Friday, July 25, 2014

Biopsy Results

Just heard from the doctor: Ava's blasts are at 0.25%. Apparently, this is a decrease from the last biopsy. While we understood Ava's blasts to be 0.2% last time, the pathologist has on record that her blasts were actually 0.3%, so the 0.25% is a slight decrease from previous.

While it is not the MRD negative we continue to pray for, the docs aren't too surprised given that Ava essentially had another round of the same chemotherapy as last time with no new drugs. So they are glad that Ava's blasts continue to trend downward, and they plan to move to the next phase of "maintenance" where Ava will receive high-dose methotrexate (MTX). After this next round, they want to see that her blasts continue to trend downward, not remaining the same or increasing.

The MTX administration will be one week on, and roughly one week off (or until Ava's numbers start to rebound). Then she'll get another week of MTX, with one week off/rebound. This will continue until four weeks of MTX are completed, which can take about 2 months overall. I believe these administrations will also require an inpatient stay because of its toxicity, as they need to monitor Ava until the drug clears her system.

Ava will have the next week off from chemo before starting the MTX. I may resurrect the Google doc to solicit help in providing meals at the hospital, but I will let you know after we have a better idea of when Ava is scheduled for chemo and how long she might end up staying.

Thank you for your perseverance in prayer and support for the Lee family!

Hold My Hand

We have been going on bike rides as a family the last few nights. Mike rides ahead with Gwen in the trailer, Ava stays in the middle, and I head up the back. It's unbelievable that we are at the stage in life where our babies are actively participating in life with us.

Ava has been relishing these bike rides and so have we all. We start off around 8 when the weather cools down and we slowly and steadily explore our neighborhood. Riding behind Ava gives me time to think. (She bikes pretty slowly.) I see her gaze move from this interesting thing to that and I tell her to keep her eyes on the road. She stops to comment on the mailbox that looks like a cow. We see a bunny hopping through a yard. She asks questions that get lost in the wind and I have a chance to breathe all of this in from where I am. She rides tirelessly, stopping only for one thing: curbs.

The other night, we started off a little later than usual which meant that by the time we had sufficiently lost ourselves in the neighborhood, we realized it had gotten very dark. We turned our bikes around and headed for home. As the sunlight slipped below the horizon, she began to sing a song. "Shine, shine your light. Just a little bit is all we need. God, shine, shine your light on me."

And soon we were surrounded by darkness. Gwen needed to use the bathroom and we weren't far from home so Mike picked up the speed to get her back...which left Ava in the lead. She pedaled on as strong as ever and belted out her song, making up more verses each time. But every time we got near a curb, she stopped and looked back at me. "Mama, I need you. Will you hold my hand?"

We must have hit 5 curbs on the way home and each time she slowed down to a crawl and looked back at me expectantly. I never once felt annoyed or frustrated or disappointed that she couldn't get across that curb without my help. In fact, I felt honored that she looked toward me and trusted that I would get her safely across that obstacle.

Even knowing that God has more than a mother's heart, I still fret that I'm too needy when it comes to my fears. I still reach out my hand and ask Him to hold on. I still rely on Him to get me across. Yet, I'm pretty confident that He is not disappointed or discouraged by dependance, especially in my fears.

We are patiently waiting for the results of today's biopsy and it feels like a major curb in our lives. We don't know how we'll get across. But I do know that He has my hand and He won't let go until I'm where He wants me to be.

"Take My Hand, Precious Lord" -Thomas Dorsey

Precious Lord, Take my hand,
Lead me on, let me stand,
I am tired, I am weak, I am worn.
Through the storm, Through the night,
Lead me on to the light
Take my hand precious Lord, Lead me home.

When my way grows drear, precious Lord linger near
When my light is almost gone
Hear my cry, hear my call
Hold my hand lest I fall
Take my hand precious Lord, lead me home

When the darkness appears and the night draws near
And the day is past and gone
At the river I stand
Guide my feet, hold my hand
Take my hand precious Lord, lead me home

Precious Lord, take my hand
Lead me on, let me stand
I'm tired, I'm weak, I'm lone
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home

Thursday, July 24, 2014

Biopsy Done

Ava had her biopsy done today and everything went well. Thanks for your prayers! Now we are back to waiting on  the results. We will let you know when we hear; we are praying for good news (MRD negative)! Thank you for standing with us in fervent prayer.

Wednesday, July 23, 2014

Back to Lurie's - now discharged!

Ava is at Lurie's again for day 2 of fevers. She had a little fever yesterday that resolved, but had another low-grade fever this morning. Ava had a blood draw yesterday that showed that her numbers are starting to climb back up (which is good). She's still neutropenic with an ANC around 70, meaning that her body is not equipped to fight infection. So the neutropenic fever brings them back to the ER.

As of yesterday, the plan was for Ava to go in tomorrow for another blood draw. If her numbers are sufficient to have a biopsy done, she will have it the same day. (They want to see her ANC higher). Not sure how the current fever affects how these things play out.

Thank you so much for your prayers!

Update @ 2:20pm - Ava has been discharged! Her ANC has gone up to 400 since yesterday (!) and she is scheduled for a biopsy tomorrow. Praise the Lord! Thank you for your prayers; we praise God for His provision.

Monday, July 21, 2014

Next Step: Biopsy

Ava finished her 3rd round of chemo last week. (She had the initial "induction" round when she was first diagnosed, then she completed two rounds of "consolidation"). As the pattern goes, she has a round of chemo, then a bone marrow biopsy to assess her response to treatment.

So, they are waiting to get a bone marrow biopsy. Ava is scheduled for a blood draw tomorrow. Her lab results need to demonstrate that her body is beginning to rebound from the chemo before they will perform a bone marrow biopsy. Once her labs show this, they will get a bone marrow biopsy to evaluate Ava's response to treatment and assess her MRD status. Hopefully her biopsy can be done this week, but we will have to wait on the lab results from the blood draw.

We will keep you informed, thank you for your faithful prayers.

Friday, July 18, 2014

Waiting for Clearance - Cleared!

Ava sounds a WHOLE lot better today! Chatty, playful, chipper... she is just waiting for official clearance to go home. She's been fever-free for 36 hours but is doing really well, it looks like they will allow her to be discharged a bit earlier. We praise God for this!

Her RBCs and platelets look good after transfusion, though her ANC is still at zero (she did have chemo on Tuesday). She will continue taking antibiotics for two weeks just in case, though any fever will bring her back to the hospital.

Thank you so much for your prayers and support, as always. You are a blessing.

Update (3:55pm) - Ava was discharged and has been able to enjoy some time at a nearby park before they head home soon. We rejoice with her and continue to pray for health, healing and God's perfect peace.

Thursday, July 17, 2014

Transfusions Today - Update

Ava still has a low-grade fever, around 99. She was transferred to PICU around 3am, so everyone's tired. To Ava's dismay, they also gave her another IV line there so they would have another access just in case something happened.

Ava is currently a little more than halfway through her blood transfusion (takes 4 hours), and then she'll be getting a platelet transfusion after that. Not sure when projected discharge might be.

We pray for incident-free transfusions, fever resolution and clearance to go home soon. :) Thank you!

Update at 4:35pm -
Transfusions went well, thank you for praying! Ava received the full dose of both transfusions, and is getting some energy back. She was finally allowed to eat something, so that's good! (She hadn't eaten anything since yesterday's lunch). As far as fever/potential infection, Ava's blood cultures are negative (hooray), and she's been fever-free for a couple of hours. Ava needs to be fever-free for 48 hrs before being discharged, so possibly Saturday morning for discharge?

Mike is picking up Gwen so she'll be able to spend the night with Esther at the Ronald McDonald house tonight and not feel so left out. :) Thank you for your continued prayers.

Wednesday, July 16, 2014

Spiking a Fever

Mike & Esther are on their way to the ER with Ava right now, this time for a fever. She had a temp of 99 earlier, but then it climbed up to 102. With Ava's ANC really low (50), she isn't really able to fight infection, and any fever needs to be evaluated.

This is a discouraging development, seeing as they were just at the hospital for chemo yesterday (not to mention over the weekend), and knowing that Ava was supposed to go in tomorrow to evaluate her need for blood/platelet transfusions. It is unclear how this fever would affect her transfusions (i.e. if they have to be delayed), thereby further extending the hospital stay.

Please pray for:
  • quick resolution of Ava's fever
  • no need for transfusions
  • quick return home
  • peace and encouragement in the spirits of the entire Lee family
Gwen was sad to see Ava/her parents go, and Ava's sad to have to return to the hospital. We know that God is in control and His grace is evident. May the Lord's presence bring a palpable peace, unexplainable in tough times and giving strength in our weakness. May He bring the good that only He can in all circumstances! Thank you so much for walking with us.

Tuesday, July 15, 2014

Finishing Up this Round

Ava finished up this round of chemo today, which means that she will likely get a bone marrow biopsy sometime next week and see where she is.

They decided that from this point on, any time Ava needs a platelet transfusion, she will be admitted to the PICU for administration there. They will also hyperconcentrate the platelets, shortening the overall administration time. Ava was originally going to get both a blood transfusion AND a platelet transfusion today due to low levels, but they ended up sending her home to wait it out. They are hoping that her body will rebound on its own, without the need for either transfusion.

The plan is to return to Lurie's on Thursday to check her levels again. If Ava does need transfusion(s), she will receive them in the PICU, but will also need to be admitted/stay for 24 hours afterward. (That's the downside to getting transfusions in the PICU; it would require a 24-hour stay).

Please pray that Ava's numbers would increase by Thursday so that she wouldn't need any transfusion! We also continue to pray for complete remission, MRD negative with this next bone marrow biopsy.

Thank you for standing with the Lee family. Your prayers are so appreciated!

Saturday, July 12, 2014


Ava is home!!! Apparently Ava's platelets were high enough to send her home, she didn't need to get any more platelets today! The doctor didn't have any explanation as to why her platelets were as high as they were, given that she came in at less than 5 and received so little of the transfusion. (Her platelets were 36 or 37 today, passing the threshold of 20 to go home). We praise God for doing another wondrous work in bypassing the need for any more platelets and getting Ava stable enough to go home. Thank you, thank you for each of your prayers. All glory to God!

Still Needing Platelets

Ava had another reaction to the platelet transfusion last night, and it was bad. She reacted pretty much immediately to the infusion: coughing (meaning hard to breathe), body covered in hives and flushed face/legs, intense itching/scratching... except she would bleed from scratching because she didn't have enough platelets.

She is stable now, but her reaction seems to get progressively worse each time she has one. And she still needs platelets today. She will likely need platelets in the future as well. Please pray for wisdom for the medical team in discerning how to give Ava platelets in a safe manner, both today and in the future. We thank God for taking Ava (and Mike & Esther) through the evening. May His presence continue to be known in the valley. We continue praying for healing. We look to God for guidance. We continue praying for God to receive all glory through everything, for He alone is worthy.

Thank you for praying.

Friday, July 11, 2014

ER for Platelet Transfusion

Ava is at Lurie's to get a platelet transfusion. She had a blood transfusion on Tuesday when she was there for chemo. However, she started bruising the last couple days and had a bloody nose today, so she is back at Lurie's for platelets this time.

Since the clinic is closed, she will need to go to the ER for the transfusion, which means no heme/onc staff present to get line access. Please pray for a smooth transfusion, no reaction, and successful line access on the first try by ER staff, and for God's peace to cover over Ava and family. Thank you for your faithful prayers!

Sunday, July 6, 2014

Baby Mine

Back in April or May we were invited to a attend the play "101 Damations" presented through our local park district. One of my 4th grade students had a part in it and generously gave us tickets to come and watch. It was such a cute play and the girls and I were throughly enjoying our time. During the second or so act, there was a scene where Roger began to sing a song to the agitated puppies. It was titled "Baby Mine" and the lyrics went like this:

Baby mine, don't you cry.
Baby mine, dry your eyes.
Rest your head close to my heart,
Never to part, baby of mine.

Little one, when you play,
Pay no heed what they say.
Let your eyes sparkle and shine,
Never a tear, baby of mine.

If they knew all about you,
They'd end up loving you too.
All those same people who scold you,
What they'd give just for the right to hold you.

From your head down to your toes,
You're not much, goodness knows.
But, you're so precious to me,
Sweet as can be, baby of mine.

My eyes instantly welled up and I began to weep, right there in that dark auditorium because I could understand those words. I felt them with all of my heart. 

I will admit that this season of waiting has been difficult. It has been exhausting watching her body get pushed to the brink with chemicals and drugs that help but also hurt so badly too. There are no words to speak of the horrendous fear that overwhelms me at times when I think about life without her. I have a glimpse of how difficult it would be to take in a breath without her here because at nights it's so hard to sleep. The pressure that sits on top of my chest is tangible, as heavy as darkness itself. 

But I'm trying to fight it- to push back against hopelessness. The trick is to remember that all things, even the worst situations of life imaginable, have passed through the sovereign and loving hands of God. What more hope can I have but to know that my loving Heavenly Father sees me, knows me, sits by me, cries with me, and in the end, has promised that in all things he works for the good of those who love him and are called according to his purpose. I don't write these things lightly. In fact, I have had to stop many times in writing these lines because the tears are blinding. But it is in my brokenness, my wailing, my mother's heart breaking that I am beginning to understand how near God is. 

I won't sugar coat. My heart is in two billion pieces, constantly being shattered even during the good times because that is when I realize how very very good this life is with Ava in it. This baby of mine is so precious to me. I can see how precious she has been to you too and I thank you from the very deepest part of my heart for your love and support during this time. Thank you for your constant prayers, the meals, the financial support, the emotional support, and the friendships sustained. Thank you for not leaving us alone during this time even if it seems we've pushed away. 

My parent's friends came out and supported a Bone Marrow Drive at a large Korean convention in Wheaton this past week. They helped to add 250 more Korean donors to the registry. We cannot express our thankfulness for the generosity they have shown us through their service. There are countless stories of all of you supporting us in such sacrificial ways...thank you for carrying us when we are too weak to do the walking ourselves. 

Finally, we ask for prayers, that God would sustain us during these next few weeks as we wait for the results of Ava's bone marrow biopsy after she completes this round of chemo. And we never give up praying that she would be in complete remission with ZERO detectable cancer cells and that God would show his grace to us in this way if it is his will.

"Even the darkest night will end, and the sun will rise." -Les Miserables