Transferring out of ICU

Thanks for your prayers for Ava and family. Ava was extubated overnight and is going to be transferred out of ICU to the Cancer Care floor. As you can imagine, it was rather traumatic for her to wake up and find tubes in her with not much recollection as to what happened. The good news is that the MRI came back normal, which also means it's not very clear as to why she had the seizure. This isn't her first seizure, so perhaps she has some tendency toward them with the right stressors/triggers.

However, now that Ava's ANC is at zero (meaning she has no immune system), she may need to remain in the hospital longer; waiting to see what the next steps are, thanks for standing with the Lee family!

ICU - update

Thanks for keeping up with the Team Brighter Days Facebook page. You may already know that Ava was discharged yesterday and perhaps saw the video of doing her celebration dance.

Unfortunately, Ava is back in the hospital. She had an unexplained seizure lasting quite some time and was transported via ambulance to the ER where she was intubated and is now in the ICU. She will have a CT scan to assess what might be the cause of her seizure; her platelets are really low, so they probably want to make sure she doesn't have any bleeding in her brain in addition to assessing other things.

Your continued prayers are immensely appreciated. Please pray for Gwen as well, as she witnessed the paramedics coming for Ava. Thank You, Lord, for providing today's manna. We receive it by faith and cling to Your mercy.


Update: CT scan came back normal, no intracranial hemorrhage. It's possible that the seizure could be a side effect of one of her medications (methotrexate). If so, Ava can be pretreated with medication to avoid this in the future. They will get an MRI to see if Ava's seizure was medication-related or not. Thanks for your prayers.

Ava has been allowed to leave the hospital for 4 hours at a time these past few days.

Wow. It was like watching a caged bird fly free.

It's been 12 days in the hospital under isolation. She came to Seattle sicker than she's ever been. And now she is up eating potato chips and watching Dragon's Edge.

It has been hard watching her teeter on the edge for so many years now. It's like dying a thousand deaths, over and over again. But it doesn't take away from the joy when she is given more life, more time, more breaths. This time of uncertainty somehow expedites the ushering in of thankfulness.

I am so thankful.

Thank you for the house that has become a home.
Thank you for the food--the glorious food that has sustained us.
Thank you for the gift cards to all our favorite and most practical stores.
Thank you for the heartfelt cards and emails.
Thank you for the acts of service in so many behind-the-scenes ways that I don't even know them all.
Thank you for the prayers that storm heaven's door at all hours of the day and night.
Thank you for your love. It has covered us so.

As we walked the long, white hallways back to Ava's hospital room after our pass ended, we talked about gratitude. Sometimes I wonder if it is okay to teach her things even with the future so shaded with gray. Does it really matter that she learns life lessons? I struggle with what to do with our time together. Do we live like she will die or do we live like she will live?

I'm beginning to see that the timeline isn't as important as the journey. And our destination is Christ. So, what we do with what we have really matters. In our case, we don't know how many minutes, or days, or months, or years. But I know that when we train ourselves to thank God for every little thing, even when our hearts have the most venomous words ready to spew at Him, there is something that the heart does. It melts. It matters that I teach her that thankfulness is necessary for survival.

The nurse walks in with the lab reports and tells me that there are blasts in the blood again. My blood freezes, and I think everything is going to hell. I want to jump out the window and die so that I can have some face-to-face complaining time before God. (Kidding...but only slightly). But then I get a text from a friend who tells me she is praying, and I open an email with a Starbucks gift card and the message, "We don't know you, but we love you." Then my mom sends a warm plate of food to the hospital, made with love, from the many nameless people serving us right now...

My heart is so mad. My heart is so thankful. It is okay to be both and I will teach Ava this because she will need to know it for the days ahead.

I have been trying to keep up with it all but really can't even begin to thank everyone for the love and service you have shown our family. Thank you to everyone for doing the hard work so that we can see how thankful we ought to be.

*The doctor said that the blasts are not too worrisome right now. Her marrow was so full of disease that maybe it spit a few cells out in the blood. We will check labs again tonight. Please pray with us for zero blasts in her blood, her marrow, her skin, her CNS, and the other sites in her body. We know it's a long shot, but we also know who stands in our corner.

Update

(From Facebook):

We just finished talking with the oncologist and plan to go with the medium intensity chemo. Ava's disease is so advanced at this point that it is creating problems for some of her organs. With that in mind, and the fact that Ava is still sick and might have a fungal infection, this is the safest route to take.

Her oncologist clarified the issue with CNS relapse. The reason it changes our plan going forward is because T-cell ALL relapse in the CNS is extremely hard to treat. Since Ava's disease is more unique with both T-Cell and AML markers, it is hard to say how the disease will react. If you remember, her leukemia has always seemed more driven by the T-cell component but the AML markers of her disease make Mylotarg a very good chemo to treat her with. Of course, the higher intensity chemo would have been a better choice but Ava is too frail to receive that right now. If this round of chemo shows promise by getting rid of the majority of her disease, we may be able to do a second round with higher intensity chemo.

However, it still stands that CNS relapse after transplant raises your risk of relapse considerably. So does extrameduallary disease, and so does leukemia cutis.

Essentially, Ava has three terrible prognostic factors standing in the way of her chance at a second transplant and disease-free survival.

We know things are looking bleaker than ever before. But we just can't give up. Ava is not ready to stop fighting. If you could see the way she still greets people with a smile despite her body shutting down...

We are asking the Body of Christ to seek the Lord with us concerning Ava. Her life is carried so preciously in His hands. And who knows, He may heal her for His glory. But if not, the glory still belongs to Him.

Please pray:
1) That this is not a CNS relapse. The pathology report has not confirmed it yet. Although it looks very much like a relapse, it could be a process of infection. It is unlikely that is the case, but stranger things have happened.

2) Ava would tolerate the chemo well and not get any sicker as her immune system crashes. We pray that she doesn't have a fungal infection and that her current parainfluenza virus would quickly be resolved.

3) We would find a good pain management for Ava so that she wouldn't be in pain but also have more wakeful moments. The medication she is currently on makes her extremely drowsy so she spends a lot of time sleeping.

4) That the chemo would clear out her disease completely and that she would have a chance at a second transplant.

I have been allowing myself to believe that Ava will make it through this and that her story would bring so much glory to God. We know that you are praying this alongside us, and we are so thankful for those precious prayers.

CNS Relapse

(From Team Brigher Days):

With devastated hearts we share that Ava is showing CNS relapse as well as widespread disease in other extra medullary sites. Due to the CNS (brain and spinal chord fluid) relapse we are being told that even with the most intense chemo, the chances of her recovering are now very slim.

She has been sleeping many hours throughout the day and her intense pain is being managed with morphine and other pain medication. Without intervention, she likely only has weeks at most.

We are spending a lot of time bedside with Ava and, unfortunately, Gwen and Jude do not understand so they are confused and sad about being separated from us.

Mike and I talk to her oncologist tomorrow. Please pray for us as we navigate these impossible decisions. We thank you for your prayers as you plead with us for another chance for our precious girl. We need a miracle.

Very Sick

The Lee family has made it to Seattle. Thank you for your prayers! Mike, Esther, Ava & Jude arrived via medical charter on Sunday as you probably know from the Team Brighter Days Facebook page (remember, it's a public page accessible to everyone). Esther's parents arrived with Gwen Monday evening.

Ava is very sick. You know this, as her peripheral blasts went up to 18% on Sunday from 5% only the day before. Ava also has parainfluenza virus right now, which can result in a severe infection in immunocompromised patients. They're not sure if they saw a touch of pneumonia in Ava's lungs. Jude & Gwen are also sick, probably with the same virus, though their bodies fight it much more effectively than Ava's does.

Ava had a CT scan done earlier today (Monday). The CT showed more nodules, but the big question is: are they leukemic nodules, or are they from a fungal infection? Ava has already been on an antifungal for a while (just in case). But even so, a fungal infection would be serious and difficult to treat, especially with her weak immune system. Any chemo would further suppress her immune system which could exacerbate a fungal infection. In order to know for sure, they would need to biopsy one of the nodules, which would be an unpleasant, invasive procedure through her side. This would also require that one of the nodules is large enough to biopsy, which is unclear at this point.

So what are the treatment options for Ava's cancer? You've heard about Mylotarg as a key player and consideration in her treatment. Mylotarg itself is not chemo, but is given in conjunction with other chemotherapy agents. Mylotarg works best when disease levels are low. Chemo agents are used to bring the disease level down to a point where Mylotarg can do its "clean up" work. It is less effective when disease levels are high.

The real variables here are in the chemo agents used, and they are weighing the options:

1) most aggressive/intense regimen (Mylotarg + fludarabine + Ara-C): this is the treatment you've heard about, where it's so intense it would wipe out everything and put Ava in a severe state of immunosuppression. Ava would need to remain hospitalized for the duration of treatment/immunosuppression, which could be anywhere from 4-8 weeks.

2) "medium" intensity regimen (Mylotarg + cytarabine): this regimen results in immunosuppression for several weeks.

3) "light" regimen  (Mylotarg alone or with a hypomethylating agent).

You can imagine the factors that weigh into their considerations. The first option, while being most aggressive against Ava's cancer, also puts her at risk for other infections, especially with immunosuppression lasting so long. On the other hand, for Mylotarg to work most effectively, they need to get her disease level as low as possible. They would only consider the "light" regimen chemo if Ava had other factors/conditions that made the other options unavailable.

Ava's been on a lot of pain meds lately and also complains of a stomach ache, which could be something called typhlitis. Ava's pains may be due to chloromas; she also has a small pocket of fluid near her heart.

As it stands, Ava will get a lumbar puncture (LP) on Tuesday along with some injectable chemo. The plan is to start treatment (Mylotarg + chemo) on Wednesday no matter what, though they're not sure yet which regimen to use. There isn't much time to waste as Ava's cancer continues to spread, but there are important factors to consider in deciding on the best regimen.

Please pray for:
- a smooth LP on Tuesday
- God's wisdom and grace for the medical team regarding treatment plan
- absence of fungal infection
- effective pain relief for Ava
- rest, stamina and strength for the Lee family
- God's peace and presence to guide
- God's glory to be revealed unhindered throughout this journey
- comfort and peace for the whole Lee family, but especially for Ava, Gwen and Jude who are dealing with sickness and being apart from family in one form or another. Sick kids always want mama! Thank you to all who continue to love on Gwen and Jude.

Be sure to follow the Facebook page for any day-to-day updates in addition to this blog. We know that so many of you already (and continue) to pray for Ava daily, and there are a couple of prayer chains going. If you are interested in joining a prayer chain, you can sign up on this one for a 1-hour slot (note that the time zone is noted in PST).

As a reminder, the link to the Facebook page is also under "Ways to Help," where you can also find links for the prayer chain there and how to provide meals or other support for the Lee family. The Meal Schedule page has also been updated.

Your partnership has been invaluable. Thank you so much for walking with us. The Lord bless you for your sacrificial love.

Meals in Seattle

The Lees are preparing to fly out to Seattle today via air ambulance. Ava starting Mylotarg means that she'll need to remain hospitalized for a month (or more).

Meals are being coordinated for the Lees while they are in Seattle. If you are interested in providing a meal or gift card, please contact Amanda at:

In addition, notes of encouragement, gift cards to Starbucks or iTunes and small packages for the girls are welcome. More importantly, your continued prayers for them are coveted and deeply appreciated.

This information will also be posted under "Ways to Help." Thank you for your faithful love and support!

It Is Well

It is so strange to walk these halls, dragging our suitcases behind us toward our room. Almost 2.5 years ago, we arrived here in such a different way. Sirens blazing, the ambulance raced toward Lurie's with a very sick Ava on board. Her blood was chock full of leukemia cells. We couldn't biopsy her marrow at the time because of the tumor that rested up against her mediastinum. It didn't matter though, we knew that the cancer was there. It declared itself by vomiting its cells right into her blood stream. She was days from dying, the doctors said. 

We settled into our room, 1719, and looked out the window at the city. The cityscape became a constant companion through those first 3 weeks in-patient. It was our entertainment during the day as we looked out at the little people, going to and from their destinations. Where were people scurrying to? What was the purpose of their steps? To see the world walking and breathing while our lives stood still...It grieved us. It helped us. It was a reminder that the world would still turn even when ours had screeched to a halt. It was a symbol that one day, we might be able to take that first courageous step back into life even with our shattered hearts. More than anything, I remember longing to be on the other side of that window away from this place.

That first night, I excused myself to a lounge far away and I howled. I started off on a chair and soon found myself on my knees, head to the ground, hands at my sides letting the weight of her diagnosis rest on that floor. I do not know how I got there. I do not remember how long I stayed. But then a voice pierced that room's sorrow and a woman gently guided me up, repeating in Spanish "Dios es bueno." God is good. 

Her son's name was Angel and he had cancer. He couldn't have been more than 10 years old. Yet, she wanted to encourage me and help me up. 

Angel ended up passing away a year later. But, I believe she wouldn't recant her statement. You see, she also had a paraplegic son. She would push her teenage boy into the hospital, up the elevator, down the halls to Angel's room so that she could care for them both. So I believed her when she spoke. These were not sentiments she tossed about lightly. They were felt and experienced through the darkness and sorrow of her story. And even while carrying those unspeakable burdens, she had time to see a mom grieving in the lounge. She stopped her world for a moment and stepped into mine. She took hold of my elbow and lifted me up. "Dios es beuno," she encouraged me. "Levantate. Dios es beuno." 

God is good. Stand up. God is good.

Since that day, so many of you have stopped to give us your hand. The moment we learned of Ava's cancer, we stepped into quick sand. It would be a long, hard process to break free. The fight to gain ground would be slow and taxing. For every step up, we would sink inches down and soon we noticed that our chances of escaping were dwindling. Yet, every vine tossed our way, every branch thrust toward our hungry hands gave us hope. And even if we succumb to this pit of death, the last vision we will have is of everyone surrounding us, reaching out toward us. We will not go alone. And this is how we know that God is good. 

The other night, Ava woke up to use the bathroom. She was running a high fever. Before even taking her temperature my mama senses picked up the heat radiating from her body. I cuddled her, coaxing her back to sleep but she was distracted. She wanted to tell me something. 

"(I'm so thankful) for my cancer going away, for daddy going to Seattle to make sure it was a good hospital, for you finding plane tickets and talking to the doctor and to daddy, and for all the people in Seattle like Auntie Kelly and Auntie Lam and Auntie Stephanie and Uncle Mike and Liz and Micah and them letting us stay in their guesthouse, and you guys trying to find a way to make me feel better...and yeah." 

It's like she was jolted awake by gratitude and could not rest until she expressed her thanks to anyone who would listen though it was the dead of night. I say it often; Ava has taught us much. But this lesson is so vital, so important for our survival. Once thanksgiving ceases, the pain will compound and break us. When we lift up our hands and our faces we are forced to look upward and away from the desolation of the ground we stand on, toward the silver lining that only God could have painted in the skies.

So I begin my thanksgiving here and I type these words to remind myself that we have been given much.

Ava needs an air ambulance to get to Seattle. Her condition has worsened so much that she has spent the last week laying in bed sleeping away her pain. Through a friend of a friend, we were introduced to someone at AeroCare who worked so hard to ensure that Ava would have safe passage to Seattle. Because her situation is so critical, she would have been unable to fly without medical support. With our without the approval of insurance, we will get there via a medical plane equipped to provide Ava with all the support she needs. This was the assurance given to us by our friends at AeroCare. It means that the pilots and the nurses would be donating their time to Ava as a gift. It would mean that the vendors and the CEO would be granting a life saving transport out of pure kindness and compassion toward us. It is unbelievable still. 

Even though Ava is set to receive Mylotarg in Seattle, there is still a team of doctors pouring over the genetics of her leukemia looking for weaknesses in the disease. Her marrow is sitting in test tubes, swirling around with chemotherapy drugs to see which ones will work best against her disease. This newest technology, barely open to the public, was gifted to us on a compassionate use basis. That means all the doctors working on her case, the technicians monitoring her marrow, the labs being used to test chemo drugs against her disease are all working for free. All this because someone knew someone who wanted to help Ava. We are speechless.

The messages are pouring in with almost identical introductions, "I don't know you, but..." 
"I am praying for you." 
"I would like to help your family." 
"I would like to buy tickets for your trip to Seattle."
"I would like to send you a meal."
"I would like to send you a care package."
"I would like to cover the cost of boosting your page so that you can raise awareness."
"I would like to make a special set of googles so Ava won't be scared during radiation."
"I would like to suggest a supplement, herb, medication, treatment, to help Ava feel better."
"I would like to offer my services, in any way, to your family."
"I would like to help you find a medical flight to Chicago."

These are the words we read on a daily basis. 

In many ways this has been one of the harder days of our whole journey. We left the house for the possible last time we will ever be together again there. Ava was in so much pain, that we hurried out without a backward glance. As soon as we settled into room 1717, two rooms down from the room we stayed in at the beginning of her disease, there was more howling. Except, this time, it came from Ava's increasing discomfort at the tumors pushing against her scapula and her arm. Only morphine quieted her down. I tuned in to Allistaire's celebration of life, via livestream. I listened while her parents, her sister, her grandparents spoke of a beautiful girl whose life touched so many people. Yet, she is no longer with us. This will be my friend Jai's reality until heaven is no longer a dream away. And just now, the nurse walked in to tell us that Ava's disease increased to 5% in her blood. 

It is true, we are nearing the end of the road. But there is a path. It is narrow, dimly lit, and barely trodden. Yet, there are people who will guide us through the thick forest down this trail and many more like it until we have truly searched the world over for our girl, Ava. And at that point if there is still no way, we will give thanks for the distance we have come.

For a brief moment we were on the other side of that window, tentatively putting one foot in front of the other, fiercely hoping that Ava would never have to fight this battle again.

Somehow, we are back on this side. But, somehow, it is well with my soul. Because God is good. We will stand up. God is good.

Ava didn't know I was recording her, hence the blackout. These were her words in the middle of the night while running a fever. #sheteachesme

Ava sleeping her pain away.

Last night's star gazing adventure before the mosquitos forced us inside. Ava said, "Aww, this was so much fun."

"Mom you remind me of me." - Gwen

Truer words were never spoken..by her.

Jude taking some of his first steps. His punishment for not walking until 16 months is to wear spandex pants that are stitched together at the thighs. #therapypants #helearnedhislesson #flylittlebird

What happens when you have an aunt and uncle who are both nurses...#squeakyclean #getthosegermsout

There is a plaque right next to this window labeling it the "window of hope." It truly is just that.

A different kind of mission

Love, confidence, financial support, last minute hugs.  We’ve had these and much more from our church when sent on a “mission.” It helped clear away many threats clouding our vision. These missions have often come down to anywhere between 1 to 3 week trips to wondrous lands such as Mexico, Arizona, China, Thailand, Nigeria, Rwanda, and Haiti. No matter the risks, the unknowns or even the results, we’ve always been surrounded by the goodwill of great people.

The reason it’s all so fresh in my mind is because, over the past two years, we’ve been sent on a different kind of mission yet with all the same support. So many times we have left and come back, left and come back. Now we’re being sent off again. It’s not to carry out the church’s mission with teams prepared to share culture, resources, and the joy of eternal life through Jesus. This mission is to go with a team of five, who are my wife and children. We go in hopes that our oldest daughter can keep living. We have more than we could possibly need as we soon head out.

It’s unnatural to talk about my church because it feels like I’m talking about me.  What I mean is that my church is all about who I aspire to be, and this subject hits close to home because I am a tangible part of the very thing I want to be like. One might think that, because I’m a pastor, I’m just a temporary figure or representative of the church. I guess that’s true if you’re just looking at printed documents or a name plate on an office door. But there’s something deeper uniting me to this church and every church family I’ve had the privilege of being a part of in Minneapolis, Saskatchewan, Denver, Naperville, Rolling Meadows, and now Deerfield. True, I will not always have the position that I’ve been so blessed by over the years, but I could never be who I am without that deeper connection that goes beyond a title or responsibility. The church is one family because of Jesus, as it says, and I know this truth experientially: “And whether one member suffer, all the members suffer with it; or one member be honoured, all the members rejoice with it. Now ye are the body of Christ, and members in particular” (1 Corinthians 12:26-27, KJV).

I serve an amazing group of people, where actually the more storied description is to say that I’m served by an amazing group of people. Half of the group operates in a completely different language than mine. Despite me not knowing well enough the language they speak, people have gone far out of their way to make sure that nothing is lost in translation: “Take care of your family, keep up your strength and determination by eating and resting well, we love you and God is with you.” The other half of the church does speak my language, and these are some of the most skilled and influential people that I know.  Yet they’ve been able to muster only a few words over the years because of just how painful it is for them to see us go through these trials.

I try imagining what our people are going through, and my shoulders fall at the thought of so many sisters and brothers who have chosen to walk with us up close over the years. How does it affect their faith when the person that is supposed to bring God’s conviction, comfort, and guidance is the one that needs the most empowerment, the one who needs to be carried, the one who needs direction? They’re led into a series of questions and doubts about God’s sovereignty, His providence, and His intentions. They come across frustratingly short lived insights during this up and down battle. “Ah, now we get it. Wait, no we don’t.”  Not much can be answered even after several months, perhaps even years after following this journey. The same questions linger on for them, and it boils down to the core of what they are to believe. They’re also faced with wondering, “What have we believed so strongly that maybe we should now more loosely hold onto?

I feel like I have very little to stand on at this time in terms of heralding newfound convictions and realizations. What may be said today could change tomorrow, just like this diagnosis has evolved. The prognosis has many times shifted.  Even set doses of medicine prescribed for Ava gets altered. So much is uncertain that a bigger question has emerged, bigger than “what must we do” and “what will happen?”

It’s that of all that’s been shaken up in your life, what still remains? What is STILL true? That’s what I imagine to be the most important thing our church is here to witness, after all is said and done.

Are we still believing? Are we still hoping? Are we still loving?

If yes, then how?

I’ve got no words, but the answer is yes.  The how is every single one of you. Thank you, Church, and All the Faithful who have been with us. All who have given even half a thought or prayer to God for us, that’s why we’re here. For a single penny spent on us, our gratefulness to you extends forever beyond the trappings of this life. To anyone who has made our family any part of your own goals toward lasting, meaningful commitment both to God and to each other, we promise that we will make it.

State of Flux

See below for a post from the Team Brighter Days FB page about an hour ago. However, things are in a state of change & re-evaluation. The Lees originally booked tickets to fly out to Seattle today, then cancelled them so Ava can remain here for 5 more days of skin radiation. Thanks for your continued prayers for God's wisdom, healing grace, peace and presence.

After further discussion among Ava's doctors (Chicago Oncologist, Seattle Oncologist, Radiation Oncologist, and Transplant Doctor), they feel the best plan for Ava is to receive another week of radiation in hopes of giving Ava a durable remission in her skin. The thinking is, even if Mylotarg works, Ava will not be able to travel back to Chicago for the rest of her skin radiation. And since leukemia cutis is difficult to resolve, if we do not finish out treatments, she will most likely relapse even after a second transplant.

SO...the plan is to stay in Chicago for one more week to fit in as much radiation as possible. Next weekend, we will head to Seattle for intense chemo - Mylotarg, Fludarabine, Ara-C.

Of course things can change again depending on how the disease progresses. We truly pray that Ava can stay healthy enough to receive what she needs.

Speaking of...we need extra prayers today. Ava spiked a fever last night so we are currently in the ER to make sure she doesn't have any infections. We hope to be out of here soon.

In one way, we are thankful for this blip in plans because it means one more week of perceived normalcy for Ava and a chance for us to say our thank you's and goodbyes. Thank you for your continued prayers and love.

Significant Relapse

We found out today that Ava has relapsed significantly in her marrow since the last biopsy. Her blasts are now at 5%, up from .017%. We will suspend skin radiation and leave for Seattle as early as this weekend.

We ask for prayers that our faith would be strengthened even while we stand on shaky ground.
‪#‎Godisourfirmfoundation‬ ‪#‎preciousava‬

Roasting hot dogs and enjoying the summer nights.

Transitioning the shed back to a playhouse for the girls.

Reading together in the playhouse.

Team Brighter Days

Please join us over on our Facebook Page, Team Brighter Days, to see regular updates and pictures during the radiation portion of Ava's treatment! We thank you so much for your prayers and love, always.

With Ava's radiation oncologist, Dr. John. He is one of the kindest doctors we have ever had the privilege of meeting during Ava's journey.