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

Lullabies

 
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.

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.

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!

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.

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.

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."

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.