with us. But I imagine a time in the future, when living becomes the actual nightmare...when night and sleep and dreams cannot come fast enough and does not last long enough.

Yesterday, Ava went to the hospital for her last push of chemo. It was supposed to take an hour max. We were still in the infusion center at 8:30 p.m., the only patient left for the night. Ava's platelets and red blood cells had fallen and she needed to be transfused. Laying in that small hospital bed, after watching the 3rd movie of the day, Ava fell asleep from the Benadryl she was given to combat the allergic reaction she had to her blood transfusion. My own blood had begun to churn as I felt anger building up at being imprisoned in this sterile room. The nurses that were slow to get the order in for her blood and platelets had become careless prison guards. The medicine pole she was tethered to became her chains and the inability to enjoy the day like countless other children, her punishment.

That same day my friend who had lost her son to cancer just 6 months earlier was celebrating his 4th birthday...without him there. As I posted to wish her son a happy birthday, I read a comment that made me stop and take a quick breath. "It is so heartbreaking...but at least he is not in pain anymore."

Thank God that FB requires typing, and typing requires words to be formed and fingers to move, and that requires time. Because time is what kept me from spewing back a slew of reasons on why the words "at least" should never be used when talking to a grieving parent. 

I don't want to sugar coat tonight. Cancer is the devil, this world is broken beyond repair, and the pain of losing your child is as close to hell as any believer will get to the actual place.

While I was laying in that hospital bed with Ava, a text popped up from my dear friend in Seattle, Jai. She was one of the first cancer moms I met when Mike and I were still shell-shocked parents numbly getting Ava ready for transplant. We shared about life over a cup of coffee. We got real, real fast. There's nothing like kids dying to get you to shed off years of facade and just get down to it. We shared our stories, our hearts, our tears. She ministered to me in ways that no one had been allowed to until then.

Her text told me that her daughter, Allistaire, had relapsed for the 3rd time after her 2nd transplant and that the disease was spreading quickly. Her baby, the one she has fought for over many years, would now likely die from cancer. Her prayer request was simple. "Pray for my faith," she said. She asked us to share this request far and wide to any person willing to pray for a fellow sister in distress, in the testing of a lifetime. If you feel led, please turn your prayers toward my sister, Jai. Please storm the heavens on Allistaire's behalf. Please.

We have talked often about how it is most likely that our daughters would die. Everything is stacked against them. Of all the types of cancers to get, of all ways the disease could have coursed, of all responses they could have had, our daughters have had some of the worst. But still, my heart wanted to hope. No, our daughters will live. I wanted to believe. But now this.

These are the years when our kids are still asking to be held. We are walking down the street and suddenly, they turn in toward us and step in front of our stride. "Hold me, Mama," they say. They look perfectly capable of holding their bodies up, they have been walking for years. But they'd rather be in our arms resting from the weight of the world, however light, on their little legs.

God, our burden is great. Our legs tremble from the unbearable pain of watching our children suffer and then die: touching the prickly fuzz forming on their bald little heads, listening to wails and moans that our embrace cannot quiet. It is agony to know that there is the very real possibility of seeing them take their last struggled breaths of air, feeling their spirits leave their bodies, tasting the bittersweet truth of what death on this earth means, what life eternal means.  

Allistaire is everyone's child because cancer does not discriminate. We were not a cancer family up to the second before we became one. There is no sorrow greater than losing your child. If there were, I believe the salvation story would have included it. But, no, the story of redemption and love holds the death of a precious son. God, you know this deep, searing loss.

We don't know how to do this. We don't know how to not lay down next to our dying children and just die too. We don't know how to stop fighting. We don't know why this is happening. We don't know how it will end. We don't know how it will be redeemed.

Yet we do know you, God. And I am asking, with arms stretched high, could you please hold us now?

AVA

Our friend, Marissa, was visiting Ava today while she got her chemo (Day 4-almost done. Yay!). She texted me this picture after she left and told me that she was at a super long red light when she looked up and saw this name in the sky. Wow. What a great reminder that God is ever present, even when the daylight fades to night. We pray for brighter days, more numerous than the stars.

"Your unfailing love, O LORD, is as vast as the heavens; your faithfulness reaches beyond the clouds." Psalm 36:5

Poby

Ava started chemo today in Chicago. The rest of us are still in Seattle getting ready to leave tomorrow. I found this picture and it brought me back to so many years ago when Ava used to be hospitalized for anaphylactic reactions and severe asthma attacks. We would grab her things, call 911, and be out the door with her teddy, Poby. He went everywhere with her but especially to the scary places like hospitals and ambulances. Over the years, he's been in CT-scans, PET scans, emergency rooms, sterile rooms, isolation wards, on gurneys, in hospital beds, in the operating room...

In those earlier years of her life, we weren't sure how she would survive her crazy allergies. But she did. And now she is allergy-free. Those of you who have watched as she was hospitalized again and again can attest to how miraculous this is for us.

In February 2014, Ava was diagnosed with Biphenotypic Leukemia, her cancer cells having characteristics of both ALL and AML. It is so rare that only 3% of all (pediatric and adult) leukemia cases fall into this type. They said her prognosis was poor. That was two years ago. She is still with us fighting today, Poby at her side.

After a successful transplant in 2014, she relapsed with aleukemic leukemia cutis almost one year out. The doctors said this type of relapse was not only rare, but really, really aggressive. Really. She's battling cancer for the second time, but now with a far more dismal chance at survival. Because relapse is bad, but relapse after transplant is worse, and relapse with leukemia cutis...well, that's just not fair.

Tonight, with Daddy by her side, and a whole world of people praying for her, Ava is going to kick some boo-tay with her first dose of her second round of chemo. Poby is still in Seattle with me due to a laundry mishap (as in, oops I forgot to do the laundry), but it won't matter. You see, Poby was my gift to her as a baby. A stuffed bear for my little bear. She doesn't have him right now but she has our love, all across these miles thinking of her, praying for her, loving her, wishing for her. That will be enough. Because Poby equals love, and we got that covered.
#teamavabright #lovewillwin #pobyandava

Promise

Yesterday was our last night together as a family in Seattle. Ava bravely made the trip back to Chicago with her daddy today. She wailed all throughout the airport. She said she couldn't do it without me.

"I'll be right behind you, Ava. I'll never leave you. I love you so much," I promised her as my heart weighed heavy at her distress.

There are days when I desperately want to lay down and give up. "I'm scared and tired. You're nowhere to be found and I need you more than ever. You promised to never leave or forsake me but why do I feel like you have?" I sometimes tell God.

I am Ava and He is me. Except His words aren't filled with fear that He won't be able to follow through. In fact, He paints the sky golden to show us that beauty can be found at the end of the day. He fills our bellies with warm food from countless friends we have yet to meet to remind us that we do not go alone. He replaces Ava's tears with giddy laughter when she finally arrived home to show us that there, too, will be an end to this chaotic chapter.

Tonight as I put only Jude and Gwen to bed, my heart gives way to a moment of panic. Is this what the future holds? Only two babies to love and care for when my body brought forth three...three souls.

I am hushed by His extravagant love. For who can deny that He has been good to us? So it will be in the days to come when we fumble around in the dark, we will see far into the horizon and watch as goodness soaks away the blackest of nights. And we will know that He is right behind us, never leaving us, always loving us.

Because a promise is a promise.

These girls have done really well despite the adversity they have seen at such tender ages. The credit goes to all of YOU and to God. Because the love. Oh the love was incredible.

Ava and Mike are on a flight to Chicago right now. Gwen, Jude, my Mother-in-law and myself will be following on Wednesday. We ask for prayers for safe travels especially as it is incredibly germy in the airports.

Seattle friends- thank you from the bottom of our hearts for showing us that the body of Christ is very much alive and working. And thank you for the love; it has carried us far.

Chicago friends- we are coming home!!! Even though the main goal is to return to Seattle we are so grateful for a reprieve in the middle of this fight. Ava has quietly cried herself to sleep on several occasions because she was so homesick. Looks like God heard her tiny prayers. It will be good to see her alive and well in our house...it will actually be a dream come true.
#weloveseattle #pippinherewecome

Chicago-Bound

Yes, you read that right. The Lees are coming back to Chicago. Ava didn't start chemo today as originally planned. She will return to Chicago to get her next round of chemo here in addition to radiation. Why?

There are still a number of questions, variables and unknowns, so your prayers for God's wisdom and guidance are coveted in such a time. Here's what we do know:

• Ava has had a significant decrease in her MRD, but the fact remains that disease is still present. While her response to chemo has been positive, she really needs to be disease-free in order to go to transplant, and that is the doctors' aim. This second round of chemo is to see if she can reach remission (MRD negative) to set her up for transplant.
• Leukemia cutis can be very aggressive and hard to get rid of. The transplant team strongly advises that Ava also get skin radiation in addition to the chemo. It would be best for her to receive this radiation before going to transplant (vs. after transplant). 
• Seattle is in the process of being able to provide radiation, but aren't currently able to provide that right now. So either way, Ava will get radiation in Chicago. 
• Since Ava really wouldn’t be in any condition to travel after chemo starts, she is coming back to Chicago to receive both chemo & radiation. 

The round of chemo runs 3.5 weeks or so, and radiation is close to 4 weeks. They don't want to do chemo and radiation consecutively (i.e. complete chemo first before doing radiation), because they run the risk of Ava's cancer growing unchecked without chemo during the 4 weeks she is getting radiation. This is risky if they want her to be disease-free before transplant. So, the thought/hope is that Ava can receive chemo and radiation concomitantly, at the same time.

However, it is unclear (to us) whether this is a good idea – can Ava's body take that kind of treatment? We don't know. It seems that all the doctors are a bit unsure as to the best treatment plan, so your prayers are especially appreciated and solicited!

What if Ava doesn’t reach remission after this round of treatment? What then? We don’t know. Should that happen, we'll have to reassess at that point. 

Ideally, Ava would come back this weekend so she can be home briefly before starting chemo on Monday. However, last-minute airfare is really expensive right now, so Mike & Ava are scheduled to come home on Monday (4/4) and start chemo on Tuesday. Esther & the other kids will follow back home this coming Friday. Esther’s parents will fly back to Chicago in a couple of weeks.

Please pray:

• for God's wisdom and guiding hand to be revealed in the coming days/weeks regarding Ava's treatment and the timing and coordination of everything. May God's will be done, according to His ways, His timing, His wisdom, and for His glory.
• for smooth and safe travel back home for everyone
• for smooth and uneventful treatment here in Chicago
• for the abiding presence of His peace for the Lee family, despite the unexpected turns that may arise
• for Ava's complete healing, should the Lord choose

Again, we don't want to pigeonhole God in telling Him how we'd like Him to work. God is much more creative and awesome in the ways He can orchestrate His amazing grace and unfathomable love in our lives. We trust in His unwavering goodness toward us. It is also this amazing love that allows us to approach His throne of grace with confidence, asking and seeking His intervention and help at this time.

Thank you so much for your prayers! We cannot underscore enough how much of a blessing you have been to the Lee family.

Results & Next Steps!

If you haven't already seen the Team Brighter Days Facebook posts from yesterday, Ava's PET scan and biopsy results are in!

This beautiful girl just got the best news! Her results have come in with significant changes for the better! Her MRD went from .34 to .007 and her pet scan has shown resolution of many of the tumors in her body. Although we still have to fight a little longer, we thank GOD for His great mercy and grace. And we thank you for standing with us in prayer and with so much love.

‪#‎thisgirlcanfight‬ ‪#‎Godmakeaway‬

To celebrate the fantastic news of Ava's results, we decided to make a trip to Vancouver. We made an unexpected stop to see the tulips.

It was the most amazing sight.

Isn't that life? Sometimes the most unplanned things in life can produce the most beauty. 

‪#‎beautyeverywhere‬ ‪#‎tohimbetheglory‬

So the plan now is for Ava to get a second round of the same chemo she just received. She will start that round tomorrow, and it will be another 8 days of chemo and then wait and see how it works in her body the following few weeks.

All glory and praise to God for His amazing work up to this point, and we trust Him for even more! We can not comprehend His ways, and they may not be the same as our desires, but we know that He is good either way. Thank you for your continued prayers, and for celebrating this great news with us!