Wednesday, June 25, 2014

Moment of Weakness

After she's fallen asleep, I usually take her hand in mine as I try to drift into that same place. Her hand is so tiny, really only the size of a doll's. How could 6 years of life fly by so quickly? How could 6 years produce such an immense amount of love, happiness, laughter, life? 

I'm flooded with the memories that won't stand back even though it's time for bed. A normal night is filled with tossing and turning and getting up a hundred times. I can't sleep. It's no surprise though because sleeping requires peace and I don't have much of that right now.

I feel bad admitting that my fear is overtaking me and stealing my peace away. I don't know how much longer I can sit and wait and wait and wait for an answer. God is silent and, yet, I feel he is near. It all boils down to this. Do I believe that he will work all this out for our good in the end? 

I wonder how life can be good without her? How can he expect me to take another breath when hers is gone? These expectations feel monumental and brutal and unkind. If my faith is being tested than perhaps it will expose a very weak one. I feel like I'm hanging on by the tips of my fingers--not to the truth of Jesus as my savior, but to how I will brush myself off and move and carry out whatever he has for my life when all is stripped away. 

I cry out for mercy every night but I know many godly parents have asked and begged and pleaded for their child's life only to have the unthinkable happen. So I'm in this place where my sorrow overcomes my sanity and I weep into the night. 

The thing is, I know he is with me, here on this bed, crying with me and feeling this unspeakable pain. And, therefore, I hold tight to the only one that is worthy of worship even in times of wreckage. 

Please continue to pray with us that Ava is completely healed after this next round of chemo and that this cancer will never rear its despicable head again.

Please also pray that everyone would be filled with wisdom as we begin to make some difficult decisions regarding her treatment plan. 

We want to say thank you, with our deepest gratitude, for your love and support during Ava's fight against Leukemia. 

Monday, June 23, 2014

Continuing Consolidation

Hi, friends! We had our church retreat this past weekend, and Ava & Gwen had a great time! (The rest of our families did, too). Good to catch up on some sleep since then.

Ava is at the Ronald McDonald house tonight in preparation for getting chemo tomorrow. The doctor decided to have her continue the consolidation this next month (which is the same chemo regimen she got this past month). So she will not skip to "maintenance" after all. After this next month, they'll check another bone marrow biopsy and reassess.

I had some fun conversations with Ava & Gwen over the weekend at retreat. I'll share a couple:

Gwen was playing with my hair. After gathering it up in a pretend ponytail, I said, "Ye-po-da!" (Which means "pretty" in Korean... though I'm not Korean). She looks over from behind me and says, "Ye-po-da? How do you know ye-po-da?"

Another time, on our way to pick up some things, Ava tells me about Pippen, their new dog:

Ava: "We have to buy food for Pippen all the time! But we just got a package in the mail. It's a HUMONGOUS bag of dog food - a year's supply of food for Pippen!"

Gwen: "What's 'humongous'?"

Something about the purity, innocence and curiosity of children makes conversations with them so fun! Add their cute little voices and pronunciations and you can't help but to laugh.

Thanks again for your faithful prayers! We cherish the opportunity to have many more of these precious conversations.

Thursday, June 19, 2014

Biopsy Results

Thank you for your prayers, concern and frequent checking for updates.

Ava's biopsy results show that she is still MRD positive. While her numbers went down from last time (her blasts are 0.02% compared to 0.06% last month), the fact that she is MRD positive means that this treatment isn't working as effectively as they would like.

The doctor will consult with the rest of the team tomorrow to confirm the plan at this point, but it looks like they may keep Ava on the ALL treatment despite her being MRD positive. Why not switch to AML treatment? We don't know exactly why, but it may be because they are seeing more T-cells remaining at this point, which is associated more with ALL, or because AML treatment has some similar drugs to what was used before (and neither has gotten Ava to MRD negative).

So, the thought right now is to have Ava skip to the next phase of ALL treatment, called "maintenance." She started on the "consolidation" phase of ALL therapy last month. Consolidation normally involves two rounds of the chemo regimen; Ava has only completed one round. They are thinking of having Ava skip the second round of consolidation due to:

1) the fact that Ava is still MRD positive, so this hasn't been as effective
2) Ava is not a candidate for the drug, Erwinia, which means she wasn't getting the full regimen anyway.

Skipping to the next phase of  maintenance involves getting high-dose methotrexate for 3-4 days as an inpatient. They will likely treat her this way for one month before taking another bone marrow biopsy to evaluate its efficacy and re-evaluate the appropriateness of therapy. It is unclear how many times Ava would need to go in for the methotrexate this next month, but the plan is that she would start next week. The aim is to see if we can get Ava into remission on drugs alone and avoid BMT if at all possible.

So while Ava's news of a MRD positive is a blow, God can still work (and is still at work!), so thank you for your faithful and undying prayers.

We praise God that:
1) Although Ava is MRD positive, her blasts have gone down from last month. Her levels need to be less than 0.01% to be considered MRD negative, so... we're close! (Maybe??)

2) There are still treatment options to consider right now -- options other than BMT.

Please pray:
1) For wisdom regarding Ava's treatment. This seems to be unchartered territory for the medical team, so there isn't a "clear" path for Ava's treatment plan. Please pray that God would make that path clear, in whatever manner He chooses, and that this path would be confirmed all around. We acknowledge that God Himself is the Great Physician. It is His wisdom we seek and healing from His hand we desire.

2) For peace for the Lee family during yet another "waiting" period. There seems to be a whole lot of waiting and uncertainty in leukemia; pray for God's presence to bring the peace that only He can give in times like these. Please pray for Ava to have peace as well, God to bring comfort and drive out all fear.

3)And, of course, complete healing!

Thank you for those who signed up for to deliver meals. We'll adjust the schedule as needed when we find out when Ava will be in the hospital. Thanks for your flexibility.

Still Waiting

Sorry I didn't get a chance to post earlier, but we are still waiting for the results and haven't received any word yet.

It's possible this is a good sign; as in the past, if there wasn't "enough" disease to detect, Lurie's had to send it out to another lab for processing. We don't know if this is actually the case, however.

We will update you as soon as we hear! Thanks for all of your prayers!

Monday, June 16, 2014

Biopsy on Wednesday

Ava is scheduled for her bone marrow biopsy this Wednesday. Esther posted the following on her Facebook page:

ava has been feeling the effects of chemo pretty hard for this round. she wakes up feeling unwell and nauseous. her gums are swollen and she has begun to get mouth sores. we are ready to be done but it looks like we still have quite a long road ahead.

her biopsy is scheduled for this wednesday so, if you remember, please pray for ava, that she would be MRD negative with ZERO detectable cancer cells and that the leukemia would never return in any form in the future. we know that life is busy so any prayers, whenever you remember, would mean the world to us. God is able!

Thank you for your intercession!

Meal Train

I added some more dates to the meal train. The Lees have not requested this, but I think they could use the help. It's been difficult for them to think about feeding themselves properly. Many of you have already helped out with meals in the past; thank you! No pressure or obligation, just wanted to throw some dates out there for anyone who is interested and able to support them this way. Let me know if you have any problems with the sign-up.

Remaining in prayer with you all!

Sunday, June 15, 2014

Broken Hallelujah

I have written and re-written this post too many times now. There are so many things I want to say to help you understand where we are now, to give you a glimpse into my heart, but I am realizing that it is too painful. I am so sorry.

I raised her with love. I nursed her with care. I covered her with hugs and kisses. She loved me with abandon. She grew my faith. She gave me a purpose.

Today, we ask for prayers. Our Ava can't die because then I fear all of our hearts will stop beating too. Please join with me in praying that Ava would be 100% MRD negative by next week's bone marrow biopsy.

I know many of you have prayed with me in fervency and with tears. You have showered us with blessings in every form. You have reminded us of your presence and we have not lacked in any good thing. We ask you, with humility, once again to storm heaven on behalf of Ava.

Patty covered all the medical side of things really well but to recap, Ava is allergic to one of her chemo drugs. We tried it in two different forms and now have run out of options for this drug. Yet, we have to reach MRD negative without its help by next week. In patients with ALL leukemia, any amount of cancer cells greatly impacts the prognosis of a bone marrow transplant. If Ava reaches MRD negative by the grace of God, we will continue with maintenance therapy for the next two years. This would be the most ideal situation. If not, she will be moved to AML therapy in hopes that we can get her MRD even lower. At that point, she may go to transplant despite the risks because that may be the only option.

I don't know what to say. I don't know what to think. We are holding her close and loving the heck out of her. We are cherishing the days. We are smiling a lot and laughing a bunch. We are weeping at night and praying our hearts out. And we are asking for more and more prayers from our friends and family.

We are stumbling around determined to praise God in all circumstances, even if it's just one measly broken hallelujah.

Friday, June 13, 2014


I just got a brief update that Ava is home (came home yesterday) and is doing well. I will update you when I hear anything more.

Thank you so much for your prayers, and for being an amazing support group for the Lee family.

Thursday, June 12, 2014

Reality Check

Thank you again for your continued prayers, messages and love. It's been a tough day.

Mike & Esther had a sobering talk with Ava's doctor today who reiterated the seriousness of Ava's condition. Of course they know it's serious, yet it's hard not have been lulled into a fake sense of "normalcy" because Ava seems to be doing so well on other levels, comparatively. The conversation was a sobering reminder that this leukemia battle is real and fierce. It isn't ideal that Ava reacted to the Erwinia, meaning she isn't getting the full chemotherapy regimen. While they could try desensitizing her to the drug, the risks seem to outweigh the benefits, as she may have an even worse anaphylaxis than before.

The doctor conveyed how important it is that Ava's next bone marrow biopsy show her to be "MRD negative" -- if she isn't, her all around prognosis goes down and this would be considered a failed treatment. The aim is not merely to get her numbers as low as possible, but to get her to MRD negative: remission. They are seeing that in ALL (vs. AML) patients, any presence of MRD significantly decreases the chance for successful BMT/recovery; Ava needs to be MRD negative for even a chance for successful BMT.

With that said, they are not leaning toward BMT for Ava at this point. Remember that BMT comes with its own set of risks and hurdles. If Ava is MRD negative, the plan is to stay the course and have her complete this two-year phase of chemotherapy. If she has residual disease, they'll likely switch her back to AML treatment which is the inpatient and more intense treatment.

To add to this, Mike went home earlier tonight to be with Gwen, as she had been struggling physically recently with cough/runny nose, progressing to all out crying from her stomach hurting. She eventually fell asleep late in the evening, but had some labored breathing so Mike brought her into the ER. Gwen has since been discharged with the thought that she was having an asthma attack, but Mike & Esther can't shake the nagging concern that Gwen's food allergies may be the source. It's been an exhausting couple days.

Please pray for:
1) Ava's complete healing; MRD negative (permanently!)
2) Gwen and her allergies - may God bring revelation and insight and healing to Gwen as well
3) Mike & Esther, for overall strength, perseverance and REST all at the same time.
4) Anything else you have on your heart to pray for.

Thank you.

p.s. I will likely get the meal train up again soon. I will let you know when I get an idea of helpful dates/frequency.

Wednesday, June 11, 2014

ER for Fever - Update

A few hours ago, Ava went to the ER for neutropenic fever. Not sure what this will mean for her chemo scheduled for later today (Wednesday). 

She is getting antibiotics and platelets, as her platelets are only 5.

Thank you for praying for the resolution of fever & neutropenia, and for Ava to still be able to get chemo this week (in addition to buoyed spirits and rest all around!)

Update: Ava's platelet transfusion went well (thank You, Lord!) She's also getting a blood transfusion today and will get chemo tomorrow.

Tuesday, June 10, 2014

Chemo on Wednesday

Ava is graduating kindergarten today! As a result, her chemo is rescheduled for tomorrow.

I believe she may have a bone marrow biopsy next week to see where she's at. Please continue praying that she will be MRD negative by then. If she is not, she will probably complete this treatment anyway, in order to get in her in the best possible position for BMT.

Please pray for both Ava and Gwen. Ava has been experiencing knee pain that keeps her up (or wakes her up), so not only is she in pain, but she's not getting enough sleep. It is unclear if Ava's knee pain is the leukemia or if it is something else. Gwen's allergies have also been acting up (exposure to food allergies somehow), which means she also has been up at night scratching and scratching and not sleeping as well, either. (This also means Mike & Esther could probably use more sleep, too!) So please pray for overall sleep and quality rest for everyone, but also for the elimination of the underlying causes of this lack of sleep. Thank you!

Thursday, June 5, 2014

Home Again

Ava is home again and doing well. Aside from a little diarrhea, she is overall happy and playing. Thank you for your prayers! I'll update if I hear anything else.

Wednesday, June 4, 2014

Staying Overnight

Ava started the new chemo drug on Monday (called Erwinia). I hadn't heard anything about how things were going until just now, but I imagine it's been rather draining.

The plan was for Ava to Erwinia on Mon/Wed/Fri for two weeks, starting this week. She went in today to get her second dose. In general, administration of this drug is pretty traumatic, fraught with tears, screaming, pain... just a lot to endure. She also received vincristine (another chemo agent) and got another spinal tap while still conscious, which was also rather traumatic as they didn't get it on the first try.

Ava's platelets were down to 9 today, so she needed a platelet transfusion. She was asleep during at the time, but in the middle of the transfusion, she bolted awake with itching, scratching, stomach ache, tears and real misery! So she got the Epi-pen and albuterol, and will now spend the night to be observed.

Her reaction may have been to the platelet infusion (as has been her pattern) or to the Erwinia; the docs don't want to take a chance with Erwinia as subsequent reactions may become worse/more severe. They will discontinue the Erwinia treatment, and Ava will return to getting other chemotherapy  every Tuesday. On one hand, this is a disappointment as she wouldn't be getting the full, recommended treatment regimen. The plus side is that Ava doesn't have to endure these administrations 3 times a week for two weeks. They will still do a bone marrow biopsy in a couple of weeks to see how she is responding and where we are at. Please pray for Ava to be MRD negative by that time.

I'm not sure if there is more to share right now (our conversation was cut short), but certainly BMT is on the horizon. Please know that all of your faithful prayers and persistent support is a true lifeline even if Esther and Mike aren't quite up to updating on a more timely basis. They feel incredibly blessed to have such an amazing support network.

Please pray for Gwen as well. She is not expecting her parents & Ava to spend the night at the hospital, though we are grateful for Esther's parents who have been loving the girls and able to care for them through all of this.

It certainly seems like a marathon - yet how do you exactly "pace yourself" through leukemia? There are times of intense sprinting, and other times of rest. It isn't quite like the typical marathon training one would imagine (or engage in, if you are a marathon runner). But with leukemia, you don't know when the end is in sight, how long you will have to run, or what kind of finish line you will cross. Please pray for physical, mental and emotional stamina, God's power in their spirits, His recognizable grace at every turn, and His miraculous blessing in the midst of trial. May He be glorified.