Monday, March 31, 2014

Celebrating the Victories- Big and Small!

Hello there, faithful friends!

Today we found out that Ava's ANC has gone up and is now at 66! This is great news because it means that her body is starting to heal. The other great news is that her blasts are STILL at ZERO percent in her blood. While it's been like this for the past week, I have been having a hard time celebrating that number. It's like I can't accept this small victory because it's not the complete answer to my prayer. And I guess I just wasn't that thankful. 

I'm a "what if-er." What if she still has Leukemia cells in her marrow? What if her blasts come back? What if we get high on winning these small battles only to be slammed by bad news later on? I'm constantly waiting for the bottom to drop.

Meanwhile, my mom has been doing the most annoying thing lately. It's been grating on my nerves now for weeks on end. I should preface this by saying that I love my mom. She's been one of my greatest sources of strength during this whole time and throughout my life. So anyone reading this and translating it into Korean, please remember to include this part too. :) Because even though I'm 34, my Mama's silent treatments are still pretty effective. 

Since the first notice of Ava's diagnosis, my mom has been telling me to think positively. But she doesn't just say it; she kind of sings it to me using this weird Julia Child voice. "Po-see-teeb Thinking!"
I'm not the most patient person to begin with but this just really puts me over. the. edge. The first time she did it she must have known that it would irk me because she said it and then quickly ducked out of the hospital room as if she knew that I would chuck the icepack I was holding at her head. I was so mad. How could she tell me to think positively when I was just told that my daughter may not make it to her next birthday? I wanted to take her words, throw them on the ground, and pound all my anger out on them. My temper was at its worst...If there's anything you should know about me, it's this. I pretty much suck, all around. It's amazing that God would find anything salvageable in me at all. Praise God that he is gracious and full of mercy and able to find use for broken people.

I get it now. I understand the power of a positive mindset. It's not like God is holding out on healing Ava until I change my attitude, but there is something about hoping in him that chases away the fears and all the baggage so that life has moments of joy even in the midst of uncertainty and death. I'm practicing the mindset of setting my hopes high as I look toward God. I'm also challenged to get excited about all the victories, whether big or small, because these are the ways we can acknowledge the goodness of God and honor him even when things aren't going our way.

Ava is scheduled to be seen in clinic this Thursday to get a Complete Blood Count. If all of her numbers look good, she will get her bone marrow aspirate to see if there are any blasts present in her blood. Then we will proceed with the next round of chemotherapy. Please pray with us that there would be absolutely no trace of any cancer left in her marrow or her blood! Thank you for celebrating with us from near and far and thank you for your unwavering support of our family!

"Answer me, Oh Lord, for your lovingkindness is good; According to the greatness of Your compassion, turn to me." Psalm 69:16


Thursday, March 27, 2014

Lullabies

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I have this thing about singing lullabies to my kids. Maybe it's the fact that my own mom sang them to me when I was growing up. They gave up a lot for me, my parents did. One of the things they gave up was their blossoming careers in Korea. They traded them in for backbreaking blue collar jobs in America. Due to working the 3rd shift, my mom wasn't really there during the nights. Before leaving for work, she would gather my brother and me in her bed and sing us lullabies until we fell asleep. These lullabies served as a lifeline to carry us through the darkest of nights until we met again in the morning.

I've sung countless lullabies to my children in the past six years. And I also let them sleep in our bed, just like my parents did. Yes, I would complain from time to time and NOT appreciate the fact that they frequently managed to migrate into a horizontal position so that a face or a foot would often be in my personal space. But then there were those days when Wisdom whispered in my ear and told me that these years would be the best years of my life. She was right, of course.

We picked up two new lullabies this past month. "Ladybug" was a song that Mike's mom sang to him when he was a child. Gwen fixated on this song and wanted Mike to sing it over and over again. I think it tops her list of lullabies at the moment. And the second song is one that Ava and I had fallen in love with prior to her diagnosis. I discovered it about a month ago and had been playing it in the car when I wanted the girls to fall asleep.

Since the diagnosis, nights have been hard. I'm not strict on bedtime as much anymore because sleep seems so trivial, such a waste of time. So we spend a lot of time talking, and reading, and singing lullabies.

The truth is, it's very hard to be walking this road right now. I don't want to lose my baby. I don't want to suffer. I don't want to have to "be strong." I want to kick and scream and cry. I want this nightmare to be over and my baby's hair to grow back so that she doesn't feel the need to look at the ground every time someone new passes by. I don't want to ponder the "what if's" and to imagine life without her. I want to be reassured that everything is going to be okay, that she'll live to see her hair grow back, and that there will be a happily ever after. I want more than two weeks, two months, two years...I want a lifetime with her.

But all I have right now are these words of comfort:

"May the Lord bless us, and keep us.
 May the Lord smile on us, shine his light upon us.
 May the Lord lift us, turn his face towards us.
 And give us his peace, give us his peace."

I also have the "Ladybug" lyrics but those seem a little less relevant. 

Thank you for your prayers. They are definitely much needed lifelines to us during this time.



Tuesday, March 25, 2014

Sacrifice of Praise


Thank you for your faithfulness in praying for Ava even through my moments of silence.

These past few days have been really wonderful. There truly is something healing about being in your own home. Ava has been waking up with a smile on her face and and is flourishing during this time. Even though we ask her to be more careful, she is still running through the halls and jumping off beds. i have never been happier for the chaos in our home because it means that we are enjoying the life that God has given us.

Sunday night, we decided to go down to the city and spend the night at Ronald McDonald House so that we wouldn't be late to our 9:00 clinic appointment. We also thought Ava would like to see the place that we call home when she is in-patient at the hospital.

The Ronald McDonald House is really nice--almost vacation-llke with large Tempurpedic mattresses and breathtaking views of the city skyline. But it was hard to be in that place knowing the purpose behind our visit. After Ava's stay at the RMH, I will always have a special place in my heart full of really good memories of our time there together. She appreciated all the small details and breathed life back into a place that was sad for me.

By the time we got there, it was already dark which made the lights outside our window shine even brighter. Ava quickly made her way to the window and gazed out into the glittering lights. I have to say, this girl has my heart. She enjoys the same things I do and city lights are high on our list. After a few moments of sitting quietly together, she pointed out the north star and told me she had made a wish.

Ava: Mama, I just made a wish on the biggest star right there.
Me: What was your wish?
Ava: I wished to have the biggest after-chemo party ever!
Me: We definitely will!

These are holy moments: prostrate on the floor, tears pouring out, and desperate pleas in the middle of the night. There is nothing glorious about it yet it is filled with glory because our hope comes in something beyond ourselves. Perhaps suffering could be considered a privilege, a chance to participate in deeper fellowship with God. We only have this opportunity on earth, because in heaven there is no suffering. So, this suffering now is a sacrifice of praise. It's a chance to worship God when it hurts deeply. It is worship that is costly. And it's a reminder that praise ought to be continuous even in the valley. Of course, it still hurts like a raw gaping wound, but there is something profoundly peaceful knowing that he is walking closely with us through it all.

I bumped into another RMH mama who had been living there since December. That is 4 months of living in a hotel room. But she was filled with so much grace. As we shared our stories she said that her friends often asked her how she was so strong. She answered that it was her clothes that kept her from falling apart. There are times in life when it seems like God has given us more than we can handle--when it feels like we can't take one more step without dropping dead. But his grace is sufficient enough and, in this season of suffering, he pours out his mercies so that we do not buckle under the weight of this broken world.

Gwen's got her game back now that we've been together as a family for almost a whole week. She's well-known around RMH for her boss like qualities. During our stay, she witnessed a dad getting really mad at his son's tantrums. The kid, Connor, eventually ended up dumping all of his milk on the floor and causing a huge ruckus with his screaming. Before we left for our room, Gwen sought out Connor's dad, and was like, "Hey, how come your son keeps scweamin' and scweamin'?" I was mortified and quickly got her in the elevator. "You just don't say stuff like that, Gwen," I tried explaining to her. I don't know what makes her feel like she's an expert on behavior when she was having her own meltdown a few hours earlier, but I'm glad to have her back. :)

Before bed, the girls were running around so excited to be together. Ava had on a white shirt and hospital pants. They were the drawstring kind and she had managed to tuck her shirt haphazardly into her pants and they were hiked all the way up her distended belly. Her fuzzy hair was all crazy and as I looked at her, my heart melted at the sight of it all.
She is so precious to me.

We are so finite and fragile and yet we are treasured by God beyond measure. If I love Ava like this, with so much tenderness, how much more the one who created her? Tonight I thank God for his boundless love for us, even to the point of sacrificing his only son on that wonderful cross where such deep sorrow and love met.

Before the evening ended, I heard a conversation between the girls that was so insightful I needed to share it.

Gwen: If you do that, I won't play with you anymore.
Ava: ...I can live with that.

I love those words. Learning to let go of things is a big lesson I'm learning through this time. Life is one of those things that we try to hold on to with all of our might as if our time here isn't temporary. I'm coming to the realization that tragedy is not so much a life cut short but a long life that is not lived well.

Thank you for your continued prayers for Ava and for walking so closely with us this whole time. We are blessed.

Monday, March 24, 2014

Great News! (updated)

Believe it or not, Ava's blasts were at ZERO this morning! Her ANC continues to be at zero, which the docs say is unusual. Sometimes it can take 5-6 weeks for the ANC to recover, but they say it's usually coming back up by now. Her ANC needs to be at 750 in order to start chemo. A possible explanation is that the chemo in her bone marrow is still working, so we will see.

They plan to do a bone marrow aspirate next week, since this is something they never did in the beginning due to the mass on Ava's gland near her airway. Because her labs reflect what's in the peripheral blood, Ava may still have blasts in her bone marrow that isn't reflected in the peripheral blood where they have been checking. The bone marrow aspirate will tell more.

If there are blasts in the bone marrow, the thought now is to start ALL treatment as planned. If there aren't any blasts, then this may be reason to stick with AML treatment.

ALL treatment/pros & cons:
Pros: shorter therapy (5 days vs. 10 days with AML), and patients who respond well to ALL treatment tend to have a better prognosis.


Con: there is one particular drug that seems to cause an allergic reaction to virtually every person who receives it, so they will have to think of an option to help Ava around this. Pre-medication is not an option. Also, this medication lingers in the body, so even if Ava does well at the hospital, they wouldn't want to send her home because she may still develop a reaction later.

Please pray for God's hand to guide Ava's treatment path.

In the meantime, we continue to celebrate Ava's blasts being at ZERO and the fact that she's looking/doing great and playing and everything. We also rejoice that her platelet transfusion this afternoon went well without any incident. Thank you so much for your prayers!

Platelet transfusion - went well!

Ava is about to get another platelet transfusion. Would appreciate the prayers for no reaction despite being pre-medicated! Thank you!

Update 4pm: Ava seemed to tolerate her transfusion well and with no issues. She actually napped through the whole thing and is still napping! Once her dose of IV antibiotics is finished, they should be cleared to go home. Thank you for your prayers!

Sunday, March 23, 2014

Labs in the morning

Ava had another good night/day at home, and we thank God for that! The Lees were able to have a time of worship as a family as they have done on previous Sundays wherever they are. Mike, Esther & Ava will spend tonight at the Ronald McDonald house since Ava has a 9am appointment in the morning to recheck labs, including her blasts. Thank you for your continued prayers in the waiting.

Saturday, March 22, 2014

Bone Marrow Drive FAQs

A few people have asked some good questions about joining the marrow registry, so I thought I would post answers here.


Is there a cost to join the registry?
No! It is FREE to join the registry, and the donation process is also FREE of charge should you be selected to be a donor. Your employer may even provide paid time off for the donation. More info here. However, Be the Match welcomes tax-deductible donations because it does cost $100 to process each person's swab kit, so every little bit helps.

Can I join the registry if I'm pregnant?
Yes! You can give a cheek swab sample while pregnant. However, if you are found to be a match for someone, you cannot actually donate bone marrow until you have fully recovered from delivery/C-section.

Is there a minimum weight requirement like with donating blood?
(Hopefully you already saw my own correction on this), but no, there is not a minimum weight requirement. However, there are maximum weight/BMI requirements that need to be met. More here.

What if I have a cold? Can I still join?
Yes! Recent infections from a cold/flu will not prevent you from joining the registry (provided you are well enough to come out)!

What about body piercings/tattoos?
Neither body piercings nor tattoos prevent you from joining the marrow registry.

Let me know if you have any other questions!

Four Bone Marrow Drives (Chicago) + Urbana

We have finalized the times and locations of four bone marrow drives that will take place on Sunday, April 6th!

Locations are: Wheeling, Deerfield, Rolling Meadows and Naperville. All information can be found on "Marrow Drives" at the top toolbar.

* Donors should be 18-44 yrs old in good health
* Donors must be a minimum of 110 lbs (see the page for more info on other weight requirements) Good news! The minimum weight is outdated. No minimum weight requirement!
* No travel restrictions to join the registry.
* You can still register if you have a cold.

Note: Another drive will be held at University of Illinois, Champaign-Urbana that same weekend. Details to follow.

Friday, March 21, 2014

First Night at Home

From Esther:

"Ava was fever free last night and woke up sooooo happy to be home. Mike and I were up most of the night giving her medication. One at 1am- 2am and another at 7am-8am.  It's every six hours via IV. In our tiredness, we even forgot one, not very serious, (thank God) step. Also, while up doing this, I noticed Ava was having dreams, often punching the air and whimpering. I asked her this morning if she had bad dreams, and she said she must have been although she doesn't remember them exactly. Praying for peace on my child."

Thursday, March 20, 2014

Re-entry

Mike, Esther & Ava returned home late this afternoon (hooray!) They are thankful to be home, and thankful to have the comforts of home. It's hard to believe they've pretty much lived at the hospital these past 3 weeks.

First point of news, Ava's blasts decreased to 7% today!!! This must be a work of God, as no one can explain it. However, her WBC increased a bit. Ava continues to be treated for a suspected fungal infection, and they want to do a CT scan in a few weeks to verify this (they would only do it if they felt it was necessary). However, with the CT scan comes more radiation, and with the radiation, the possibility of secondary cancers, so please pray by some miracle, Ava would improve over the next couple weeks such that the doctors no longer feel the need to have a CT scan done.

Regarding treatment, they are still planning on starting ALL treatment whenever the time is right. Out of 4 oncologists who have weighed in (including Ava's own doctor), two would go with ALL treatment, while two would recommend staying with the AML treatment. Please pray for wisdom for the medical team, and ultimately - for God to be the guide on this road.

The home health nurse also came by the house today to go over how to administer/take care of Ava's IV antibiotics.

While it is nice to be home, "re-entry" has its adjustments as well. Gwen was a little shell-shocked by Ava's new hairdo. Even though she told Ava that she's "beautiful" (as she was repeatedly trained by her mom earlier in the week), Gwen's expression revealed that she needs time to process it. Ava tried explaining that she has "short hair now" and even invited Gwen to touch it. But Gwen declined... leaving Ava feeling rather insecure and hurt, and she now insists on wearing her hat inside the house. Please pray for the girls' adjustment to one another, that their strong bond of love would overcome all insecurities and become a source of comfort and joy to one another.

Another reality of being home is seeing how many things seem to "speak" of Ava, and it's hard to imagine what it would be like if the unthinkable happened... trying to take things one day at a time, but one day can be filled with so much as it...

So, prayer recap:
  1. Please pray that Ava remains infection-free (and fever-free!) at home, especially with Mike & Esther caring for her IV line and Gwen adjusting how she plays with Ava. (Gwen is learning that she needs to be more gentle, for example).
  2. Please pray for the girls to reacquaint themselves with one another in a way that each feels free to be herself.
  3. Please pray for Gwen as she attempts to process all that's happened... that she wouldn't somehow feel second-best or forgotten, but be able to feel just as connected to her family, even if it looks different than it did just 3 weeks ago.
  4. Please pray for Ava, that her tender heart would be secure in the love of God and her family. Please pray that she wouldn't shoulder any more burdens from her illness than she's already had to endure, worrying that she is either inconveniencing people or causing them sorrow or heartache. Please pray that she will feel up to the fight, but not because she fears letting anyone else down with her health.
  5. Please continue to pray for the whole Lee family as they adjust to being home and learning how to effectively work together as a team. Please pray that they will also look out for one another's needs, including their own.
  6. Finally, an overarching prayer request is for God's wisdom to lead Ava's treatment and care. We humbly find ourselves in a place where we don't have all the answers (which is simply the reality of our everyday life, we just operate under varying illusions/delusions of control). So we look to God to shed light on our steps.
As always, thank you for your prayers and friendship.

Discharged!

Ava has been discharged (woohoo!) and they are on their way home. Hooray!!! Let's pray that they get to stay awhile!

Interviews Today

I don't know how the evening went for Ava, and I don't have any lab results from today yet. However, I know that Be the Match Walk/Run as well as their Media will be talking with the Lee family today to get some information about Ava's story in hopes of getting the word out! If you are interested in joining Team Ava Bright on Saturday, April 12th for the 1K/5K walk/run (there's also a Tot Trot for 5 yrs and under), you can do so here.

Mike & Esther are also planning to join a little private party for the oncology floor patients/families sometime today (not sure if it happened already), though I'm not sure if Ava will be able to visit as she is on another floor.

We hope that as Ava's story is spread, more and more people will be encouraged to join the marrow registry and potentially save a life! I'll post more as I hear. Thanks for your prayers.

Uplifting

Despite Ava's unexpected fever and the truly disappointing news of not being discharged today, today was another GOOD day. Ava's been in really great spirits and doing well! She's been playing and laughing, and Mike and Esther have enjoyed being able to share these times with her. She has also been fever-free for 19 hours! (If she's afebrile for 24 hours, she's technically cleared to go home). Blood culture sensitivities confirm that the antibiotic she's been on is doing its job. Not to make myself eat my words, but they'll likely be discharged tomorrow (Thursday) and go home with IV antibiotics to finish out the course.

Second opinions have also come in from other oncologists around the country, reaffirming that Ava's treatment plan is a good one. Mike and Esther are grateful for the time these doctors have taken to respond with compassion, and praise God for the peace He's given about where Ava is in her treatment regimen. The doctors' experiences also provide some hope for Ava to go into remission without BMT, since they have seen just a few cases of that over their careers. It may not seem very promising that these long-practicing oncologists have only seen just a few patients who have gone into remission without BMT, but it has at least happened! And... since Ava seems to be the "rare" case in so many scenarios, why not throw this one in the hat as well?

Meanwhile, Gwen and her grandparents spent the day at home today, so it would be wonderful for Ava to be discharged and the family to be reunited again.

Prayer requests:

  1. That Ava will have an event-free night and finally be able to go home! No more fevers!
  2. That Ava will remain infection-free at home as well, especially with the added IV antibiotics.
  3. Please pray that should Ava have a fever, let it be at the hospital (for Ava's sake). It was too hard for her to just have a taste of home and then have to return to the hospital. She felt bad about being sick and being the cause of returning to the hospital. But, since we'll be praying that she not have any fevers and be discharged home, we may not even have to worry about this one, right? *wink*
  4. Pray that Ava's blasts will continue to "unexplainably" go down! All the way to zero!
  5. Patients who respond well to ALL have much more promising results. So please pray that if/when ALL treatment begins, Ava would respond really well to it, that she would go into complete remission with no relapse... (and no need for BMT!)
  6. Please pray that we would find a perfect match for Ava should she need it. (Even with a good match, BMTs can be really really rough on kids, so it's not an easy road still).
So in spite of today's setback, today was a day filled with hope. Hope because they can feel the effects of everyone's prayers - they really can. Hope because they know that God is in control, no matter the outcome. Hope because they know God loves them and loves Ava and will provide for all their needs, whatever the future holds. Hope because they believe that God is still good.

You have played an important role in fueling this hope as well, lifting their spirits up so that even in the valley of trial, their feet have not yet touched the ground, for they sense the arms of the Heavenly Father carrying them. It's the kind of "peace that passes all understanding" or "transcends all understanding" in some translations of the Bible - the inexplicable peace in the midst of tough times that can only come from God. Man can't muster this up on his own. Certainly there is sorrow in the journey. You have seen it and felt it. But even in these difficult three weeks, they can still see the fingerprint of God. His love is real.

So who knows what tomorrow will bring? Yet we rejoice in the hope and peace we have through Christ. We rejoice in this GOOD day. We rejoice in Ava's blasts jumping down to 13% "for no reason." We rejoice in Ava just doing really well overall in spite of the leukemia. We rejoice because of you - supporting the Lee family and giving sacrificially. They may not know the lengths of your sacrifice, but they can sense it. God sees it all; may He reward you for your acts of love and giving. Not because you do it for a reward, but because you are demonstrating His love in a tangible way, whether you realize it or not. Thank you for choosing to walk this journey with them.

Wednesday, March 19, 2014

Good News-ish

So while we are on this rollercoaster ride, how about some good news? Ava's blasts "unexplainably" went down to 13% today! Wow! They are certainly puzzled by this, as they don't typically see further decrease this far out (and what a jump down!) However, they are still planning on going with ALL treatment next, unless perhaps the blasts go down to 5% or lower. If Ava's blasts go down this low, they feel it demonstrates enough reason for them to stick with the AML treatment. Until then, they plan on switching to ALL treatment next.

On another note, they are wondering if Ava's fever is due to a possible fungal infection, so she has been started on meds for that. Unfortunately, one of the lesser common side effects of the antifungal is photophobia, which means that it's REALLY painful for Ava to keep her eyes open due to hypersensitivity to light. Even with the lights off in the room, Ava was complaining that it was too bright and could barely squint. It's to the point that her eyes sting and her eyes water a lot. Thankfully this supposedly a transient thing, but it's still pretty uncomfortable and she's supposed to get the antifungal twice a day, so thank you for your prayers in that regard.

Love Always Hopes




Life before all of this was spent being super busy. I was always rushing- rushing through mornings, rushing through goodbye kisses, rushing to work, rushing to class, rushing to lunch, rushing to meetings, rushing through dinner, and baths, and bedtime stories. You see, I thought life was about getting things done, checking off lists, and getting through the day. The crazy thing is that as I was living life, it was actually passing me by.

Life after a diagnosis is slow. Time is measured by when the last dose of medication was given and when the next is due. Hospital days are filled with a whole lot of waiting. We wait for lab results, for doctors to round, for lunch to be delivered, for a sign that everything is going to be okay. We kiss her bald head a thousand times, snuggle in bed for hours, and take little bites of our lunch until it grows cold. We spend time wiping her down for baths, and we coax her sleepy eyes awake for just one more bed time story. It's crazy how time moves slowly and yet we can't seem to fit in everything we want to do with her and for her.

I must confess that I have been scared to hope. I'm afraid that the bigger my hope becomes, the greater heights I will fall from when my hopes are dashed. But what I know is this. Hope is an expression of love. And as I see my friends and family rally around us, rooting for us, praying with us, and walking alongside us, I am moved to want to hope. You show us deep love through your hopes for Ava to be cured.  And we know that love is powerful. In fact, love conquers all.

"Love never gives up, never loses faith, is always hopeful, and endures through every circumstance. Love will last forever!" 1 Corinthians 13:7-8 (NLT)

No discharge...

Ava woke up in the middle of the night with a fever, so she is no longer going home. She also cried all night of leg/bone joint pain, so her legs are sore, particularly in one leg.

It's difficult to see Mike/Esther witness Ava in pain, and even more frustrating to not be able to go home!!

Your prayers are greatly appreciated. Thank you.

Korea Daily

Korea Daily is doing its part! Won't you join our efforts? Be the match and save a life!

http://www.koreadaily.com/news/read.asp?art_id=2406915


Tuesday, March 18, 2014

Tuesday

Just a quick note: I added more information about being a bone marrow donor, including charts regarding eligibility, etc. Please see the "Donate Marrow" section for more on that.
********
It's almost been 3 weeks since Ava was first admitted to Lutheran General for a bad skin infection... how much has happened since then.

Today was another good day; Ava continued to be in a great mood, did well with schooling and overall just seemed very healthy for someone with leukemia. The doctor remarked about this again as well. Towards the end of the day, Ava started complaining of leg pain, which is thought to be due to the leukemia.

Ava's WBC went up a little today to 0.7K (from 0.4K), while the blasts remained the same at 34%. These numbers are not what we want to see, despite the fact that Ava seems "really healthy" in behavior/demeanor. The plan is to begin ALL treatment when the numbers begin to rebound, but this is not a hard rule as there are many different factors that come into play. If Ava's blasts increased tomorrow, for example, they wouldn't begin chemo because the toxicity would be too great on her body given that she just completed AML treatment last week. So, we will wait and see (and pray).

Ava has been taking her hair loss in stride! Thank you for your prayers! She has been able to laugh and even joke about it, and is glad to still have some wispy baby hairs. What a relief to see her unfazed by this change in her outward appearance. Let it continue!

Ava will likely be discharged sometime tomorrow, pending final results. However, the Lees will likely spend Wednesday night at the Ronald McDonald house, giving Ava a chance to see where they have been staying and do some other things before returning home sometime Thursday.

Meanwhile, we continue to be amazed at the scope of reach Ava's story has had. Mike & Esther continue to get messages from people in other countries who are praying for them and Ava - what a blessing this is. The Korean Daily (in Chicago) also contacted them a few days ago, and will feature Ava's story in their paper tomorrow. Be the Match Walk/Run is also interested in getting Ava's story out more publicly, and they may be able to publicize the bone marrow drives taking place on April 6th. While Mike & Esther have no desire to be "publicized" (nor rejoice in such attention), any efforts to help recruit more people to join the bone marrow registry or to enlist more prayers for Ava is welcome!

Prayer requests:

  1. As mentioned, please pray for wisdom regarding Ava's care - wisdom for Mike/Esther and wisdom for the medical team: what steps to take, when to take them, when to consider other options, etc. What would be the next step if Ava doesn't reach remission? How will they know?
  2. Continue praying for the numbers (especially the blasts) to decrease!
  3. We praise God for Ava's positive mood, and continue praying for even more of that to carry her through. Please pray for the Lee family to grab rest/renewal in these "less urgent" moments, storing up for whatever lies ahead.
  4. We are thankful to anticipate Ava's discharge tomorrow; please pray for a longer stretch at home this time and no other incidents!

Thank you again for your love and support. Words do not describe their worth. Esther will update soon.

Bone Marrow Drives - see toolbar

It is confirmed, the Deerfield bone marrow drive will now be April 6th (same day as the Rolling Meadows). All previous posts have been amended.

I removed the "Hospital Info" on the blog toolbar so that I could add "Marrow Drives" for easy access. (The "Ways to Help" was getting a bit ridiculous). So, please refer to this page for more information about attending a drive/joining the registry. I will also add more information about other locations as it comes, and include important information about donor eligibility when I get a chance. Thanks!

Monday, March 17, 2014

Current Standing

As you know, Ava completed her first round of AML chemotherapy last week. Although her blasts have decreased, they have lingered and really haven't decreased near what the doctors would like to see and consider to be a "successful response." At this point, they are considering the AML treatment a failure, though there's still a (small) possibility that the blasts could continue decreasing over the next several days. Continue to pray for Ava's healing.

The plan right now is to switch to ALL treatment when ready, though it is unclear how they will determine when is a good time to start the ALL treatment. They are still hoping/aiming to get Ava into remission with just chemotherapy and avoid any need for a bone marrow transplant (BMT). The doctor was surprised to see how great Ava looked today -- she was peppy, energetic and talkative! (She was quite chatty over the phone and sounded really happy!) This made the doctor optimistic for Ava, since many leukemia patients don't display this kind of energy/overall wellness with her numbers.


If chemotherapy alone is unsuccessful, then it'll be time to consider a BMT. Even for a BMT, the goal is get Ava into remission quickly to optimize the success of a BMT, so it's still important to get Ava into remission. Finding a match would be critical, and timing of how everything plays out will be equally important.


It was asked whether Ava's blasts could be from ALL, so therefore could it be that we just need the ALL treatment to eradicate those blasts? (This idea was similar to what was postulated before). Apparently, it's not quite that simple with Ava's type of leukemia. Patients who have "bilineage" leukemia have 2 types of blasts: ALL & AML. They would be expected to respond to both chemo regimens: AML chemo to eradicate the AML blasts, and ALL chemo to eradicate the ALL blasts. But Ava has "mixed lineage" leukemia, meaning that she has one type of blast that has both AML & ALL characteristics within. Therefore, it's not as easy to predict how she will respond to ALL treatment. If you recall, they tried ALL treatment first, and it didn't work then. We can only wait to see how she might respond this time.


So what if the ALL treatment doesn't work? Then it's all about buying time until a proper bone marrow match can be found so Ava can receive a BMT.


Prayer requests:

  1. Miraculous eradication of the blasts - (Ava's healing!) Please pray that the blasts would continue to decrease by leaps and bounds, and no BMT would be necessary; pray that Ava would be healed and go into permanent remission.
  2. Finding a perfect BMT - if it comes to needing a BMT, pray for amazing success in finding the perfect match for Ava. With this in mind, please pray for the bone marrow drives, that there will be huge turnout and many people joining the registry, and for God's grace in the timing of it all (the collection & processing of all the swab kits in relation to Ava's need for BMT). A search for a bone marrow match has already been initiated, and the medical team will also contact Taiwan, China & Korea to further seek matches.
Thank you so much for your unceasing prayers and intercession. God is good and we trust in Him. Thank you for your continued prayers for Ava and her family to persevere and be strengthened through all of this.

One Million More

I've been cherishing every moment with my girl. Tonight's conversation needed to be recorded.

Me: What is your wish?
Ava: I wish your broken heart would be put back together.
Me: Why do you think I have a broken heart? (I thought I did a pretty good job of keeping my fears from her but she is so observant.)
Ava: Because I am sick. But if I get better, you heart will be better. But if I fight and don't get better, is it okay? Will you feel bad?
Me: I would be very sad but it will be okay.

Then I held her close and quietly cried. And this was what she said next.

Ava: Mama, I'm sorry that a long time ago, I said that I wanted a new mommy. It's just that I was probably upset about something. I think you are the best mama I know.
Me: Ava, I'm sorry I ever hurt your feelings. I never meant to.
Ava: I know.

And when I looked into her face, I saw that she was crying...

Me: Are you crying Ava?
Ava: Yes, it's weird because I didn't even yawn. (and then she touched one of my falling tears and said) I am saving this precious tear.

These are my bittersweet moments with my girl. Praying with all my heart for one million more.

Please consider registering with Be The Match to see if you might be a bone marrow match for a searching patient. You could save more than a life; you could help a family build a million more memories with their loved one.

A Good Day!

Yes, you read that right - today has been a good day!

We thank God for:

  1. Ava's leg pain & neck pain - they are GONE as of this morning! Just gone. The docs were beginning to worry that Ava might have had a leg fracture or something, with the pain she was experiencing and reluctance to move. But the pain is all gone! Hallelujah!
  2. The X-ray she had this morning of the neck/chest area also revealed that the mass on a gland that was pressing on her airway is also GONE!
  3. Her WBC is down to 0.4K today, continuing its downward trend.
  4. Ava has been afebrile for over 24 hours.
  5. Ava had a stitch at her PICC line insertion that looked irritated. It is all healed up this morning and looking great!
  6. Ava also had a sore at the corner of her mouth that had ripped open from opening it wide. That is also healed and looking great!
  7. Gwen's skin is also looking much better today!
Given that Ava pretty much has no immune system, the healing of her sores is simply a work of God, and we thank Him that her pain has just up and disappeared. Thank you all for your prayers - God hears the prayers of His people.

Repeat blood cultures have been drawn, not sure when results will return. If they show no bacteria, Ava is cleared for discharge, barring any other unforeseen circumstances. Not sure if it's possible to be today, or if it may be tomorrow or the day after.


Prayer requests:

  1. Ava's blasts remain at 34% today (same as yesterday). These numbers need to go down.
  2. Pray for Ava to find a match. The decision hasn't been made to go for a BMT just yet, but they are planning for it.
  3. Continue to pray for wisdom regarding Ava's treatment. When Ava's induction period is over, (which is when this first round of chemo is "finished" in terms of effectiveness), the plan now is to start ALL treatment. They will know when induction is over when Ava's numbers start to rebound/go back up.
  4. Pray for discharge home soon (and to actually be able to spend weeks there)!
A note about being a bone marrow donor:
I have heard from a couple people who were previously contacted as an initial match for someone. They were contacted to go through more testing/paperwork to find out if they were a good match. Both expressed how they didn't realize the urgency of the matter, that these patients are really looking to find a match quick! Especially since some of these patients have a small window of time (e.g. remission) when BMT is optimal, it is imperative that you keep your contact info up to date and respond as soon as possible.

Also, if you have any hesitations, please think hard about becoming a bone marrow donor. It is a commitment to join the registry. While you have the prerogative to decline donation when you are contacted, it is devastating to the hopes of the family to have a donor back out. Please join the registry! But please only join if you are willing to follow through to the end. Thanks!


Let us rejoice together for this good day! We may not know what the future holds, but let us fully appreciate and thank God for the many blessings we share with the Lee family this day, and continue praying for more!

Platelet Donation

I also learned today about the importance of platelet donation! Many cancer patients, organ/marrow transplant patients, trauma victims and open heart surgery patients need platelet transfusions to survive. 

Platelet donation is done by apheresis, which is a process that collects your blood from one arm, sends it through a machine that separates the platelets out, then returns the remaining blood components back to you through your other arm. A major advantage to platelet donation is that in one donation, you can provide enough platelets for one transfusion, unlike the with whole (regular) blood donation. With whole blood, it can take as many as 6 people's whole blood donations to collectively make up one platelet transfusion, since the blood must be separated and pooled together to provide enough platelets. Platelets from a single donor is generally preferred, since it reduces the recipient's exposure to multiple donors. As we have seen with Ava, reducing her exposure to multiple donors' platelets can play an important role in minimizing her reaction to the transfusions.


I don't think you can donate platelets for a specific patient, but I understand that blood type is not a factor at all when donating platelets, so your platelets are useful for any patient! And... since platelets have a shelf-life of about 5 days, there is ALWAYS a need for platelet donors. Unlike with the marrow registry, you can donate platelets if you are 17 years of age, or possibly 16 years with signed parental consent. Note that donating platelets takes longer than donating blood; it may take 1-2 hours, but think of the life-giving results! If you are in the Chicagoland area, check out the LifeSource page to see donation locations near you. Click on a specific location to see if platelets are collected at that site.


Consider donating platelets - a very tangible way to impact the lives of many cancer patients like Ava!

Sunday

Ava experienced a good deal of neck pain in the morning, so they gave her some morphine which brought her relief (and cheer!), allowing her to be more lucid & talkative. She was otherwise sleepy much of the rest of the day. Her pain returned in the evening, so Ava was given some more morphine for pain relief. Ava vomited twice today, and Esther noted that there was no nausea associated with either of those episodes, (and unrelated to morphine) so the neck pain continues to be a concern. The doctors do not believe the pain to be caused by a tumor, but are nevertheless confused by it. Therefore, Ava will get an X-ray of her neck in the morning. Please pray for continued guidance in Ava's care, revelation and insight regarding her neck pain, and of course complete resolution of all ailments/disease!

Ava's WBC was down to 880 today, and her blasts were at 34% (down from 37% yesterday), so it's good that the numbers continue to go down, even though they are not as low as desired.


As posted earlier, Ava's platelets went down to 7, so they gave her a platelet transfusion tonight. Normally, they would wait until the morning when they are better staffed in the event something happens, but because her numbers are so low, they felt the need to give it to her tonight to avoid any bleeding episodes overnight. They pre-medicated Ava and did something to the platelets (?) to hopefully reduce chances of a reaction. The actual transfusion was uneventful thankfully, but Ava developed hives a short while after her transfusion, so she got an extra dose of Benadryl. An hour and a half later, everything seems to be okay with the hives gone... just a little stomach ache and Ava's settling down to sleep. Thank you for your prayers.


Please pray for Esther as she has been battling a cold. Her cough has worsened with some chest pain now. Please pray for Esther's health and energy during this time, and for Ava's protection that she wouldn't catch anything else.


As for overall treatment, the doctors are leaning more towards a bone marrow transplant (BMT), but they are still aiming to get Ava into remission first. If they are unable, they will attempt other methods to buy more time until a BMT.


Which brings me to a previous post about the two bone marrow drives that will take place next month! Please spread the word, increase awareness, and encourage people to join the registry, especially Asians!


Thank you for your faithful prayers.

Sunday, March 16, 2014

Platelet Transfusion tonight - looks okay...

Ava's platelets are down to 7. They plan on doing a platelet transfusion within the hour. Ava has been pre-medicated, and they did something to the plasma to try and minimize a reaction; please pray for an incident-free transfusion. Thanks!

Update 11:15pm - Transfusion finished about 10 min ago, and looks like no reaction! Thanks for your prayers! 

Update 11:40pm - Well, spoke too soon... looks like Ava's getting some hives, so she got an extra dose of Benadryl and is being observed. Thanks for your continued prayers!

Update: 1:20am - Hives are gone; Ava has a little tummy ache but is settling down to sleep. Thank you so much for your prayers (and for your fellowship in the ups & downs)!

Allow me a moment...

This post might be depressing, but please allow me a moment of anger, frustration, and complaining. I know the moment will pass and the peace will return but tonight I am in a pit of despair...just wallowing there. 

Ava had a difficult day with a lot of pain from the chemo and high fevers. I spent most of the day in bed with her as she battled through leg, neck, and chest pains. Mike took on Gwen-duty because Gwen had been expressing fears of abandonment lately. 

For this hospital admission, we were given a room with a spectacular view of Lake Michigan. During a rare pain-free moment, Ava and I climbed onto the couch and looked out over the waters. There was a full moon out in the middle of the day and so we began to count the airplanes that were flying close to it. 

Me: (looking up at the clouds) Ava, where is God?
Ava: In heaven?
Me: Actually, God is all around us. Not just in heaven.
Ava: Oh yeah, God sent his son Jesus down to earth. That's my favorite verse in the bible. 
Me: Why?
Ava: Because it shows he loves us.
Me: Where is heaven?
Ava: Way up there. (pointing past the clouds) But I'm scared to go to Heaven alone.
Me: Ava, in Heaven a thousand years is like a day. No matter who goes first, we won't have to wait long for each other.

And then we were distracted by another airplane flying close to the moon. But my biggest dismay is this: that I might have to send her alone to heaven. 

It seems like a long and serious journey and it's against every parent's natural instinct to wave goodbye as their child departs from them. I know it's irrational to think she will be scared because in heaven there is no more pain, no more crying, no more suffering...but the idea of my little girl being apart from us seems so wrong. Before her diagnosis, Ava would often ask if we would ever ever leave her. And we always answered that we never never would. The fear of losing Ava is strong and the possibility of not being able to fulfill that promise is crippling. 

Last night, Mike had a conversation with Gwen that was incredibly sad as well. I had not seen Gwen since we were readmitted to Lurie's the same day we had been discharged. As we ran out the door to take Ava back to Lurie's, Gwen screamed from the door, "Mama, please don't leave me. Please..." This feeling of abandonment must have overtaken her because when Mike went down to play with her the next day, she would not let him out of her sight. After a few hours of playing, she initiated this conversation with him.

Gwen: Daddy goes to church and Mommy goes to school everyday so nobody gets to see Gwennie.
Mike: Oh Gwen. That's not true. We are at the hospital for Ava because she is sick.
Gwen: Oh. Well, after we play, then are you going to leave me?
Mike: No, today I will stay with you.
Gwen: Oh. Then tomorrow you will leave me.
Mike: No, then tomorrow mommy will stay with you.

And with that, Gwen bounded off to play with some security in her heart. It is with incredible guilt that we attempt to balance our time between our sick child and our healthy one, knowing that both are delicate and need the love and attention of their parents. God help us to give them what they need despite our significant limitations.

Tonight, I took Gwen to the Water Tower so that we could spend some time together. I didn't realize how much of an impact it would have on me to walk through the same stores that I had gone to with the girls when Ava was still healthy--a mere two months ago. As Gwen and I built Lego people inside the Lego Store. I ended up weeping right there on my knees and we had to leave. 

The thing is, I can see Ava everywhere. She has left a thumbprint on every part of my memory. The fact that just two months ago we were a healthy and happy family and that today we are praying for a miracle for her life is surreal. Every step that I took outside of the hospital today required effort not to collapse and beg God to take this all away. Because if God's promise is that he will bless those that love him from generation to generation, what is going on right now? I continue to meditate on the truth that God's ways are higher than our ways. And my finite mind can not begin to understand his infinite wisdom and grace.

And although my faith is not shaken, I stand at the bottom of this mountain and look up with shaking knees. If it only takes a mustard seed of faith, why hasn't this mountain moved? Why is the bad news being piled on us to the point of suffocation? Why is it that we can't get up for a breath before the next wave of uncertainty sends us reeling under?

It is foreign for me to have so little hope to cling to. He has saved me time and time again in the past and yet lately, he seems strangely silent. And I continue to ask, how much more can we endure? So this is the timeline that I have put together in my anguish. 

Feb 26 around 6:00 p.m. - Ava gets admitted to the hospital for a wound that would not heal. She is no stranger to hospital admissions and we casually get settled for what we think is another typical hospital stay.

Feb 26 around 10:00 p.m. - Two residents enter our room to say that Ava needs to have her blood drawn again. There must be a mistake, they say. Her white blood cell count is very high but most likely it is an error.

Feb 26 around 11:00 p.m. - Those same residents lead us into a small family room to tell us that Ava has Leukemia.

Feb 27 - The oncologist meets with us and tells us that we have nothing to worry about. Leukemia is a common childhood cancer and although it sucks to have cancer, we will beat it. He assumes that Ava has ALL because it is the most common type of Leukemia.

Feb 27 (later in the afternoon) - Ava's scheduled bone marrow aspirate is delayed because they have found a mass in a gland near Ava's airway. They are afraid that sedating her will cause the mass to possibly make it difficult for her to breathe. However, she has enough blasts in her blood to send to the labs for a diagnosis.

Feb 28 - Another oncologist visits our room in the morning to regretfully inform us that Ava has AML (Acute Myleoid Leukemia) and that prognosis for survival is 50% with a possible need for a bone marrow transplant. We immediately prepare to transfer care to Lurie's.

Feb 28 (later in the evening) - We meet with Ava's oncologist at Lurie's who reiterates what she has heard from Lutheran General about Ava's diagnosis of AML but that there is a need for further study of her blasts. Her white blood cell count has raised to 90 some thousand and there are close to 99% blasts (or cancer cells).

March 1 - We get a call from the oncologist that, actually, the lab reports have come back to reveal that Ava has a very rare type of cancer called Mixed Lineage or, otherwise known as, Biphenotypic Leukemia. Lurie's sees about 1 case like this every year or so. She assures us that she feels like this diagnosis, although it is known to have a poor prognosis, can have a good outcome if we begin treatment with ALL therapy. 

March 2 - Ava begins ALL treatment. Her WBCs spike to over 100,000 causing her oncologist to immediately stop treatment fearing that more treatment could cause breathing problems and changes to Ava's mental status. Ava is switched to AML therapy and Gwen is sent to have her bone marrow tested for a match.

March 12 (early morning) - Ava goes into anaphylactic shock to her platelet transfusion. She is given an epi and doses of other medications that bring down the reaction. From this day forward, her eyes look sunken in.

March 12 (later in the afternoon) - We find out that Gwen is not a match making a BMT that much more difficult. A bone marrow donor with a perfect match may not be realistic as multiethnic patients have a lower probability of finding a perfect match.

March 13 - Ava's blast count is around 45% and trending upwards which is disappointing and concerning to her doctors. A blast count of under 5% at the end of induction is the typical standard for a "good" outcome.

March 13 (later in the afternoon) - -Ava gets to go home for 5 hours before having to return to the hospital to be readmitted.

March 14 - Her doctors begin to discuss changing her therapy back to ALL and doing a Bone Marrow Transplant depending on how Ava responds by the end of this month. Ava's hair begins to fall out in chunks and she begins to express her fears of being embarrassed and ashamed.

We have asked ourselves over the last few weeks, why couldn't this diagnosis have been ALL with a cure rate of over 80%? 

Why couldn't it have been AML with a cure rate of about 50%? 

Why did it have to be MLL-a Leukemia so rare that there is no standard protocol for treatment? 

Out of the types of MLL, why couldn't this be the one that responded well to the ALL treatment? About 80% reached Complete Remission with this therapy. 

Why is she not responding to the AML therapy? About 50% of the kids achieved Complete Remission with this therapy. 

Why is she one of the few that possibly needs both therapies? In a St. Jude's study, only 2 kids needed both therapies and both of those children ended up dying. 

Why couldn't Gwen be a match? There is a 1/4 chance of siblings matching. 

Why did Ava need to suffer through an anaphylactic reaction when her body was so weak? 

Why did we not even get to spend one night at home before having to rush back to the hospital? 

Why? Why? Why?

I sit here humbled that I don't know one answer to all of the questions we've asked. I don't have a clue--not even an inkling. But I do know this. There are two things that will result from this.

1) Ava will be healed even with all of these odds stacked against her and God will get all the glory.

2) Ava will die with all these odds stacked against her and God will still get all the glory because she played her part in his perfect plan.

And I will continue to be humbled that I was given the utmost privilege of being Ava Bright Lee's mama. We were smitten since the first gaze and we continue to thank God for the gift of love and life he gave us these past 5 years with her as our daughter. We ask that you continue to pray that Ava has more time to make a difference in this world and that we might have more time to enjoy her presence in our lives. 

Thank you for those that are in the trenches with us during this time.


Saturday, March 15, 2014

Bone Marrow Drives

I've been trying to finalize info about a bone marrow drive as quickly as possible to get the word out. However, I am now able to post about two bone marrow drives that will take place next month!

Date:  Sunday, April 6th
Time: 1:45pm - 4pm
Place: CNSCCC & Meadows Christian Fellowship Church
           2401 Kirchoff Rd.
           Rolling Meadows, IL  60008


Date: Sunday, April 6th (confirmed)
Time: 1:30pm-4pm
Place: North Shore Chinese Christian Church
           1250 Waukegan Rd
           Deerfield, IL 60015

We are looking for all donors between the ages of 18 and 44 to come out and join the registry! Please spread the word far and wide. We are making a special plea for all Asians willing to be a marrow donor! (Mixed heritage especially welcome!) Ethnicity and race play a factor in someone finding a match, so the more that join the registry, the more chances that someone like Ava will find a match!

(Data as of 2012): Out of 8 million people on the bone marrow registry, all Asian subgroups combined make up only 7% of the registry! Chinese make up about 1%, with Koreans less than 1%. Let's help to change those numbers!

Please note: joining the marrow registry means you are making yourself available to ANYONE in need of a match, not just Ava. We hope that if you are willing to donate to Ava, you would also be willing to donate to someone else. You can save a life!

This will also be added to the "Ways to Help" page for easy access. Feel free to ask any questions below. No fasting necessary, only a cheek swab is needed as a sample. If you are already on the bone marrow registry, great! No need to do another cheek swab - you are already in the system for anyone searching for a match. However, you can help by spreading the word and getting more participation. Thank you!

There are weight guidelines for joining the registry, and you will be screened for medical conditions that may affect your eligibility. Please check out the links to verify your eligibility, but feel free to contact me (Patty) at:with any questions.

Can't make it in person? No worries if you cannot physically attend either of these drives. You can join online! Just go to Be the Match and follow the directions.

Just a reminder that you can still participate in the Be the Match Walk/Run!

Update of sorts

I spoke with Mike tonight. The last temp that was taken showed no fever - however, I don't know when that was in relation to when the previous temp was taken, or in relation to any meds given for fever, but let's pray that this is an upward trend!

Thankfully, by the evening, Ava seemed to be in fairly cheerful spirits, demonstrating appetite and initiative to drink water to stay hydrated. Because of her cold, she isn't allowed in the halls to prevent spreading any respiratory ailments to other patients. So, she's spent some good time making crafts and trying to be creative about passing the time in the hospital room.

Some of her pain may be related to laying around/being in one position too much, so they are trying to get her to walk some more. She's been able to gingerly walk around the room a bit today, but needs some coaxing to do so.

I'm guessing what they may be looking for in order to discharge home:
1) resolution of fever
2) clean blood cultures, with no bacteria

Not sure if there are any other specifics, but we can at least pray for those things (among the "regular list")! Thanks!

Fevers Continue

Ava continues to spike fevers of 102 every 4-6 hours, and she has started complaining of severe leg, neck and chest pain. When I spoke with Esther in the late morning, the doctors had not rounded yet. I will update when I hear more. Thanks for your prayers!

Friday, March 14, 2014

What to Say?

Patty here... (just so you know)

I must confess that it's sometimes hard to know what to write, how to update. Even if there was information to share, it sometimes seems strange to just post it -- as if it were a business memo that needed to be disseminated. Of course it's much more than "business"... we are talking about Ava's life here. Maybe it's in the quiet of surrender, when you realize you have no answers and no control over life, that all you can do is just be silent.


Ava continues to be on broad-spectrum antibiotics as the blood cultures continue to grow out. Her hair loss has been so difficult for her to accept. Even with hope, it's hard for Esther not to struggle through this, and Mike has been feeling the pain as well. I'm sure that's an understatement. Esther will try to update some more tonight, though she is feeling rather drained. You know she will update when she is able.


Prayer requests:

  1. Please pray that Ava's blast numbers go down. The doctors admit that it's unusual and concerning that they haven't gone down more, but they are still hopeful for a favorable outcome.
  2. Please pray for God's divine wisdom and hand to guide the medical team regarding Ava's treatment. What will be the next step if this AML treatment doesn't work? What will be the next step if it does work?
  3. Please pray for Ava's neck pain. She continues to periodically and randomly complain of neck pain in a specific spot at the back of her neck that is unrelated to fevers. Because the doctors don't feel anything in that area and the spinal tap revealed no cancer cells in the spinal fluid, they are reluctant to do a CT scan and expose Ava to even more radiation. Please pray that the pain would resolve without any intervention and not be associated with anything further.
  4. Please pray for Ava to be comforted about her hair loss and to know that her beauty is unrelated to her outward appearance. Thank you.
If you would allow me to speak "off the record" a bit... each of you has played (and is playing) a cherished role in supporting Mike & Esther and their family on this journey. All your prayers lifted on their behalf; your gestures of love, whether big or small, recognized or unrecognized, are what enables them to continue forth. They thank God for each and every one of you. Yet even as family and friends, we are only able to walk with them so far. There are portions of this journey we cannot walk with them, and that is to be expected. But your continued notes of encouragement are able to provide great strength to them even when they must walk those lonelier segments, so thank you for not ceasing to pray for them, and not ceasing to comment and let them know you are thinking of them, even if you don't have anything more to say than that. While Mike & Esther can't really take a break from this journey they are on, it encourages them to know you are still reading and choose to sojourn with them in spirit. Thank you for choosing to stay with them.

I don't really like to mention my name on posts or write too much "from me" since it's not about me at all; but I know we are in agreement in our desire to support the Lee family, and I therefore count it a privilege to partner with each of you in doing just that. Mike & Esther thank you for your unceasing prayers and support!