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.

Monday, July 25, 2016

Family Time

It's been a glorious past few days! We spent much needed time as a family and with Uncle David and Auntie Hannah in town, it felt complete!

It's amazing to see Ava's thirst for life. She's only 7 and yet she has learned to appreciate each day, savoring the moments with us.

Last Friday, Ava was able to get a bone marrow biopsy due to the sudden increase in platelets, ANC, and hematocrit. Her platelets went from 17 to 75, her ANC from 265 to 1006, and her red blood from 28 to 35 in just TWO days! The nurses were amazed at her recovery. We stand in awe of God's ability to heal Ava and her resilience to continue the fight.


We know that this all stems from the prayers she is receiving from all over the world. Thank you, from the bottom of my mother's heart, for your love for Ava and for storming heaven's gate on her behalf.

Tomorrow we will consult with Ava's oncologist to see what our next move will be. The most exciting news is that we are officially approved for Venetoclax AND the insurance is covering it completely!!! What an awesome answer to prayer. The financial advisor at the hospital was shocked that the insurance company was covering this drug-so are all the doctors who thought, for sure, the process would be longer and harder. But with all the connections we were given by you, everything was expedited and....well, here we are!

Thank you for standing with us and for us. We draw some mighty strength from the knowledge that we are not in this alone. The battle is fierce, but we stand in our stronghold, fortified by the Lord and all those who love Ava.

There is beauty everywhere today. And, tomorrow, with all its worries, can take a backseat. For now, we are resting under the shadow of His wings.

We know who these blessings come from. And I'm pretty sure there is more to come.

Request for Prayer:
1) Gwen is now sick with the same thing I had. I am still recovering from whatever it was that hit me. We pray for quick recovery and that it would not pass to Ava. Any sickness could delay the start of chemo.

2) Prayers for clean CT scan and No Evidence of Disease in her marrow. We will find out the results in the next few days.

3) For Ava to be able to get the Notch 1 inhibitor if needed. This drug has shown even better response than Venetoclax in an ex vivo setting. We shied away from this option at first due to how difficult it would be to get it. But, with the help of our friends, we are actively pursing this as an option.

4) For complete healing and long life for Ava.

5) For our faith to stand firm, even in the face of death. For a renewed relationship with Christ and a trust that grows with each day despite the heartaches.

Thank you for praying with us!


Celebrating Ava's discharge by going on a paddle boat ride!

On discharge day, Ava saw this cloud in the sky and said, "This cloud looks like a heart."

Reading a silly book with Uncle David and Auntie Hannah

All three Loves. Please grant us more time with them.

On the way to our whale watching adventure. 

Looking for marine life! We saw 2 humpback whales, some dolphins, and a pod of orcas!


Family fun at Carkeek Park

Teaching Jude how to walk. He should take it easy though. I mean, he's only SEVENTEEN months and still not walking. No big deal. #thirdchild


Ava had a bone marrow biopsy on Friday as her blood counts increased dramatically since Wednesday. Ava was having some back pain from the procedure (not sure if she still is), but thanks for your prayers for full and quick resolution of that. We await the biopsy results.

In the meantime, the Lees are looking into their options for a haplo-identical transplant (possibly in Milwaukee), and Ava is scheduled to start Venetoclax on Tuesday. In fact, the drug was approved and fully covered by insurance! Thank you for your prayers, we praise God for His provision! It looks like there should be no side effects judging from what is currently known about the drug, though it's still in its experimental stage.

Thanks so much for your faithful prayers and loving support.




Wednesday, July 20, 2016



I recently came down with a bad infection that kept me out of Ava's hospital room (due to her low immune system), off the computer, and in bed for a few days.

It was really hard and Ava cried many tears over our separation. We face timed as much as possible but every conversation had her wiping her tears away. The redeeming part of this sudden illness is that I got to spend the last 4 days with Gwen and Jude. Holy cow! They are so cute.

Since I last updated, something very special happened. A few nights ago, Ava and I were drifting off to sleep when she initiated THE conversation. She asked me what would happen if the chemo didn't work. I wanted to hear her thoughts first so I asked her what she thought would happen. She said she would go to heaven to be with Jesus.

Her candor and her sweet faith broke me and fixed me in the same instant. How pure and strong is her faith to anchor to promises that even well seasoned Christians might stumble through at times? How heart wrenching is it that her mouth forms around words like "dying" and "heaven" while her counterparts talk about summer break and vacations?

I asked her if she had fear. She answered that she was so excited to meet Jesus and to be in a place where she wouldn't be sick anymore. But soon, she began to wipe away her tears as she told me how hard it would be to leave us behind.

I don't want to walk this lonely road. The way is hard and broken. There are thistles and thorns and we step with tender feet. But to know that she is leading us with gentle attention to our shattered hearts, that she is not scared even though we tremble, that she knows where she will be when all is said and done, it lightens our load a fraction at a time until we realize that she bore the brunt of the burden all along. We were just spectators cheering her on in this wretched, wonderful race that is called life.

I have told her this before and I will say it and envision it for many, many more times to come. There will be a day, when she approaches the threshold of heaven and God will be there. He will scoop her up in his arms and he will whisper, or perhaps he will shout, "Well done, my good and faithful servant. Enter into joy!" For there is no one I know that has lived out the difficult lot given her with such grace, joy, and honor as my love, Ava Bright.

Thank you to everyone who has prayed for this particular conversation. It was so natural and so filled with beauty that I know it was not coincidental but a culmination of so many loving prayers.

We are currently waiting on Ava's counts to recover. In the next week we will redo a bone marrow biopsy and a pet scan to restage her disease and get a more accurate read on how well Mylotarg worked. At this time, the doctors are still uncertain which chemo they will pursue next.

With that in mind, there is actually another chemo that would possibly work even better than Venetoclax. This drug, called a Notch 1 receptor inhibitor, would be ideal because it would target the Tcell component of her disease which seems to be the most aggressive part of her leukemia. Ava has a Notch 1 mutation that would make the drug a truly viable option. The problem we ran into early on was how impossible it would be to get the drug. Venetoclax was already FDA approved and therefore its biggest stumbling block was getting a hospital and a doctor willing to administer it. With the help of so many of you, we were given great advice on how to pursue Venetoclax and we have possibly secured it for her.

The issue with the Notch 1 inhibitor is that the drug is in trials right now and therefore the drug companies keep a very tight rein on compassionate use opportunities. One example of why they don't readily allow individual uses would be that if they gave Ava the drug and she were to pass away from some unforeseen side effect, the FDA could pull the drug and the company could lose billions of dollars. That type of risk is not taken lightly.

So far, all three companies that have this drug (Eli Lilly, Pfizer, and Merck) have denied us access. Since time is not on our side, we are desperately seeking a way to expedite an appeal. Does anyone know of a way?

Last night I couldn't sleep from the pain of my sore throat and Ava's situation. I emailed her oncologist begging him to help us get the drug. In the morning, I was a little embarrassed at my emotion and sheepishly waited for his reply. His response was filled to the brim with kindness.

There are times when I wonder if the Lord will answer my cries with tender care. There have been more moments of silence these past few years than I have ever experienced in all of my time walking with Him. But I know, without a doubt, if Ava's oncologist can be so good to us than God's kindness will be immeasurably more.

I am expectant, face lifted up toward heaven, awaiting his response.

It will be good. I am sure of it.



Wednesday, July 13, 2016

Treatment Considerations

Thanks for your continued prayers for Ava and the Lee family.

As you know, the cancer journey involves a lot of nerve-wrecking waiting. We have been waiting to see how well Mylotarg worked. We are waiting for Ava's counts to recover, for her ANC to show signs of an immune function returning. We are also waiting for the results of her bone marrow biopsy, skin biopsy, PET scan and lumbar puncture. With no immune function, it is highly possible for the test results to show a false negative (e.g. showing no disease when disease is really present). However, any positive results for disease would be reliable and true. These test results will help guide Ava's treatment course.


The plan and hope has been for Ava to reach remission in preparation for a second transplant. However, assuming Ava reaches remission, there are also concerns with pursuing a second bone marrow transplant (BMT). Even if the transplant is successful, it is certain to leave Ava with many serious, long-term health issues -- far more than the effects from a single transplant. Should Ava reach remission after this past round of chemo, the likely assumption/understanding would be that the chemo worked and brought her to this place. However, there would also be a thought/hope/wondering if Ava's body is finally kicking in to effectively fight the leukemia apart from the chemo (and maybe she wouldn't need any more chemo or transplant). There wouldn't really be a way to determine this, so depending on the test results, chemo or transplant seems to be the main two options. It's just that chemo is a double-edged sword as you know; while it has some fighting power against cancer, it also has toxicity on the "good guys" as well, so it's a mixed bag. A parent's heart is to use as little chemo as possible, and only what is required, but no one really has that kind of knowledge or certainty...

If Ava becomes ready for a second transplant, another question is: what kind of transplant should be done? Another cord blood transplant? Or perhaps a haploidentical (half-matched) BMT where Esther is the live donor? In the beginning of this journey, there was a lot of talk and search to find a perfectly matched donor for transplant. In the absence of such a donor, the option for cord blood transplant seemed the best route because the immature cells in cord blood could allow for a less than perfect match. But now that Ava has already had a cord blood transplant and also experienced GVHD with it, there is some discussion on whether a haploidentical BMT might be preferred this time around. With all BMTs, there's a delicate balance of wanting just enough foreign cell response to kill/attack the cancerous host cells, but not too much that it causes life-threatening GVHD. On the other hand, too little of the foreign cell response could result in the host cells attacking, resulting in a failed transplant.

If Ava reaches remission, there is a small window of time to make these decisions - no more than two weeks. As you can imagine, there are many steps involved with either kind of transplant, cord blood or haploidentical BMT, so a lot may need to happen in a short amount of time. But as we have seen with the progress on getting access to Venetoclax, nothing is too difficult for God.

Your prayers are coveted! Please pray:

  • for Ava's continued pain: for total resolution of pain, no need of pain meds...or effective pain management that wouldn't cause her to sleep so much.
  • for absence/resolution of any infection, whether on her skin or anywhere else
  • for remission/true absence of disease
  • for wisdom regarding whether to proceed with transplant and if so, which kind
  • for wisdom regarding treatment plan if Ava is not in remission (e.g. doing Mylotarg again, if and when to use Venetoclax and how to dose it, etc.)
  • for rest for the Lee family, rest for their weary souls and hearts; for the Lord's breath of life to sustain them, His embrace to uphold them, and His presence and peace to comfort them.
Ultimately, we continue to pray for unhindered trust and rest in our Heavenly Father who knows all and sees all. As He grants us insight into His plans, may we have the ability to recognize His hand and respond accordingly. We serve a mighty God, who is a faithful Shepherd and Guide. Thank you for walking with the Lee family.