Wednesday, August 27, 2014

Chemo Postponed

Ava's chemo got postponed. Her ANC suddenly dropped since this past weekend, so she was sent home. Chemo is postponed until next Wednesday. We trust that God has His timing worked out; please pray for protection against any infection/fevers in the meantime. Thank you!

Why Seattle?

A question was asked as to why Mike & Esther are looking at Seattle as a potential transplant location, and in case others are also wondering, here is my attempt to answer. (I apologize in advance if this answer is way longer than you anticipated, needed or desired!)

Seattle doesn't have anything to do with a donor's location. Thankfully, no donor has to travel to give marrow, nor does a recipient need to travel in order to receive it. It's merely to see which cancer center could offer Ava the best care. With a number of hospitals in the country that perform bone marrow transplants, Mike & Esther are interested in having the best team involved with Ava's transplant. (Remember that the actual survival rate after BMT is about 50-60%). The cancer center in Seattle has a good reputation/relatively high success rate with bone marrow transplants, which naturally makes them a good candidate to perform the transplant.

However, it's not that simple to determine which transplant team is the best. Of course there are stats like success rates that serve to be a report card of sorts. But each facility has their own philosophy of practice and how they would approach Ava's treatment, and Mike & Esther need to figure out which facility they prefer in terms of skill as well as philosophy. You've seen how there isn't a clear "right" or standard way to treat Ava's cancer - which drugs to use, when, etc. So Mike & Esther need to weigh the different approaches that each facility would take.

There are other factors to consider as well. Even if they determine that Seattle has the "best" team to perform the transplant, it isn't easy to uproot and move to the west coast for a possibly undetermined amount of time for treatment.

There are many variables to consider in the grand picture, so your prayers for wisdom are appreciated. Hopefully the meeting in Seattle will give answers to many questions and shed more light on what may lie ahead.

On the home front, Ava is clear to get chemo again (the methotrexate), so she will be admitted to get that tomorrow (Wednesday), then discharged when the drug clears her system. Then they'll get another bone marrow biopsy to see where Ava is at (this will possibly be next week, depending on how quickly Ava clears the drug and when her ANC starts rebounding). The biopsy results will also weigh in on which direction treatment will take.

Thank you again for all of your prayers. The support that has been offered up thus far really touches the Lees' hearts, and know that they are grateful for each part you have played. I know they would really like to thank each one of you individually and feel badly that they could never catch up on that. But know that your part has served a purpose, big or small, seen or unseen. Thanks for your willingness to serve as their community.

Monday, August 25, 2014

Praises & Prayers

Ava was rushed to Lurie's earlier this evening for fever, cough and vomiting. Main concern was pneumonia, but chest X-ray did not show this, and her ANC is high (which is a good thing). Fever has not returned after Tylenol and Ava is doing better, so she was discharged around 2am; they will spend the rest of the night at the Ronald McDonald house before going home. Thank you for your continual prayers for Ava; we praise God for her discharge and high ANC which means her body is better equipped to fight infection. Not sure if it was something viral that set this off, but we continue to pray for Ava's health and no hospitalizations. Really, we continue praying (as all of you do) that Ava is healed of cancer completely!

As it seems more likely that a BMT (bone marrow transplant) is on the horizon, Mike and Esther are looking into the best location for this to take place. Mike is flying to Seattle this week to meet with doctors there and see if Seattle is a good fit for Ava. One of the things in discussion is what kind of transplant would be best for Ava: donor vs. cord blood transplant. Right now, there is a donor with a 7 out of 8 match, but no donor with a perfect match.

Seattle would not be covered under their insurance, which would mean really high out-of-pocket costs, yet if this is the best place for Ava, how can they let cost dictate her care? Please pray for safe travels for Mike and that God would grant Mike & Esther insight and guidance surrounding Ava's care.

Just a comment about prayer: sometimes it's hard to know how to ask for prayer. Meaning, do we specify certain requests or do we just share the situation so you can pray as you feel led and burdened in your own heart? We've done both and I don't think there's a right or wrong way. We appreciate all of you praying for Ava, and I know that specific prayer requests can be helpful in guiding prayers for Ava and shedding light on the concerns weighing on our hearts. On the other hand, there are times where I'm reluctant to specify requests, because I don't want to be too directive in how we "expect" God to work. His ways are higher than our ways (Isaiah 55:9). His love for us is equally beyond us in tenacity and measure (Psalm 103:11,17). So while we may pray for the medical team to have skill and wisdom, we pray more to have an openness that allows God to work in whatever way He chooses, for He knows best and loves us perfectly. We trust Him. When our hearts falter and our faith is small, by the grace of God, we will choose to trust Him and lean on Him for even more faith.

Thank you for all of your prayers. Thank you for the specific prayers, the "bigger picture" prayers, and the prayers where you don't know what to say but can only sit and lift up your heart. They are all appreciated and heard by our Father. And when we don't know how to pray, Paul's prayer in Ephesians 3:16-21 is a good one to turn to:

"I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."

We pray this for all of you: family, friends, supporters whom we've never met. May the Lord strengthen you with His power in your inner being, that Christ would dwell in your hearts through faith. May you be rooted and established in His love, experiencing in community the amazing, unending love of the Father that surpasses knowledge. May you be filled to the measure of all the fullness of God. We pray that our Lord would do immeasurably more than you can ask or even think, to the glory and praise of His great name.

Thank you again for walking with us. We are grateful for your fellowship on this journey.

Thursday, August 21, 2014

Finding Our Way Out

The hardest thing about writing is finding the words to convey the full weight of emotions we experience as we find our way through this mess. Words like sad, broken, and hard don't work anymore. It has been 6 months since we found out about Ava's diagnosis. Time is cruel. It doesn't cater to anyone. It flies when you need it to slow down. And it drags when you really need it move.

We seem to have run out of words because it's the same thing said over and over again. But how is it that it has not gotten easier to live this trend of (happily) mundane moments riddled by every deep seed of grief you can imagine? 

I guess the easiest way to get by is to routinely forget that we are living a nightmare. It's a terrible escapist mentality that eventually spirals down toward depression and then a lack of desire to live even the moments that are presently available. I find it difficult to clean a room, organize a shelf, unpack after a hospital run. Because it all seems so irrelevant, so insignificant.

I confess, I am in a depression deeper than I've ever known. The facade I keep is that we are going at this great, that we can get 'er done, that we can beat this darn cancer. But, the reality is, we are worn out by it. The very thought of this disease makes us nauseous. It has spared no one in my circle of family and friends. We are beaten down by it, drowning in our own private tears, freaked out of our minds that we could lose such a precious life...

I'm also scared to show this weakness because what will become of everyone who is rooting for us, who is looking for a victory story, for motivation, for inspiration. It's time to reveal that there is nothing to look at here. We are just a family trying to take in breaths amidst the soul sucking reality of living in the cancer world. 

But there is this thread of hope that I have to mention because, really, any amount of peace, of sanity, of beauty left comes from something far beyond myself: the hope of heaven, the truth of scripture, the love of God. These are anchors that dare not move us too far from shore. We daily depend on it, all of it, to crawl through another day and another battle and another disappointment with Ava's fight against Leukemia. 

Guys, seeing my daughter in pain has made me realize how absolutely beautiful that body was that lay broken on the cross 2000 years ago and how insanely ridiculous God's redemption plan for us was. If this world is temporary, only lasting a mere 90 years at best, I can not wait to live out eternity with my girl in a place where we can forever together worship the God that loved us enough to give up his own son. Even if no one can understand, He totally gets the searing pain of seeing your child laid out, defeated, and dying. And that is all the comfort I need for tonight. This is the beacon of light that finds me and leads me out of the darkness. 

"That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever." 2 Corinthians 4:16-18

Tuesday, August 19, 2014

On the Mend - Updated

Thank you for your prayers! Ava has been discharged and is almost home. Here's a word and photo from Esther:

Look at that smile! Ava is feeling so much better! The turn around time for her healing has been speedier than normal so thank you for your thoughts and prayers!

Please join us in praying for 
Anne Kao Won's daughter who was admitted last night for fevers. Ella Joy would really love to make it to her first day of school tomorrow. We love you Ella Joy and Ava is praying for you to get better soon!
Praise God for Ava's improvement! Let's continue to pray for complete healing! Esther herself has been trying to just keep liquids down (no vomiting), so she's staying away from foods for now. Thanks for your continued prayers.

Also, thank you in advance for praying for their friend, little Ella Joy, who is also battling cancer and currently in the hospital with fevers and low ANC.

Your prayers are invaluable.

Update @ 11:30pm:
Looks like they ruled out varicella zoster (chicken pox/shingles virus). Ava is doing well on antibiotics and antiviral. Her ANC was high enough to even resume chemo today (what a trooper!!) so she had that as well. It would be great for Ava to attend her first day of school this Thursday (Ella Joy's first day is tomorrow), so this is something we are praying towards as well. Thank you for partnering with us. 

Monday, August 18, 2014

Improvement Overnight - Updated

Thank you for your prayers. They swabbed Ava's wounds to culture and we are still waiting for test results to come back. Ava is on antivirals/antibiotics. Ava did better overnight. She was still itchy, but she wasn't waking every hour from it, and seems more content during her waking moments. Her wounds are beginning to scab over & dry up, unlike the weeping and crusting she was experiencing previously. She's been fever-free for  a day and a half. We are thankful for all of these things.

Ava's first day of school is this Thursday. On one hand, school may seem like no big deal to miss, and surely Ava would miss a good deal of it when she gets the MTX. But it also seems important to give Ava any sense of normalcy (is that possible?)

As it is, Ava is not on some other drugs she would normally be on (e.g. oral chemo, antibiotic) because they do not want to drop her ANC any further and make her more vulnerable to infection. So while Ava would normally be in next week for MTX again, we are unclear how her timeline is working out this round.

Thanks again for your prayers.

Update @ 12:35am:
Ava has really improved a lot today! Still not sure what they've determined, but Esther said Ava's wounds are SO much better. Praise the Lord! However... Esther may have caught some sort of stomach virus; projectile vomiting means she is unable to stay at the hospital or care for Ava. Please keep their whole family in your prayers. Thank you so much!

Sunday, August 17, 2014


It has been almost 6 months since Ava's diagnosis. Has it only been 6 months? Yet, has it been that long already? It seems long and short all at the same time. You have been through the roller coaster with us, celebrating the victories when they come and then falling on our knees with each disappointing news and heartbreak. Right now feels like one of those valleys. It's hard to describe the deep pangs of watching your child suffer and being utterly helpless to alleviate it. It's the helplessness that can sap the life out of you. And yet it is this same helplessness that turns us to our Heavenly Father to draw the life we need from the Bread of Life Himself. His grace is sufficient for us, for His power is made perfect in our weakness.

In Esther's words:

After countless pokes and prods to her eyes, skin, and other open sores, Ava's tears were unceasing and so were her apologies. "I'm sorry for crying, Mama. I can't help it. I'm hurting everywhere."

Her tears came down as big red drops as they mixed with the blood oozing from her eye sores. It looks like she has eczema herpeticum (cold sores all over the body and face), staph infections in her open wounds, and a case of chicken pox/shingles everywhere else. She is itchy and miserable and tired of being in the hospital. She is in complete isolation due to the sensitive condition of her fellow floor mates that are also immunocompromised which means no visits from anyone including Gwen. We are keeping her mostly sedated with anti-itch drugs that make her super sleepy.

Thank you for the prayers, texts, and messages of love and support. They mean so much to us and are medicine to our souls as we watch Ava have to endure so much pain. It hardly seems fair that she has to deal with this on top of her weakened state but it makes us all the more humble and dependent on everyone else and especially God.

We pray to get over this hurdle but we also remember all of our friends that are going through their own cancer treatments and other personal struggles. September is Pediatric Cancer Month. Please join us in "lighting it up Gold" so that we can bring awareness and more funding to these terrible diseases that are indescribably painful for children to endure. We understand that cancer is a disease that most people know nothing about until it walks into their lives. Well, I know that you, my friends, have walked with us and know the devastating effects and outcomes of pediatric cancer and we thank you for advocating with us.

Thank you for your unceasing prayers and support. They mean more than you know.

Running Tests

They are running tests to see what's going on with Ava. It looks like she does have the eczema herpeticum, but possibly chicken pox/shingles in addition as well. Ava is very miserable and itchy. Thanks for your continual prayers. We will let update you when we find out more.

Saturday, August 16, 2014

Rash Worsens - Back to Lurie's

The roller coaster continues...

Ava is going back to Lurie's due to worsening rash/lesions on her face that have spread to her body as well. The lesions are oozing and crusting; it's possible she has a viral condition called eczema herpeticum (think cold sore virus, but spread beyond the face and much worse). Ava had eczema herpeticum when she was about a year and a half old, and that was very difficult. Scratching the lesions can spread the virus to other parts of her body, in addition to making her susceptible to other bacterial infections.

Please pray for:

  • Ava's healing and proper treatment as needed
  • peace and alleviation of pain & discomfort
  • Mike & Esther - it's hard to watch Ava suffer
  • the Lee family as Mike will stay home with Gwen
  • God to continue revealing His glory and love even in these difficult situations
Thank you for your continued prayers.

Friday, August 15, 2014

Fever & Double Vision

Ava has been feverish and complaining of double vision. They are taking her back to Lurie's to do a blood culture. Since she is not neutropenic at this time, she probably doesn't need to stay at the hospital. However, driving into the city during Friday rush hour for a blood draw after just coming home yesterday is rather trying on the spirit.

Please pray for God's favor all around and for quick resolution of Ava's fever, double vision and grace for the trip there and back. Thank you!

Update @ 12:30am - The Lee family got home a little before midnight. Thank you for your prayers! We will let you know what they find out.

Thursday, August 14, 2014

A Birthday Discharge!

Ava and her family were discharged today - hooray! What a gift from above to be able to celebrate her 6th birthday at home with her whole family :) Thank you all for your well wishes and prayers for beloved Ava!

Possible Discharge!

Believe it or not, there's a chance that Ava could go home today! Her body has been clearing the MTX fairly well, making this a possibility. What a great birthday present this would be, considering today is Ava's 6th birthday! She's been enjoying the day at Lurie's playing and being with her family.

Thank you for your prayers; they will check her levels later this afternoon to see where she's at. We will update again.

Wednesday, August 13, 2014


Ava started on methotrexate (MTX), and I understand that things went really well. Now it's just a matter of waiting for the drug to do its thing and for Ava's body to clear it. Once it clears her system (and no other unexpected issues), she can go home.

Looking ahead, BMT is definitely in the picture. Though it's not an imminent decision at this point, it is something that needs to be actively prepared for, so Mike & Esther will need to start making some phone calls. I think they found two people that sort of match Ava (7 out 8 markers match; therefore no one is an identical or perfect match). It is desired to find a perfect match for Ava.

Thank you again for your prayers.

Tuesday, August 12, 2014

Back to Chemo

The Lee family enjoyed an incredible time in Florida a couple weeks ago at a cancer retreat with other families battling childhood cancer. What an incredible blessing to be able to connect with other families on the same journey. They returned last week.

Ava is supposed to start her methotrexate today. Due to the drug's toxicity, they will prepare to stay about 4-5 days inpatient until the drug clears Ava's system. Gwen may not be able to see Ava too much during this time. I resurrected the Google doc sign-up if anyone is interested in providing a meal at the hospital (no expectations). If you sign-up, please email me: naisula (at) gmail (dot) com in case I need to reach you with any changes.

Ava appears to be doing well; she is in good spirits and has more energy. However, she has recently developed some hives. They don't seem to bother her too much, but it is a concern still; perhaps there will be more clarity on the situation when they meet with the medical team to discuss some things before Ava starts the methotrexate.

Thank you for your faithful prayers and support for the Lee family. Sometimes it feels like we're saying the same things over and over so it's not always easy to know what to say. But Mike & Esther are so grateful to you who persevere in interceding on Ava's behalf and tirelessly support them on this road.

Please pray for:
  • wisdom regarding Ava's care - big decisions, small decisions... both for Mike and Esther as Ava's parents and caregivers and also for the medical team of doctors, nurses, pharmacists, etc.
  • good and effective communication among everyone involved
  • peace in the midst of it all, remembering and trusting that God Himself is indeed in control
  • Ava - what a trooper. It's probably not easy for her to anticipate being in the hospital for several days at least. Please pray for rest for both Ava and Gwen.
  • Gwen to still feel a part of everything, even if she may not see Ava very often during the hospital stay.
  • God's glory to be seen even through this cancer. He is good and worthy to be praised.