Tuesday, August 30, 2016

A Bright Life

The day I found out I was pregnant with Ava, I ran my last 5 miles and promptly turned in my running shoes. I didn't give a backwards glance. There were better things to look forward to than races and training and runner's high.

I think back to that sacred space right after marriage and right before kids. It seemed like things couldn't get better, like my life had just begun. But then came the day that I took a pregnancy test and I somehow saw color seep into what had actually been a two-toned existence.

I kept my first secret from Mike as I cherished the knowledge of her presence to myself. I planned out a special way of revealing this way-too-good-to-be-true news but, in the meantime, I wanted time with her.

Just me and her and God.

I would talk to her as I walked outside, whispering my excitement and joy. And I promised her I would be a good mama and that I would protect her and cherish her. I thanked God for giving me such a beautiful and holy responsibility.

I would care for her better than I would care for myself, I softly spoke this to her in my sleep and in my waking hours. Two days later, I revealed Ava's existence to Mike and we reveled in our secret together.

Just Mike, Me, her, and God.

Soon came time to prepare for her. So we bought the best car seat and we assembled her crib. Our family and friends threw us magnificent baby showers and we received so many gifts of love. As the weeks got close, we laid out her clothes, diapers, toys and her bear, Poby.

And then we waited. We impatiently awaited her arrival.

She was born on August 14th, 2008, one week after MIke's birthday. She was tiny, beautiful, soft, and perfect. After lots of kisses, cuddles, and pictures, we did what every parent does. We named her.

Ava Bright Lee.

We had searched long and hard for a name that would bless her and describe her and give her identity.

Ava=Life

A Bright Life.

Yes, we nodded to each other. She would live a bright, happy existence and her brilliance would point people to God in an unmistakable way.

Yet, on this very night, she is curled up in a hospital bed, forsaken from normal society: her growth stunted, her fertility stolen, her head bald, her schooling paused, her innocence stripped, her body battered.

This is nothing like what we had envisioned for her. It is as if we had named her something entirely else.

A Broken Life.
A Bruised Life.
A Bankrupted Life.

I will not mention all the hellish things she has gone through in the past years of her life. There is too much to say. There is too little space here.

But just in the past 72 hours, we watched fluid fill her little body to the point that it hurt to walk. We watched as her eyes slowly lost its sparkle. We watched as doctors and nurses poked her again and again in her private area, as they failed to properly catheterize her. We watched as she cowered in fear, rolled up into a ball to escape the many hands prodding her. We watched as her pain grew unbearable and she screamed out for medicine, begging for more and more morphine so that she could sleep it all away. We watched as her kidney function worsened and her body braced itself for kidney failure. Tomorrow, we will watch as she goes through another procedure to drain her left kidney.

I am not the mama I had promised to be. I am powerless, helpless, hopeless to help her. I can only watch in horror as she is devoured by this disease.

So, this is where our faith matters. Either God is for us. Or He is against us. Either God loves us or He doesn't. Either God is good or He's not.

This is where we either die from the pain or we rise up like a phoenix out of the fire. And, Oh God, the fire is so, so hot.

Yesterday, Ava turned to me suddenly and told me that a phoenix will go through a fire and then come out again more beautiful than ever. She had just woken up from a long nap. Shortly after, she went back to sleep. I don't know why this was on her mind or where she had learned the legend.

This is not the bright life we had in mind for her. In fact, it is so dark that we stumble hard. We cry out for God to spark a flame so that we can see what is in front of us. Just a glimpse, Lord. Give us one peek into the future so that we can endure the now.

But maybe we are thinking of it all wrong. Maybe the bright life we dreamed for her, wasn't really hers in the way we thought. Maybe her life is meant to light the path for someone else, someone who is lost.

I can't tell you how much this sucks. I want to succumb to the suffering when I see all that she has been through and all that is to come.

Yet, the thing is, we already know the Way. We do not need the extra light. So we hope that her life would be a beacon call for so many others looking for the way Home.

And, though every fiber of our being blanches at the thought of walking another step on this wretched, mangled, thorny path, we put one bloody foot in front of the freaking other. Altogether now.

Just mike, me, her, you, and God.

______________________________________________________

Ava, you are like the phoenix. You burst forth from the flames and out pour the brilliant colors that have come from the gray ashes of your pain.

We love you, Ava Bright Lee. You are leading a Bright Life indeed.


Ava Bright Lee

First picture with Mama

Uncle Matt and Ava

Uncle David and Ava

First outing as a family of three

Dada and Ava

Our pudgy, happy baby!




Monday, August 29, 2016

Renal Function

If you've been able to keep up with the Team Brighter Days Facebook page, you know that Ava's been going through some rough times since returning to Seattle this past Monday, the main issue being unexplained abdominal pain and then decreased renal (kidney) function.
Thankfully, there is no sign of CNS relapse or remaining solid tumors. What a relief, considering Ava was complaining of headaches and even vomited. Praise God for such great news!; it's hard to constantly be wondering if her symptoms are an indication of worsening disease, so for now we are grateful that her CNS looks clear. However, her MRD is up to 0.2% (from 0.09%), so the very fact that the levels are increasing at all can be disheartening. Still, we do not take these praises for granted and give thanks to the Lord for His mercy and grace.

The last couple days have been filled with concern around Ava's kidney function, as she has been retaining fluid and not able to completely void her bladder. Her creatinine levels kept increasing, indicating possible worsening renal function. The doctors were puzzled as to the cause of her abdominal pain & decreasing renal function. The concern was that the cause could be multi-faceted, so they wanted to proceed with caution, not jumping into any one remedy with the expectation that it would effectively address Ava's overall health issues as a whole. As Ava's creatinine went from 2.1 to 2.6 overnight on Saturday, to 3.4 on Sunday afternoon, the decision was made for Ava to have surgery. The surgery would allow the doctors to see if there were any blockages in her ureter(s) and place stents in her ureter(s) as needed. The surgery revealed blockages in both ureters near the bladder; a stent was successfully placed on the right side, but the left side was inaccessible so Ava will have another procedure tomorrow (Monday) to have a direct drain placed in the left kidney. They were also able to place a catheter to aid in urination.

Already, Ava is looking better and is being relieved of a decent amount of fluid. She was put on nasal cannula oxygen earlier today to help boost her oxygenation since it dropped to the low 90's. Thankfully, a chest x-ray didn't show anything of concern, so any difficulty breathing may have been due to the weight of the extra fluid. In the meantime, Ava is feeling rather uncomfortable with these drains in her as well as from the stent/catheter placements.

Hopefully, the right kidney drain placement tomorrow will adequately drain the rest of the fluid, and resolve her previous symptoms. It is still a mystery as to what caused all of this in the first place. In the meantime, Venetoclax has been held so as not to compound the situation in any way and to allow the medical team to more accurately determine what's going on. This means that Ava isn't getting any treatment right now to combat the cancer, which is always a little nerve-wrecking considering how aggressive her disease can be.

While the Lees were in Chicago, they had the opportunity to meet with the cancer team at the Children's Hospital of Wisconsin in Milwaukee to discuss Ava's treatment options and haploidentical BMT in particular. They ended up making the difficult decision to transfer Ava's care from Seattle to Milwaukee as soon as possible. The main reason is to be closer to home; it's taken quite a toll on the family - the kids especially - to be away from home for so long. As much as the Seattle community has been an amazing family away from home, they also see how quickly Ava could improve just from being out of the hospital, and all the kids' desires to be home again. They desire to be home as well. So the decision on where Ava would get the "best care" isn't an easy one, as there are many factors involved, and not all of them are purely medical. With this transfer of care in mind, the Lees returned to Seattle in hopes of wrapping up their chapter there and packing up their stuff. With Ava's recent development and hospitalization, it's hard to know if/how/when they might be able to return home, but that is where their sights are, Lord willing.

In the meantime, thank you for praying with the Lee family:
  • for Ava's continued and full recovery; for insight as to the cause of her pain/renal issues so it can be addressed and resolved
  • for Ava's cancer to be cured/eliminated, and no further growth despite not being on any chemo right now
  • for Gwen and Jude, that they might be patient in this time of being away from their parents and being separated as a family
  • for God to work it out so the Lee family can return home quickly
  • for the Lee family to follow the Lord in whatever steps He may lead
  • for God to be glorified and praised in all circumstances
The Lees are incredibly thankful for the community of support they continually find in each one of you, whether you are family, friend or stranger. Thanks for faithfully engaging in spiritual battle through prayer. You have a vital role in their journey.


Thursday, August 25, 2016

Happy Birthday Ava, Again and Again

When we first learned of Ava's relapse, we read that most patients with aleukemia leukemia cutis passed away between 2-12 months from diagnosis. That was in October...it is now August.

Ava has consistently confounded doctors with her resilience.

We truly thank God for these days. To be able to celebrate her birthday this year is nothing short of a miracle.

When we asked Ava what kind of party she would like, she told me that she'd like to have a Chopped Challenge party. The backstory to this request is that Ava and I spent many hours watching the Food Network when we were holed up in hospital rooms. It began during her transplant stay. I was 6 months pregnant when we first entered the hospital. We stayed there for two months. For that third trimester of pregnancy, I remember laying on a hospital couch after Ava went to bed, watching Chopped Challenge while eating hospital Mac and Cheese. Soon Ava picked up my affinity for these cooking shows and somehow she added it to her eclectic mix of tv programs, toggling between My Little Pony and Cut Throat Kitchen in any given hour.

I told my close girlfriends in Seattle to expect Ava's birthday to be a Chopped Challenge theme. So we anticipated cooking around the kitchen island in the home we were staying at.

But, Ava's Seattle aunt had different plans. She contacted All Recipes and told them about Ava's brave fight and her wish to have a Chopped Style birthday party. They wrote back that it would be a pleasure to host it for Ava.

From the moment we arrived, to the moment we left, our jaws were dropped wide open at the lengths they went to make sure Ava's 8th birthday was amazing. From video cameras, to secret ingredients, to famous chefs as judges, the All Recipes team poured their hearts into this celebration to make it as realistic as possible. When I looked around the room, I saw so many beaming faces and not a hint of exhaustion from all the hard work they put in. But what was most touching was when we got ready to leave. The many people involved in planning out this special day thanked Ava for allowing them to be a part of the day.

This is love.

When we got home to Chicago, my friend Stacey, President of Cal's Angels, reached out to me about granting Ava a second wish due to her relapse. Stacey and Tom founded this organization in honor of their son, Cal, who passed away from AML in 2006. Their story is so inspiring because out of their loss, something so life-giving was formed.

When Stacey heard that one thing Ava wanted to do was throw a birthday party and invite her classmates, she got straight to work to make it happen...and she pulled it off in one week.

Not only did Ava have the most incredible gymnastics party with an amazing magic show at the end, but Stacey and her team attended the event from start to finish. They dedicated most of the day on Saturday running around taking pictures, being a host to all the guests, and making sure everything went smoothly for Ava's wish. After all this, Cal's Angels also gifted Ava, Gwen, and Jude each an iPad Pro. It was unbelievably generous but also totally inline with what Cal's Angels is known for: going above and beyond not only for the child with cancer but also, and more importantly, for the siblings. (I may or may not have swiped an iPad from one of them with the excuse that they needed to learn how to share...Just kidding?).

When we got back to Seattle, we were greeted with such hoopla from our Seattle Family and many friends who sent their birthday wishes to Ava.

From care packages sent by our good friend Marissa, founder of Hope for Children, to cookies and cakes from Esther and Dave Chang from Momofuku, to a boxful of new books sent from Auntie Ling, to a fun excursion to the Seattle Seahawks training facility with our friends Sharla and Rocky-assistant head couch, to extravagant gifts from friends in Seattle, we have been showered in love.

Whenever I lose focus and my eyes begin to see the rocky road before and behind us instead of the gracious Father, I begin to grumble and groan. I wonder if we have lost favor in God's eyes.

But then I remember you, and my head snaps back to attention and my hands raise up in surrender and in praise. To the one, the only living God who has not forgotten us.

I know this is true, because there is you. Yes, there are gifts and special trips and cool parties and neat surprises but under all that is you. You are God's tangible form of love to us.

And, oh, how extravagant His love is.

*Please check out the Team Brighter Day page for more pictures from all these events!

Friday, August 19, 2016

For Such A Time As This

Surprise!!! We are at home in Chicago this week. It was intended to be a quick break away from labs and hospitals while we awaited Venetoclax to work. And, to be honest, I really, really didn't want Ava's only trip home to be on hospice. So as soon as we got the okay on Tuesday, we bought tickets to fly home on Saturday.

It feels like we are stirring awake from our nightmare. Waking up in our own beds and walking this familiar floor plan, seems like a dream come true. We know it is temporary but something about being home brings hope for many more years with Ava.

Yet, there are still daily reminders that we are living out the most uncertain days of our lives. These past few nights, Ava has been crying about the pain in her knees and in her head. We are left with doubt wondering if Venetoclax is even working.

I've been thinking about the story of Queen Esther these days. She rises suddenly from out of nowhere, an ordinary girl turned queen. But it is not without a divine plan, a story that was orchestrated before time began. As the narrative unfolds, we find that Esther is in the exact place, time, and position to save all of her people in the land. And, the crazy thing is, she goes for it.

It looks heroic and brave from this side of it all. But I can imagine the heart thumping fear she encounters as she steps up to the throne of the King, wishing she was somewhere else, wishing it was someone else in her place. I can imagine the terror that must have gripped her by the throat as she wondered if she would die that day. But I also see the determination of this young girl to obey her calling.

Though our lives in this generation might not play out as dramatically as Esther's, we learn through her how we ought to position ourselves to carry out God's purpose in our lives.

As the second child to ever receive this medicine, we realize that it is experimental. We know that Ava's results will give much insight into the medical world. When we reached out to one of the doctors following her case at St. Jude's, he was so excited about Venetoclax and what it might do for the future of leukemia. But it is so new that even St. Jude's has not begun a trial of it yet.

So it is with fists clenched tightly that we hand over our beloved treasure for someone else's benefit. Maybe what the doctors learn from her disease will save many other children from suffering in the future. Perhaps, children diagnosed as early as next year won't have to lose so much quality of life because of what we learn from all the children bravely entering trials today.

Perhaps, we have come this far, for such a time as this.

One year ago, Jeremy Lin sent Ava a card. He had heard of her story through a friend of ours and his response was to sit down and write out an encouragement to her. In November, after she had relapsed, he invited her to a game where they met face to face for the first time. Since then, they have kept in touch. I will always remember her hunched over her little pink laptop, typing away with two fingers, intent on writing to Jeremy but struggling with her limited spelling from missing so much school. I can imagine Jeremy, typing away on his own device after a busy day, tired but intent on responding to Ava's questions and many emoticons. Because, honestly, the girl types two sentences and then fills the rest up with different smiley faces. :)

Last week, Jeremy stopped by for a visit. He and a few of his family/friends sat with us for a while. Ava and Gwen tried to stump him with (corny) jokes, and Jude just sat around in his Jordan jersey (he's so passive aggressive). When I came back to the table after stepping away, I saw Mike laughing with these men who chose to lean into our lives when we were probably the most scraped up we had ever been. I can't tell you why Jeremy decided to befriend Ava but I can guess it was in obedience to God. And perhaps it was all orchestrated for that moment when Ava and Mike would create a special memory together with one of their favorite basketball players during our most fragile season of life.

Perhaps it was for such a time as this.

We go back to Seattle on the 22nd to see how well Ava has responded to this treatment. Yesterday we traveled to the Children's Hospital of Wisconsin for a second opinion regarding transplant. The reason we are considering transferring hospitals is because if we are embarking on the end of life for Ava, we want to be close to home. We spent hours discussing Ava's case in Wisconsin and the verdict came out the same. It is unlikely Ava is curable. But we can try; we can go down swinging if we choose.

So it is here. It looks like we are heading into the final chapters of this story. Of course, our stories continue into eternity as we anticipate life forever with God. But, I won't lie; right now, there is fear and sorrow. There is unmistakable turmoil. We desperately throw down every anchor we have and pray that God will hold us still during the storm.

Yet there is also joy as we see Ava live with abandon and courage, delight and wonder. And there is all of you, entering the Throne Room with us, pouring out prayers for Ava, reaching into our lives with your kindness and love. These days have been filled with incredible moments thanks to all of you.

The next few posts will express our gratitude to all who have jumped into the arena as we fought cancer the last two years. In anticipation of this, I asked permission to share about Jeremy and Ava's friendship in order to thank him.

The response was this: Yes, but please direct the focus to God.

I could not have asked for a more suitable permission.

Thank You, Father, for 8 years with Ava Bright. Thank You for almost one year of life after relapse. Thank You for every person who spoke into our lives. Thank You for every prayer uttered on Ava's behalf. Thank You for every gift of love offered to bring Ava joy. Thank You for every day we woke up to her smiles and for every night we've fallen asleep to her breaths. Thank You for being near. Thank You that death does not win. Thank You that love will.

And thank You for preparing our faiths for what is to come.

For such a time as this.







Sunday, August 14, 2016

Come

We are still here! We are alive and well and, dare I say, thriving!! It's weird to be in this place. It's wonderful to be in this place.

Making the decision to try Venetoclax instead of intense therapy to transplant wasn't easy. Mike and I didn't sleep for many days. We went back and forth, writing lists and more lists, lifting up prayers upon prayers.

Then Ava got sick and the decision was kind of made for us. We thank God for that. It's been a little over one week on Venetoclax and we couldn't be more glad that this is the choice we made for Ava.


Since I last updated we've been living like crazy. We went to the zoo, celebrated Ava's birthday with our Seattle family, blew bubbles, celebrated Mike's birthday, watched Jude poop in the swimming pool, watched the Blue Angels perform, had a perfect Seattle summer day with our Mercer Island family, visited Dr. Delaney at her new lab, blew bubbles, had communion with a slice of sandwich bread and red dyed water, snapchatted ridiculous pictures, played in an RV with precious friends, pranced around in our swimming suits, rode bikes in the same swimming suits (because is there anything better than that?), drove to Portland with Jude wailing the whole time, saw Auntie Jai, hung out with Jeremy Lin, played Astroids, flew kites, chased food trucks, and most importantly, we counted each day as a blessing.

A few nights ago, despite all this living, I broke down. "I want more," I told Mike. "I want years and years not just days and months."

This is the thing. We do not know how much longer we must tread. We do not know how we keep stepping forward.

We just know that when we look down, we are actually walking on water. It is a miracle we are standing at all.

"'Come,' he said. Then Peter got down out of the boat, walked on the water and came toward Jesus." Matthew 14:29

Come. He calls.
Yes, Lord. We follow.

Water is not easy to walk on. But it's not our feet that carry us anyway. It is God, Himself. And though the night is long, and our knees tremble at the weight of what we carry, and we are so incredibly tired, we know where we are headed.

Onward, straight towards Christ.


Wednesday, August 3, 2016

Venetoclax

Yesterday Ava began her first round of Venetoclax. She swallowed 10 pills and 10 today. When we get the okay to increase her dose, she will be swallowing 20 pills a day.

This girl is made of steel.

We decided to go with Venetoclax, a very targeted therapy, for two reasons:
1) Ava wished to stay out of the hospital.
2) She caught whatever bug Gwen and I had so it was too dangerous to start high intensity chemo at this time.

We are told that we can switch to high intensity at the first sign of disease progression. We pray that we would be able to catch it before it spreads to her CNS or her skin.

So this is really scary for us. But, there is also so much that we gain from being home together.

We have time. We wake up next to each other and fall asleep as a family. Our days are spent in close proximity with every member. We witnessed Jude's first steps together! We've been able to lean in close to Gwen and salvage her broken heart from years of instability. We will be able to celebrate Ava's birthday with a party in just a few days. We watched many beautiful Pacific Northwest sunsets from the beach close to where we are staying. We have been able to taste how sweet it is to live as a family of five.

In the comfort of our Seattle home, we also have had the chance for real conversations deep into the night, all four of us (sorry Jude) cuddled together. Last night was no exception. As we got the girls under the covers, Ava had more questions. There is so much she is hungry to know.

She starts again the same way as before.

"Not saying this is going to happen, but would it hurt if I die?"

Mike and I look at each other while we digest this question. I answer.

"Everyone dies. For people who may not be prepared for death, it may hurt. Like if you get into an accident. But, if you know you are going to die, there are ways to make it so that there isn't any pain."

There is silence while she processes this answer.

"Kind of like when I get sleepy medicine?" she asks.

Mike and I tallied up the times that Ava has been put under general anesthesia for a procedure. We came up with the rough estimate of 35 times, but it is probably more. We hold her while the medication begins to take effect and she whimpers that she is scared. Then her body goes limp in our arms. Without fail, she whispers "I love you," and all the unshed tears roll down right before she becomes dead weight. We wipe the tears; we lay her down. It is agony. Thirty-five times we have endured this. Thirty-five times.

"That's right. I believe it will feel just like that. We would make sure there is no pain. It would feel like falling asleep," I say with confidence and strength but really the fight in me feels weak. I want so much to be talking about something else. Maybe My Little Ponies or plans to visit her grandparents in China. This topic is crushing; it is a slow death to our hearts. But we are determined to talk about it as many times as she needs.

"Mama, if that happens, can you not cry until I'm sleeping?"

"Why, Ava? Would that make you scared and sad?"

"Yes," she replies softly.

"Okay, Ava. I will not cry until then."

"Thanks Mama. I love you," she says before closing her eyes for bed, just like in the operating room.

Our tears flow after she has fallen asleep. Both Mike and I cherish these conversations and simultaneously mourn them. We stay up late into the night, unable to sleep, each with our own thoughts, prayers, fears, hopes.

It is dark and we feel like the only ones still up in the silence of the dawn. Yet, God's presence is even heavier than the hurt. He is there, perhaps even cradling our heads as we muffle our cries and whisper His name. I reach my hands up to the ceiling. I need Him to hold them through the night.

One of Ava's favorite movies is Joseph: King of Dreams and her favorite song, "You Know Better Than I" is from that soundtrack. Early on in her diagnosis Ava told me that if God doesn't heal her, she still believes that He has something better planned for her.

God, help me let go of the need to know why.

For Your ways are higher than mine.

video

Beauty For Ashes


Ava has been wanting to talk about heaven more and more these days. We've had some brutal conversations these past few days.

But, somehow, they were laced with beauty. Knowing she is not scared of death is tremendous. It's peace that transcends all understanding. It is God's goodness to us. And, it is a gift she is giving straight from her soul to ours.

Her birthday is coming up and she has been wishing and wishing for a small puppy. I reminded her that she has Pippin. She told me that she has room in her heart to love both.


This morning when she came up to me to ask a question, I thought it was going to be about the puppy again. I turned to her, ready to lecture her about the need to wait for that wish.

But this is what she said instead.

Ava: Not saying this is going to happen, but if I die...what would you do with my body?

Me: (trying to maintain composure) What would you like us to do, Ava?"

Ava: Well, I think it would be scary to be in a graveyard. So do you think you can make me into ashes?

Me: (with tears) That's what I was thinking, Ava. Then I could take you wherever I go.

Then she smiled really big.

She has changed my life forever. She has led me to a deeper relationship with Christ. She has removed the veil between heaven and earth so that we can see life for the temporary time that it is. And she has conquered the fear of death.

Our precious child, who should be looking forward to a full life ahead, is gently planning for the end of life.

We continue to pray that He would extend her life far beyond ours, so that we might be the ones waiting for her in heaven.

May God, in His goodness, honor her life, her faith, and her fight.

May beauty come from these ashes.


Taking a Leap of Faith

I'm not going to sugarcoat. We have really been struggling these past few days. We've been wrestling non-stop with the options presented to us for the next round of chemo.

Because Ava's cancer is so rare, she's never really fit into standard protocols. Doctors have scrambled to keep her alive these past 2.5 years using different regimens and even moving to newer drugs when conventional medicine failed.

But now that we are up against the wall, Mike and I have been invited into the conversation. We are asked questions like "What is your end goal?" "What intensity chemos are you comfortable with?" "Are you looking to prolong life or are you looking for a cure?" With every question comes an answer that changes the course of treatment.

For the longest time, Mike and I have been treading water. We have been doggy paddling not only our own weight but we each have a child on one arm, maybe even two. We are exhausted, barely alive ourselves. We watch one dip under the surface and we frantically pull him/her up only to see another one bob down. We huddle together to find a better strategy that ensures we all stay afloat but there is too much weight. We have worked hard to stay buoyed for so long looking for reprieve, only to find the storm is coming and one wrong move could drag us under.

There is so much at stake in every decision. There is so much cost to cancer. So we carefully consider our options. We swim to this side and then the other looking for firm footing. But the reality is, these choices really suck and it is too much for a parent to have to choose. We are asked to decide the circumstances surrounding how we want our child to live, how we want our child to die. We have oncologists, social workers, the palliative team, so many people offering their expertise but it boils down to this: it is my girl. How could you choose, if this child was yours?

Ava's results came back really good. Her lung nodules have almost all disappeared save for one small one. Her MRD is down to .09%. It looks like Mylotarg did some damage. But it is still not enough. She is not in remission.

We sat with Ava's oncologist last Tuesday and he gave us our options. We could choose high dose chemotherapy (Fludarabine + Cytarabine) at 5 times the dose she's received in the past plus another round of Mylotarg. There is a 60% chance of infection and possibility of death from those infections. She would be in-patient at the hospital for 4-6 weeks or until count recovery. We would move quickly to second transplant with more intense chemo to wipe out her marrow and bring her to the brink of death. Then, we would slowly infuse her with another cord blood in hopes that this time, this time it will work. Yet, after all this, there is still less than 20% chance she will live. Back in October, when Ava's beloved transplant doctor explained the risks of a second transplant, she cried. There would be damage, she said. We would not walk away unscathed.

Or the other option is to try Venetoclax. This would keep her out of the hospital. It would offer better quality of life. She could celebrate her birthday in 3 weeks. There is theoretical evidence that it could work. BUT there is no data. She would only be the second child ever to have received it. The dosing would be, at best, an educated guess. The actual treatment is considered investigational meaning there is no data, other than an ex vivo study, that promises efficacy . If her disease progresses through Venetoclax and spreads to her skin and spinal chord, she would be disqualified from transplant. At that point, we might try to pursue immunotherapies but there are no pediatric trials yet. We would be looking at more experimental therapies.

We have brought these options before our family, our closest friends, our spiritual advisors. The answer remains the same.

It is beyond human ability to make these kinds of choices. Yet, if there ever is a chance at comfort it is because of this. We do not hold her life in our hands. Whatever choice we make will be the right one because it will be made out of love for Ava. The decision will not be made lightly. There have already been sleepless nights, pillows wet from tears, and hours of dialogue.

I brought a G rated version of these options to Ava to allow her some power in the decision making process. She answered with, "Oh Mama, I can't choose. I don't want to go to the hospital anymore but I don't want to have cancer either. So I will do whatever you say."

Oh Lord, to have that kind of faith...Hear her prayer.

As Ava jumped into bed tonight, she announced, "I'm taking a leap of faith!"

Yes, child. Let's jump together.

If you would like, please join us in prayer for wisdom and peace as we enter this next round of chemo.