Saturday, January 31, 2015

Facebook catch-up

(From Esther) the way, baby seems content in the womb:

Clinic @8:00 am means two sleepy ladies. Also, baby has 4 more hours before he misses his due date. I guess he didn't get the memo. #40weeks #avastrong

The Boss is in full on wet wraps again. She's not thrilled but at least she's being compliant. #‎eczemabegone‬

A rare photo of us two because our baby is old enough to point and click. Maybe she's earned a spot on one of @kenny_kim photo adventures!‪#‎nofilter‬ ‪#‎growingup‬

Thursday, January 29, 2015

Day 69: Quiet for Now

There haven't been a lot of updates to share lately (in a good way). The relative quiet of the recent times is a welcome thing. Ava had a lumbar puncture done yesterday along with chemo as scheduled. This is to ensure no cancer in her CNS system. Today, Ava will have a relatively long day in clinic to get drug levels drawn at periodic times. She's at the clinic as I type, and is getting levels drawn every hour. She has 4 more to go!

Some more things we thank God for:
  • Ava continues on her steroid taper, and appears to be tolerating it well. She's down to less than 1/3 of her original starting dose from numerous weeks ago, so we're getting there!
  • Ava's CMV levels (the virus) unexpectedly went down on its own. The doctors are very pleased about this, as their main concern with her elevated CMV levels is the possibility for CMV pneumonia, which would be very difficult to treat/keep under control.
  • One of the anti-rejection meds Ava is on is cyclosporine, which needs to be within a therapeutic window, meaning the levels need to be high enough to be effective, but not too high to cause toxicity or unfavorable effects. As a result, this drug needs to have levels drawn periodically and doses adjusted accordingly. They seemed to have found a good dose at which Ava's levels remain within the therapeutic window without much adjustment.
  • Despite Ava's GVHD and occasional elevated viral levels (e.g. CMV or rhinovirus), it looks like she is on track to be discharged home to Chicago at pretty close to the day 100 mark, which would be the earliest she could go home. They've even begun some of the discharge procedures/documentation/training, etc. Woot!
The unseasonally warm weather in Seattle continues to be a blessing. Esther has been having more frequent, strong contractions, so this may be the writing on the wall that the baby might come soon (due date is tomorrow).

Ava continues to be hungry throughout much of the day due to the steroids, and if you have any experience dealing with hungry children, you can understand how this can color much of the day. But it's not as easy as just feeding her more, or giving her smaller, more frequent meals. Eating too much can cause her intense GI pain, so it's a balance. Please pray for patience and grace in dealing with the hunger/steroids/GI issues. Thank you!

After today, Ava isn't scheduled for another clinic visit until next week. We trust in God's timing for baby's arrival and are thankful for Mike's mom who will help watch Ava and Gwen when the baby comes. Thanks for praying for mom and baby's health and safe delivery!

To the Moon and Back

(From Esther):

Her love letters to me. I'll hold them close for life.
#my love #babymine

Tuesday, January 27, 2015

Bikes, anyone?

The Lees have been able to enjoy some needed down time lately, a timely gift before the baby's arrival! The main goal is to get Ava tapered off her steroids as quickly and effectively as possible. Once the steroids are discontinued, they'll be able to take her off the other medications she's taking to treat the side effects of the steroids. Thank you for praying for no flare-up of her gastrointestinal GVHD!

Esther's due date is quickly approaching (Jan 30). So far, besides irregular but uncomfortable Braxton-Hicks contractions, Esther's feeling pretty tired and the baby seems quiet for now...

In the meantime, the weather has warmed up some in Seattle... enough for Ava to want to go bike riding! Does anyone in Seattle have any bikes with training wheels to lend the girls These have been taken care of. Thank you! (around sizes 2 and 3, if that means anything to you), and possibly any bike helmets?? If so, please let me know at your earliest convenience: naisula (at) gmail (dot) com. Thank you in advance!

Here's a photo of Esther and Gwen taken on Sunday:
Clear day in Seattle!

And another photo of Gwen from earlier today:

Baby in wet wraps still doing her thang
and listening to music.
"Mama, I wanna do Michael Jackson
but it keeps playing other things."

Saturday, January 24, 2015

Quick Update

I'm so sorry it's been taking me a while to update the blog. The past few days were blissfully uneventful. We had a nice 3 day break from clinic where we lounged around and spent time as a family. I am so thankful for these quiet moments.

Ava had clinic today and her glucose levels went down! This is the most exciting news of the week because she had some very high levels that were concerning to the doctors. The last thing they wanted to add was the worry of diabetes but, by eliminating all unnecessary sugars, we were able to bring it down. Woohoo! As for baby boy, he still has one week before his official arrival. I have been having some irregular contractions so I will keep everyone updated!

Thank you for your prayers and your constant love and support!  We are so blessed.

Monday, January 19, 2015

Day 59 and some help needed

The Lees survived their week of clinic and various doctor appointments last week, and have had a few days' reprieve this weekend. Ava returns to clinic tomorrow.

You probably have a pretty good idea of the gamut of emotions a cancer journey brings, as you follow along and come alongside the Lee family. Even still, it's hard to convey all the things that well up within the heart of a parent who watches his/her child battle such a fierce opponent as cancer. There are many joys and sorrows along the way, victories and setbacks. There are days where you feel cancer will overwhelm you and crush your spirit, and then other days you find renewed resolve to beat this thing. One of the hardest things about cancer is that you never really know if and when you've "beaten" it. Yes, biopsies are done to see if there is any cancer detected, yet the results are only as good as the tests can detect. Years ago, "remission" was at a much different place than remission today. Test back then weren't as sophisticated as they are today, and we can only imagine that years from now they will get even more specific and/or sensitive.

The reality is that cancer is like a silent thief, lurking in the shadows, ready to steal your joy and very life at a moment's notice. Even if you hear the glorious words: "remission" or "MRD negative", you know in the back of your mind that there's always the possibility for cancer's return, and you have no idea when that might be... months down the road? many years from now?

Cancer permanently changes you, to be sure. You celebrate the little joys in life with greater fervor. You have a new perspective on life that you wouldn't and couldn't have had without cancer. You realize that many things that consumed your life prior to cancer really don't have great significance in the grand scheme of things. You appreciate the little things in life much more. Other times, you find yourself overwhelmed and unprepared to fully enjoy the little things in life, and worry that you're missing out on savoring the moments, not knowing how many more you'll have. Even if Ava is able to return to a 'normal' life, where her hair grows back and she looks more like herself, where she can attend school again (in a year or so), be around people and enjoy the things she used to, there will always be the awareness that cancer is lurking in the shadows. That's not meant to be pessimistic; it's just a reality. It's hard to even communicate this, at the risk of sounding ungrateful for all that God has already done. We are deeply thankful to God, rejoicing in His work and giving Him all glory for His faithfulness. We know He is good, and we know that He holds the future, that we can rest in His hands and trust His heart. Cancer doesn't keep us from holding on to hope in Christ, and we continue to lift up our eyes to the hills (Psalm 121). But we also know that all too often, families hear the dreaded word: relapse. And should that happen, His grace will be sufficient, as it has been already. God will provide. He will help us through.

It's hard to believe that it hasn't yet been a year since Ava's diagnosis. God has shown Himself to be incredibly faithful throughout. There are countless ways He has revealed His grace, mercy, love and peace. His loving hand cannot be denied. Even now, we recognize that Ava's current status is a result of His doing. We marvel at the fact that she engrafted within two weeks and is MRD negative! She's been doing remarkably well overall, despite having more difficult GVHD. She's out of the hospital and ready for a baby brother. But as you saw in Esther's previous post, the effects of cancer remain apparent. Ava still feels self-conscious about her appearance, even around family. There's the need to be vigilant about germs, avoiding crowds and essentially not really going anywhere. There are multiple medications to take, side effects and toxicities to look out for, and follow-up visits to make. But the medical care at Seattle has shown itself to be top-notch. The level of compassion and care from each of the healthcare professionals has been an overwhelming blessing. The generosity of others has deeply impacted their lives both tangibly and intangibly.

Being in Seattle itself has been a blessing as well, even despite being away from friends and family. I doubt Mike and Esther miss any of the cold temps that Chicago has experienced - they gladly accept 50s and 60s rainy weather instead of the below zero windchills! It's been great to be close to the hospital, not making any of the long trips back and forth to Lurie's. They're also removed from the major flu/viral illnesses that has really hit the midwest hard this year. (Just to illustrate: a couple months ago, one of our kids' schools had 100 students absent two days in a row! And another suburban school had a hazmat team come in and disinfect the place after there was some type of norovirus outbreak...) We're so glad for the Lee family to miss out on these things!

Some prayer requests:

  • For continued health of the family - Mike's parents are in town to help. Unfortunately, Mike's dad is sick so he has kept distance from the family. Please pray for full recovery. But praise God! It turns out that he is getting over the bocavirus, which the doctors consider to be the best-case scenario; apparently they feel more confident about helping Ava through her symptoms should she get the bocavirus. In contrast, RSV or the flu could be detrimental and even fatal, so the family needs to remain on high-alert to germ exposure and be vigilant about hand-washing and general hygiene. It's super important that they themselves avoid contact with sick people, since any one of them could be incubating something without knowing it.
  • For smooth delivery of Baby Lee - There are a number of logistics involved in having a baby out-of-town while caring for two children, one with cancer. Really, this is a bunch of prayer requests rolled into one. Please pray for continued health for Mike's mom, who will be caring for the girls when Esther goes into labor. Please pray for Ava's health, for no complications, setbacks, etc. Pray for Mike, who will likely juggle being at the hospital for the delivery and giving Ava her meds/taking care of any other medically-related care Ava will need. Please pray for health for Esther and the baby, for TLC for Gwen so she doesn't feel lost in the shuffle (and please pray for her skin to be under control).
Some needed items: The Lees could use a couple things; if any local Seattle people are able to loan them the following, please let me know! You can email me at: naisula (at) gmail (dot) com.  I will also add these things to the Seattle Info page for easy reference. As a reminder, the Lees' mailing address and Ava's new email address are posted on that page as well.

  • Two booster chairs - Ava and Gwen could use a little boost when eating/sitting at the table. If you have any booster cushions or chairs to lend them, let me know.
  • Slow cooker - It may be handy to prepare slow cooker meals on days when they may be at clinic all day. It would be an extra bonus if you happen to have any of those disposable slow cooker liners for easy clean-up! Thank you, these items have been taken care of!

Thank you in advance for your help and faithful prayers!

Sunday, January 18, 2015


My heart is grieved today. I have had one too many updates from fellow cancer moms who were given soul sucking news regarding their children. I'm in a dark place of despair and anger and helplessness. I confess that more of the day was spent in angry tears than in desperate prayer.

Cancer does not simply leave the lives of those it affected after treatment is done or a transplant is completed. It lingers on bringing waves of fear and insecurity that we fight to keep under control. Some days are easier than others. Today was not one of those days.

We haven't posted any pictures of Ava recently due to her sensitivity of her appearance. But, in solidarity with all the children fighting this horrific battle, I post one today.

This picture of my baby fighting cancer strikes a tender chord in my heart and is fraught with too many emotions to adequately articulate. I honor the children that fight so courageously and so gloriously. We stand by you, precious ones, and we will ever, ever cheer you on.

We want to be strong for you, Ava, but it has always been you that has kept us from buckling under the weight of this sorrow. We love you. We are proud of you. And one day when you can read this blog, we trust that you will understand the magnitude of what you overcame.

Ava-Christmas 2014

Less than one month later--Cushing's syndrome from high dose steroids to treat grade 4 GVHD 
(She is using her teddy to practice feeding her baby brother when he arrives.)

Thursday, January 15, 2015

Day 55

We are past the halfway mark to day 100! The first 100 days after transplant are the most significant, though admittedly the first year post-transplant is still super important in terms of minimizing Ava's exposure to germs and keeping her infection-free.

This week has been a pretty busy one with various visits for everyone. Ava will be in clinic every day this week (she will end up going tomorrow to check a drug level). The LP and chemo yesterday went really well, and in general, things seem to be going okay.

Ava continues her slow steroid taper (very slight dose decreases every 5 days), and so far she hasn't shown any signs of GVHD flaring up again, so that is good news. Thanks for your continued prayers that her GVHD be under control.

Ava's spirits are improved with being out of the hospital, though it's still a struggle for her to deal with the changes in her appearance, as those changes won't go away overnight. We continue to pray that God would give her comfort and assurance deep in her soul that she is beautifully and wonderfully made, and to find joy each day.

Esther has another OB/GYN appointment today. Baby Boy Lee's due date is in a couple of weeks! (Of course, we know that babies don't have a care as to what our timeline or calendar is!) Esther continues to have Braxton-Hicks contractions (we think), and it's hard to believe there will be a new addition soon. Lots of transitions underway.

In general, it's been a little more difficult to be in communication with the Lees now that Ava is out of the hospital. When Ava was in the hospital, there was usually some down time to catch up, even if late at night. However, they do not have the best cell reception at the apartment. So, unless I'm able to catch up with them during the day while they are out and about, it's unlikely we'll be able to connect later in the evenings. Thank you for your patience as we work these things through.

As always, your continued love and prayer support are an incredible blessing! Thank you for persevering with us.

I'll leave you with a couple of posts from Esther:

Throw back to healthier times.
Hoping for many more years with these precious people.

(And a fun conversation Esther had with Ava):
I was feeling some mild cramps. So I asked out loud, to no one in particular, "How can I tell if these are cramps or contractions?"
Ava nonchalantly says, "Time them."

Um. Ok. Too much exposure to the medical world?
‪#‎kidsthesedays‬ ‪#‎doctorava‬

Tuesday, January 13, 2015

Day 52 - First Day of Clinic

Ava will be going to clinic 4 days this week. Today she was seen by the "GI guru" doctor. Although technically, Ava's GVHD is considered a grade 4, the fact that she has responded rather well/quickly to steroids is very positive. In the hospital, Ava was initially started on steroids which she responded to. Then when the GVHD seem to worsen, her steroid dose increased. Again, she responded. However, at this higher steroid dose, Ava also began experiencing other things as a result: high blood pressure, CMV virus levels also increasing, and of course a variety of other side effects of steroids. The high blood pressure and increased CMV resulted in Ava being put on more medication to address those issues, so the doctor would like to taper Ava's steroid dose more quickly (back to her original dose). The goal is for Ava's GVHD to still be controlled at this lower steroid dose, while eliminating the need for extra medication to treat the other side effects. This would be great! Thanks for praying for successful tapering and managing of GVHD.

Tomorrow (Tuesday), Ava will have a platelet transfusion, and on Wednesday she will have a lumbar puncture with chemo. Thursday, she'll be in clinic for several hours to draw antiviral levels. Gwen will also be seeing a specialist or two this week, and Mike & Esther got to see a 3D ultrasound of Baby Boy Lee today. The word is that he looks like Ava & Gwen did around the same time. :)

Ava has been doing/feeling much better. Thank you for your continued prayers for her encouragement! AND... this girl has gotten her first email address! She would love to receive messages from her friends, family and supporters. We don't know if she'll be able to respond to your emails, so thanks in advance for understanding if you don't hear back, but please know that your message brings cheer to her soul. If you'd like to send her a greeting, send an email to: avabrightlee (at) gmail (dot) com. Thanks!

Saturday, January 10, 2015


Ava is officially discharged! I think they only left the hospital less than an hour ago, but Ava has indeed been discharged. Woot! I don't have any other details or updates, but I'll share if I hear anything else. Thanks for your prayers!

Day 49: Discharge Forecast Take 2

Ava has been doing okay... meaning that her gut seems to be moving fine and she seems to have cleared what was impacted, and her stool seems to be normal for the most part. She occasionally has some blood in her stool still. However, it's possible that she's eating at a faster rate than her body can clear it (keep in mind the steroids increase her appetite), so it's still a balancing act to make sure she doesn't get backed up again. Her mood is still kind of low and she's still feeling discouraged about her state/appearance.

However, the doctors are anticipating that Ava will be discharged tomorrow!! Yes, tomorrow -- even on a Saturday! What a blessing! Let's pray that the change of scenery will be helpful in lifting Ava's spirits, and that she might be able to move around some more and be more active, even if it's within the confines of the apartment.

They found BK virus in Ava (not sure where...maybe in the urine?) I'm not too familiar with this virus, but they don't consider it to be a problem at this point, but something to keep an eye on. As Ava continues to be immunosuppressed, they have noticed that her CMV levels have been increasing (this is another virus they discovered before transplant). You may recall that this virus stays in your system permanently but may remain dormant until activated for some reason. Ava has been showing some symptoms of a possible urinary tract infection (UTI); not sure if her urinary symptoms might be related to the BK virus, or if it's just a UTI, or perhaps end up being nothing. If she does have a UTI, this will not affect her plan for discharge.

Thank you for your continued prayers. We pray for successful discharge, and for the Lee family to be able to settle into the apartment as a family of 4 before they transition to a family of 5! Next week will be full of Ava's outpatient visits, as well as Esther's more frequent visits to the OB/GYN in this last month of pregnancy. Gwen will also begin having more visits with an allergist at some point. Gwen's skin has been flaring up again, so your prayers for her are appreciated.

Please continue to pray for Ava's spirits in addition to her physical activity and protection from various viruses. Apparently the RSV virus has been making its rounds in the Seattle and has been making some children quite sick. Thank you for praying for Ava's protection and path to full health!

Friday, January 9, 2015

A Day with Gwen

(From Esther):

Rare time with Gwen- on the way to the park. When we told her that Ava's discharge was on the horizon, she excitedly said, "Ava's not sick anymore?!"

Yes, baby, we pray Ava will no longer be sick.
#hope #gwenandava

(Note that they must have acclimated to the Seattle weather because Gwen looks like she's dressed for Chicago weather when it was 50 degrees outside!)

Tuesday, January 6, 2015

Day 46: Almost, but Not Yet

Thank you for your prayers. It was decided today that Ava will not be discharged tomorrow after all. The reason is that she had another really painful episode in the bathroom today, and the doctors feel it would be better for her to remain in the hospital until all the stool has cleared her system and they have a chance to observe her afterwards to ensure that her pain is due to the impacted stool and not to GVHD. She has a good amount of stool still in her gut, so it may take a couple more days or so for it to all clear, and you may recall that there is no discharge on the weekends, including Fridays.

Thanks for continuing to pray for Ava and her pain, GI health, and her spirits. Please pray for the Lee family to have stamina and patience for the days ahead. Please pray that Ava will be discharged and stable at the apartment before Baby Boy Lee makes his debut! It would be wonderful for the Lee family to only deal with one hospital at a time. ;)

Correction: on a previous post, I said that the doctors felt Ava's case of GVHD is one of the "most severe" they've seen. That was incorrect; they do say that it is one of the "more" severe cases with cord blood transplant, but not that it's one of the most severe.

Also, the Ronald McDonald house mailing address posted on the Seattle Info page will continue to be good even after Ava is discharged.

Thank you for your loving prayers!
I'll leave you with a photo of Gwen, from Esther:

This baby girl is one funny, sacrificial, and loving child. Her name means "blessed" and we sure are. It's not easy being a sibling to a cancer kid, but Gwen's got it down.
‪#‎mysunshine‬ ‪#‎boss‬

True Beauty

(From Esther):

"I am ugly now, Mama."

No, Ava. You are the epitome of beauty. You symbolize strength, stamina, and courage. Your body bears the marks of a warrior who has gone to battle with the resilience to never ever give up. You have endured more than the average man and I have yet to see a face more radiant than yours. We will walk with you to the very edge, and then we will carry you the rest of the way should you falter. 

Target discharge: Wednesday

Yes, you read that right. They are looking to discharge Ava this Wednesday! Of course, this is assuming no other developments/complications arise... (thanks for praying for that!)

The doctors had just shared those thoughts about discharge this morning when Ava had another extremely painful episode in the restroom later on. She was doubled over and crying out for mercy. This was alarming to everyone, as she seemed to be responding to the steroids, and they had only just begun her slow taper. If her GVHD was worsening with just a slight steroid taper, this would not be a good sign. While there are other options available to try and get the GVHD under control, it's better to have it responsive to first-line therapies. 

Thankfully, it was discovered that Ava's pain this morning was not due to GVHD, but to the fact that she has impacted stool. No one is glad that she is experiencing excruciating pain from severe constipation, but we'd rather deal with constipation than worsening GVHD. She was put on some laxatives, and they seem to be helping. It's a complex picture of so many different things: Ava is put on steroids to address the GVHD; the steroids also increase her appetite, (which in turn can contribute to weight gain) and cause her face to be swollen; the pain meds she is on can also cause constipation; even though she is eating more vegetables, her overall food intake has jumped, which may be why her body is slow to catch up with all the digestion, thus the constipation. While laxatives can help, they also have to watch that they don't overdo it and cause diarrhea, as this will also affect her body's cyclosporine absorption. Ultimately, the goal is to clear her body of impacted stool (then stop the laxatives), taper the steroids and hope that her GVHD doesn't worsen/come back as a result, and minimize Ava's pain. We want Ava to be able to eat, digest well, maintain consistent levels of cyclosporine, have minimal GVHD (no pain, no blood in the stool, no diarrhea, etc.) Thanks for praying.

Please pray for Ava's spirit as well. As Esther mentioned, it's been hard for Ava to deal with the physical changes in her body due to the medications: swollen face, weight gain, facial hair and mood changes (whether as a result of meds or because of the physical changes). The steroids are making her really hungry, so she wants to eat often. She's feeling discouraged about her appearance, so she's not terribly motivated to do much or be active (which may also contribute to constipation). This all feeds into her feeling down about herself and situation. It's a lot of stuff for a 6-yr-old to deal with. Thanks for continuing to pray for Ava's spirits to be lifted, for her to be encouraged and reminded that her beauty comes from within, not from outward appearance. We all know she is beautiful, inside and out! If you could send Ava a card to cheer her up, I'm sure she would love it! You can check out the Seattle Info page for the mailing address. Thanks!

When Mike & Esther first heard that they were "upgrading" Ava's GVHD to a grade 4, it was concerning as they understood grade 4 to be potentially fatal. As you know, GVHD is a concern because it means the graft is attacking the host body. Some level of GVHD is desired, as that would suggest that the newly transplanted cells are also attacking any remaining leukemia. But uncontrolled GVHD can be fatal, as that means the graft continues to attack the host unchecked. There is no known correlation between the level/grade of GVHD a person experiences and the degree to which cancer cells are being attacked. It simply cannot be known how much or how well the graft may be fighting cancer cells, only that we believe it is happening. While they reassessed Ava's GVHD to be a grade 4, the doctors said they believe it to be on the lower end (or milder) side of the grade 4...

The doctors said that Ava's GVHD is one of the more severe case they've seen with cord blood transplant. If Ava is able to be discharged on Wednesday, she'll also be able to follow-up with another doctor (on an outpatient basis) who is known to be a guru in GVHD, so they are glad for that.

So, GVHD is one thing to keep an eye on because it can be fatal. The other common cause of death is infection. As Ava is on steroids for her GVHD, the steroids are also an immunosuppressant, making her more susceptible to infection - another reason to taper the steroids as much as possible. And even if Ava was completely off steroids, they have to remain vigilant in minimizing her exposure to crowds and other potential germ pools. How long do they need to do this? Apparently for about a year.

We are thankful to have a date of discharge in sight! Thank you for following along and keeping these concerns in your prayers. You make up the bulk of our army of warriors. You are not taken for granted, nor unnoticed (even if your prayers may be unseen by man). Thank you!

Monday, January 5, 2015

Day 45: Are we there yet?

Today is day 45 post-transplant. Ava has been in the hospital for over 6 weeks since her transplant. But as she was admitted about 8 days before her transplant, her total hospital stay has been about 7.5 weeks. It seems perfectly understandable to utter the words, "Are we there yet?" as we look to discharge.

They say that this week is a possibility for discharge. Everyone hopes it is. (But that also makes it sound unlikely that Ava would be discharged today). Many days have come and gone with talk about potential discharge in the near future, but it keeps getting pushed back. The main issue is Ava's GVHD in the gut. Her episodes of intense pain didn't seem to match the former assessment of grade 2 GVHD. So they did an MRI last week, and as Mike and Esther mentioned, they adjusted Ava's GVHD to a grade 4, being more severe (and the highest grade level). She was put on IV steroids to help her gut heal. This in turn improved her body's absorption of cyclosporine, where her levels became too high and a couple of doses were skipped as a result. She remains in the hospital while they try to level things out, help her gut to heal as well as ensure that her body is adequately absorbing the cyclosporine at appropriate levels. Ava will begin a slow taper of steroids over the next weeks, decreasing the doses in small increments over an extended period of time. Tapering the steroids might also mean that Ava begins to experience more pain again, so this will be a balancing act. We may not even be completely clear about what we're dealing with exactly and how to effectively treat/manage all of it. We are reminded (again) of the reality that we really don't have any control in our lives, as often as we may deceive ourselves into believing it. We remain in God's hands.

Admittedly, it is wearisome to be in the hospital this long, to bear with medication adjustments (in addition to the administration of so many meds), to endure the unpredictable episodes of Ava's pain and witness the effects of steroids on Ava's body and mood. Then there are the other inconveniences of having the family split in two different places and going back and forth between the hospital. Surely there are more inconveniences that come with such a hospital stay that we do not realize (like leaving your cell phone in the other place or forgetting your hospital access card at the apartment. All hypothetical, of course. Heh heh). This isn't to say that we have forgotten God's goodness. On the contrary, we recognize that Ava's transplant experience has been unexpectedly good. Has she not fared well, considering all her life-threatening allergies? Did she not engraft in two weeks? Haven't people so graciously come alongside the Lee family in more tangible ways than can be counted? Aren't your prayers being heard by our Lord? Hasn't God made His presence known in the deep valleys? Yes, yes, a thousand times yes! So it is not with ungrateful hearts that we admit this road to be wearisome. It's just a reality.

Christ Himself knows what it means to walk a weary road. He entered Jerusalem on Palm Sunday, knowing that He was beginning His ultimate walk to the cross. Though people waved palm branches at Him that day and shouted, "Hosanna!", He knew that too soon those shouts would become accusations, insults, taunts and jeers. He knows how it is to begin a hard journey.

On the night of His betrayal in the garden of Gethsemane, Christ prayed and asked if God would be willing to change His plans, to redeem mankind through another means than Jesus being crucified. He knows what it means to be given a bitter cup to drink.

Yet in the same prayer, Jesus said, "Not my will, but Yours be done." He knows what it means to surrender to the Father's will and wisdom.

After one of Jesus' own disciples betrayed Him, Jesus was beaten, given a crown of thorns, and tasked with carrying His own cross as onlookers spit and insulted Him. He remained silent, choosing not to defend Himself even as He was crucified. He knows what it means to suffer.

After His death, the temple veil was torn in two, signifying that there was no longer a need to separate God's presence in the Holy of Holies, normally accessible only by a high priest once a year. Through His death, Jesus became the High Priest through which any person can approach God's throne of grace. Three days later, Jesus rose again from the grave - death had no mastery over Him. Hallelujah! He knows what it means to be victorious.

So in these moments of weariness, we look to Christ as our example. We take encouragement from knowing that He knows what it means to be on a hard journey, and what it's like to endure difficult trials and suffering. He also know what it means to surrender to God the Father and to claim the greatest victory known to man! We pray for Ava and the Lee family to be refreshed in their souls and for the grace to surrender to God's plans and rest in His timing. We wait expectantly for the victory to come, however that might be. Not because we can will it or manipulate it, not even in our surrender. Though we "wait expectantly," that doesn't mean we are passive. Indeed, we pray boldly and earnestly. We wait expectantly even while we pray because Christ has already won the victory, and He has invited us to share in it. Praise be to God. Thank you for praying.

Still Fighting

"When you die, that does not mean you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live. So live, live, fight like hell. And when you get too tired, lay down, rest and let someone else fight for you." -Stuart Scott

Thank you for fighting for Ava.
‪#‎day44‬ ‪#‎stillfighting‬

Saturday, January 3, 2015

Day 42 (Friday)

(From Esther):

Day 42: Ava has spent the last 3 days sleeping most of the day. Since she is on very high doses of steroids, she has developed some symptoms of Cushing's syndrome with the most noticeable symptom being weight gain in her face and trunk. This syndrome is also known to cause depression and Ava has been crying off and on telling us that she is sad. The cyclosporine medication is also causing excessive hair growth in her face and Ava has been a bit distressed about it. The main concern for us is her inability to stay awake and her loss of interest in playing and doing things she normally likes to do. Thank you for following our journey and for the constant encouragement you have given us through your prayers.
‪#‎day42‬ ‪#‎alittleblue‬

Friday, January 2, 2015

Post from Esther (backdated)

The last few days were spent with Ava catching extra zzz's and Gwen grooving to her own beat as usual.

Ava's grade of GVHD has been regraded from a 2 to a 4 (the most severe grade). So far, we are keeping it under control with steroids and hoping that she does not get any infections from the suppressing of her immune system. Hearing that the GVHD is a grade 4 is scary for us as parents and extremely painful for Ava. If you remember, please pray that Ava might heal quickly from it and that the GVHD would not manifest itself as a chronic problem in the future. Thank you to all of our friends and family for trooping along with us through the trenches!

Day 1 of 34229834 in Giving Thanks

On this first day of 2015, we owe so much thanks.  It will take more than one day to cover it, and it really cannot be done adequately at all.  The first thing that comes to mind today when attempting to express our gratitude is to have fun with the alphabet, just the first thing that comes to mind when thinking of each of our 26 English letters.  But really, this isn't Day One of being thankful, because every day holds the gifts of life that have made us feel, think, or shout, "Thank you!!"

Again, this is just "Day One" in an endless desire to express our thankfulness.  In no way can we cover it all.  But I hope each day will find a connection point with many other people, places, and things that have played a part even if not explicitly mentioned.  So here it goes for today:

A is for Ava.  The way she has faced this barrage of attacks against her life - the allergies, leukemia, chemo, irradiation, a dozen meds per day... the more she goes through the more I can't help but treasure her.  Tomorrow is her 14th and last scheduled daily dose of receiving about 34 milligrams of prednisone (steroid medicine).  I've heard of "roid rage" being common among patients taking this much prednisone.  But of all the people in our family, she hasn't been the one raging at all.  What a sweetheart.

B is for Brennan.  He is a sweet little boy Ava's age who was in the same preschool class with her.  I'm not sure how much they even talked during the daily grind of coloring and show and tell, but I learned soon after Ava's diagnosis that he would pray desperately for her on a daily basis.   Ava has many heroes in her life, and he's one of them!

C is for Church.  As a pastor, I've had the privilege of connecting with dozens of churches in our area on a personal level.  Every single one of these have reached out to us by making sure that all their people were keeping us in prayer, or sending gifts on behalf of the church, or sending messages of encouragement.  Of course, the epicenter of the love we've received has come from my own church, North Shore Chinese Christian Church in Deerfield.  They have provided for my family all these years I've been with them, providing everything it takes spiritually and materially to support a family in the North Suburbs of Chicago.  When Ava's cost of health insurance increased by 700% two years ago after all her allergy related hospitalizations, they met that peculiar challenge as if it were their own problem.  When the decision was made to go to Seattle, I wanted and needed to be by Ava's side and focus on her getting better.  All the support from my church not only stayed the same but increased and it carries us through this season so that we can go home (hopefully soon) and carry on without wondering who owns the aluminum siding, the brick fascia, or the swing set that our friend Troy built for the girls.  But most importantly, our church is the most tangible base from which our faith, hope, and love interact as we face the daily events that seem to be way beyond our comfort level.  We couldn't have made it this far without our church family, not even close.

D is for Dr. Colleen Delaney.  For a child especially, it takes everyone in the medical system to make it work, including NP's, CNA's, EMT's, just about everyone we meet and countless others we don't.  So we could never make the decision to come here based on one person alone, and not without knowing just how the medical culture works around here.  But without that initial consultation with Dr. Delaney, we could have easily ended up at many of the other exceptional hospitals, including the option to stay at Lurie Children's in Chicago.  With Dr. Delaney's intense focus on research and needing to push forward with her own breakthrough in stem cell expansion, I assumed that she could only direct me to colleagues who would be available.  But from that one e-mail, it really seemed that the Red Sea parted so that, face to face, she could present us with the trifecta of what Seattle Cancer Care Alliance, Seattle Children's Hospital, and Fred Hutchinson Cancer Research Center were doing for those in need of a cord blood transplant.  This happened because Dr. Delaney's heart goes out to children facing incurable diseases, and she stormed out of the gates for us to explain how much hope we must have for Ava.

E is for Esther.  From the moment things went from bad to worse, Esther did what I couldn't or wouldn't do: let it all out.  We were scared the moment the resident said the words, "leukemia."  The attending physician jumped the gun that day by more or less assuming it was a certain type of leukemia and not a different kind, which he made to sound far scarier at the time.  The following day, a specialist apologized and said that it was actually the other type.  (He was actually also incorrect because Ava's diagnosis ended up being a combination of both.) Maybe it didn't help that this doctor happened to be Korean, from which he may have felt the freedom to deliver the news in a rather grim and sympathetic, fatherly way to Esther.  It caused her to abruptly leave to find the nearest available room, away from everyone.  That is where she unleashed a sound that shook the floor.  I can't describe it other than to say that it was filled with years of regret, a desperation to just wake up to anything except what was actually happening, and an incalculable anger that I wouldn't dare try to specify at that moment.  As I went to look for her, I saw terror in the eyes of nurses standing by, suggesting to me that they've never seen or heard a response like that before. Up to that point in many, many of Ava's hospitalizations, I had never met or even seen a chaplain before.  Somehow, one was already there in that room with Esther, trying to console her.  From that day on, she has continued to share this journey with others very openly, and I have viewed her blog entries as reverberations of the piercing cry that she let out that day on February 28th, 2014.  I soon realized that expressing her grief and doubts was just as important for her own well being as much as anything else.  I was reminded by a pastor friend who has known Esther from her childhood, that should Ava's health continue to decline, I would be forced to speak hopefully and rehearse my faith due to the nature of what I do.  But Esther would not have that impetus - no outlet to remind her of what we hold on to beyond our present circumstances.  She perhaps would suffer a decline into isolation that no one could really stop.  But because of her natural transparency and courage to communicate, in these and many other ways it seems as if she's not at a disadvantage after all.  This has inspired many people in the midst of our trials, and being one who is crazy about inner peace and hope, having a wife from which it is ignited on a regular basis is life-giving and builds my own confidence during this time.

F is for Family.  We are heading into the first week since being here in Seattle in which it'll just be the four of us, absent of any of our extended family members.  People around us have been pleasantly surprised to see the kind of support we've enjoyed from both sides of the family, who have somehow managed to be with us despite coming from places like China, India, and of course back home in Chicago.  They're here for Ava, of course, which makes me feel even worse about how I've made them feel while being here, mainly in terms of forcing them to adjust the way Esther, Gwen and I have had to.  I have never been so downright evil toward these people that I love.  When one was sick, I turned on her as if she were my enemy.  "Stay back - five feet away.  You can't come here.  Don't even look at Ava.  Go home."  I was told that even the common cold could threaten the success of Ava's transplant.  So in addition to enforcing hand washing and opening doors with elbows onto an older generation that doesn't understand what the big deal is about germs, I quarantined them from Ava.  If it weren't for what attaches you to your family members, the damage would have been permanent.  But I have the luxury of seeing them soon and hugging them and celebrating with them all the great progress we've seen, even though I spent days giving them the evil eye and resenting their presence with us, making them feel so helpless at how unhelpful they were being.  In truth, they were everything we needed them to be during this delicate mission, and they served to be the therapeutic bullseye for my own anxiety and lack of faith.

G is for Gwen.  She's just hilarious.  Half the time I'm with Gwen, so half the time I'm laughing.  She's such a funny little three-year-old whom I love to death.  I can't believe she's here with us, and I couldn't be happier.

H is for Humana.  No joke.  It's the health insurance company we parted ways with once we were required to switch in order to come out to the West Coast.  They provided coverage for us throughout all of Ava's battle against her allergies and countless hospitalizations.  They are not the biggest company, but they functioned as if our biggest financial hurdle of our lives was completely manageable.  They ended up covering the bulk of these medical bills with such kindhearted and thorough support.  It surprised me to be on the phone with a nurse whom they commissioned to talk to us.  I could be cynical and interpret this as the company wanting to make sure we're being wise about how we manage Ava's health so that we don't set off unnecessary treatments or pharmaceutical needs.  But all I ever heard is, "How are you being treated?  Do you have everything you need?  Is there anything we can do to help?"  I understand how hard it can be to know when to respect or even admire the middle man in the world of healthcare.  Humana by all means makes it on the ABC's of what I'm thankful for.

I is for Islands.  We have to cross ocean water to get to some places here, which landlocked Midwesterners like us can really appreciate.  I really enjoy hearing Gwen say how much she enjoys crossing the ocean.

J is for Jesus.  Ava asked her mom earlier today, "Do you understand the hardships I'm going through?" The answer is obviously no, but it didn't feel right for a daughter to so easily dispatch her mother with a single question.  So I quickly stepped in and said, "Ava, you are facing the most difficult trials one could ever physically go through.  But you have put your faith in Jesus as early as anyone possibly could.  This means you will never have to endure spiritual hardships that many may have to face day in and day out.  Jesus promises you eternal life.  Jesus gives you inner peace.  All your sins are forgiven.  We will all be together forever.  You don't need to suffer doubt over any of these spiritual concerns.  I was young like you when I believed in Him.  But you were even younger and have enjoyed spiritual peace your entire life.  Yes, your body is going through the worst of difficulties.  But you will never have to experience spiritual suffering."  Right after that conversation, she took a nice long nap.  The medications may also have contributed to that, but Jesus deserves all the credit.

K is for Keys.  Since stepping foot in Seattle, we never had to worry about where to live or how to get around.  Uncle Sam gave us his keys to his house in Kent to help us get settled.  Jenny and Eugene gave us their Honda Pilot keys and we were able to make those daily commutes.  Brian gave us his keys to his apartment to help my in-laws get settled.  My cousin Jeff and Rebecca gave us their Grand Cherokee keys so that if my in-laws needed to go out, we would have instant access to transportation as opposed to the 45-min shuttle circuit.  Rob and Kerri gave us their keys to stay in their ocean side apartment near the clinic once Ava gets out.  Pastor Dan and Lydia gave us their Sedona keys, which will make transportation for our upcoming third child quick and easy.  We're thankful for these abundantly generous Key Holders.

L is for Lanyards.  We get parent ID cards to hang around our necks that give us access to the hospital one week at a time.  Esther and I can't count how many times we've left our lanyards either in the hospital room or at the apartment.  So security keeps giving us new ones, and now old ones have started to pile up.  It seems there's no getting around the countless people who are forgetful like we are.  So almost every day we see a person sitting at the entrance sorting through it all and making fresh lanyards available.  These people are a blessing.

M is for Meds.  Graft vs. Host disease in bone marrow transplant is rated on a scale of 1 to 4, where 1 means that the patient requires no treatment for it, and patients have actually died from the severity of a 4.  We recently learned that Ava's GvH disease in her stomach is a 4.  Without the aggressive steroid treatment that she has been on, she would continue to stool diarrhea and blood and her condition would worsen with increasingly unbearable pain.  I am thankful that a medical prescription exists for this fatal and heartbreaking disease, so that a completely different outcome can be achieved.  After tomorrow's last dose, she will begin a six-week period of tapering off of the steroids.  Although it's a harrowing six weeks where symptoms of the disease could return, it's a six weeks we can look forward to because the medicines are buying time for Ava's new immune system to cooperate with her body.

N is for Nits.  Day Zero, which was transplant day, was coupled with a phenomenally absurd turn of events in which some members of our family were found to be infected with lice.  This scene deserves its own separate post.  Really, outside of our situation with Ava's bone marrow transplant, this would be the filthiest misfortune to come upon us.  But lice cannot affect a person who has no hair, so Ava was in absolutely no danger from lice or their spawn of eggs known as nits.  I am so thankful that a louse's ability to lay eggs and grow are confined to those with good amounts of hair, and that they can't jump or fly.

O is for Overcast.  This is how the weather is over here.  It's a reality that I've come to accept, and I'm thankful because for quite a long time I thought our friends from Seattle were playing a big joke on us by bemoaning the weather during the winter season - in order to drive people like us away.  It was to keep Midwesterners and others from moving here and taking up precious jobs and homes.  But no, we've been here long enough to see that it truly is cloudy and rainy almost every day.  It certainly doesn't bother me, since we're missing out on Chicago's bitter cold.  But it feels good to know that people are speaking truth to us and not trying to play us.

P is for Patty.  Esther and especially I often lack the words or what it takes to connect our experiences with our friends and loved ones in the way we truly want to.  I can't explain how Patty manages to do this for us with a husband and three children to care for.  But I do know that it has to do with how she walks with the Lord in her love for us and other members of our church.  Through countless milestones in Ava's life, Patty has baked allergy free cakes and cookies for her.  It is the one thing Ava asks for almost every day, ever since Patty mailed over the ingredients and recipe.  But Ava knows that we couldn't make it like the original, so we've had Hannah bake them and store them before her trip to India.  In addition to creating and updating this blog, Patty has coordinated so much of the care we have received friends everywhere, and indeed we have been blessed and deeply touched by each of you beyond our ability to account for.  Most importantly, she and Esther have treated our journey like the marathon that it is by speaking often on a nightly basis about Ava, the ups and downs, even the mail that keeps piling up at our house.  We don't deserve such awesome people in our lives.

Q is for Quinoa.  I keep saying it over and over again: it has eight times the protein as a couple eggs.  Seattle Children's Hospital makes quinoa for Ava and whatever else she wants (or should I say needs, because this girl does not like quinoa)!

R is for Ronald McDonald House.  We've been able to live within two blocks of the hospital as comfortably as one could imagine due to the thoughtfulness, generosity, and spirit of all the staff and volunteers here.  This charity goes far out of its way to serve children and their families with both the provision and the environment that encourages healing and progress.  We continue to be blown away by how all this is made possible around the clock in the vicinity of every major children's hospital in the world.

S is for Starbucks.  There's a 24-hour Starbucks seven floors below Ava's hospital room.  Refills on the coffee are fifty-five cents.  As soon as I try to do the math, the result is always something happy.

T is for Tully's.  Speaking of coffee, this is a coffee shop that got me the Aeropress ($30).  I happen to ask whether they knew about it, and although the store didn't have any at the time, they arranged for their Bellevue location to send one over.  In just a couple days, I began making my own espresso and I can't wait to go home and make my buddy Anson the best light-water Americano with vanilla that he's ever had.

U is for umbrellas.  No one walks around with an umbrella here.  They just let the moderate rain to fall on them.  So when it rains, for example at the University Village, there are free umbrellas to pick up and return at every shop corner!  Courtesy umbrellas for tourists and visitors!

V is for Varlamos.  This pizzeria makes great gyro sandwiches, and gives 25% off for those staying at the Children's Hospital.  We've gone many times.

W is for Water.  Seattle tap is exceptionally clean and trustworthy drinking water.  Ava drinks it along with all the immunocompromised children.  Its quality cannot be overstated.  It's a shame I drink more coffee than Seattle tap water.

X is for Xylitol.  I bought Ice Chips Candy two weeks ago that are sweetened with Xylitol.  Sometimes there's just no time for anything else when the doctors come rounding.

Y is for You.  Thank you, and Happy New Year!!

Z is for Zzz.  With all this great coffee, sometimes I'm not able to.  But whenever I do, it's just as delicious.