Thursday, March 31, 2016

Results & Next Steps!

If you haven't already seen the Team Brighter Days Facebook posts from yesterday, Ava's PET scan and biopsy results are in!

This beautiful girl just got the best news! Her results have come in with significant changes for the better! Her MRD went from .34 to .007 and her pet scan has shown resolution of many of the tumors in her body. Although we still have to fight a little longer, we thank GOD for His great mercy and grace. And we thank you for standing with us in prayer and with so much love.




To celebrate the fantastic news of Ava's results, we decided to make a trip to Vancouver. We made an unexpected stop to see the tulips.
It was the most amazing sight.
Isn't that life? Sometimes the most unplanned things in life can produce the most beauty. 



So the plan now is for Ava to get a second round of the same chemo she just received. She will start that round tomorrow, and it will be another 8 days of chemo and then wait and see how it works in her body the following few weeks.


All glory and praise to God for His amazing work up to this point, and we trust Him for even more! We can not comprehend His ways, and they may not be the same as our desires, but we know that He is good either way. Thank you for your continued prayers, and for celebrating this great news with us!




Monday, March 28, 2016

This Week's Schedule

As always, thank you for your faithful support, love and prayers, even with the sparse updates recently. It's been pretty busy for the Lee family in Seattle; family members have been in town, so it's been a full house: full of love, full of quality time, full of memories. They are so thankful for each person who has made the time to visit, as they hold a special place in their hearts. The kids have also been sick (all 3) with respiratory/nasal issues, but thankfully they are all over the hump and continuing to recover.

Esther has tried posting several times, but hasn't been able to finish a post in one sitting. Each day can be so different from the next on this emotional roller coaster of a ride, that yesterday can feel so foreign to today, so it's been hard to finish something she started writing even a day ago. She hopes to post something soon.

In the meantime, this is a busy week for Ava:
Mon: bone marrow biopsy (plus intrathecal chemo as usual to make sure there's no cancer in the CNS system/spine/brain) 
Tue: full body PET scan - to assess Ava's leukemia cutis for any new growths, state of her current/previous growths and to see how well the chemo worked this round.
Wed: appointment with the head oncologist - after they get the biopsy and PET scan results, the doctors will discuss and determine a plan of action for Ava and discuss that with the Lee family this day
Thu: possible admittance to the hospital, should Ava start another round of chemo

Today is day 24 since Ava started her chemo in Seattle. This round of chemo is 29 days, so we are in the last stretch. Ava's numbers have been rebounding/climbing back up. Meaning: her ANC is starting to recover after the chemo wiped it out, and her immune system is rebuilding. This would suggest that the chemo perhaps has done what it will? Now that Ava's blood counts are recovering, they can do the testing she needs this week to assess how well the chemo worked.

Last Wednesday, the doctor was able to make a preliminary assessment that Ava has had a partial response to chemo. Some of the bumps she's had on her head and face were noticeably decreased in size, though they were still visible. However, in the 4 days since that appointment, Esther reports that the numerous bumps that Ava had on her head seem to have disappeared! At least they are not evident to the naked eye or by touch. This is amazing and nothing short of God's miraculous work! We don't know if it is typical to have effects of chemo this late in the cycle, but it will be interesting to see what the results from this week's tests show.

Praise:

  • for the unexpected disappearance of Ava's head lesions! She still has some on her face, but there are so many that have disappeared. We give all glory and praise to God!
  • for the people and local church who have come alongside the Lee family so tangibly and sacrificially, becoming dear friends and an amazing support group. Truly, you have demonstrated the love of God in ways they would never have expected, but so need and appreciate at this time. They give thanks to God for providing this means to strengthen their spirits in the midst of difficulty.
  • for Ava's baptism over the weekend! It was a special and memorable event. Be sure to check out the Facebook page for pictures and a slideshow.
Prayer requests:

  • for smooth and accurate tests this week, for continued healing of illnesses for all the kids
  • for wisdom in the next steps for Ava's care: start a new round of chemo or do another round of the same one? At this point, because Ava's leukemia cutis is still evident, she likely isn't ready for transplant, but we need the Lord's wisdom to know how to proceed in the meantime. The doctors admit that there really isn't a "standard protocol" for Ava's situation. This is unknown territory in the medical world, but we praise God that He knows all and we can trust Him with the uncertainty of life.
  • for God's complete healing of Ava - whether through chemo, transplant or something entirely different
  • for full trust in God's heart and His plans, even if they are different than what we prefer or understand at the time

Thank you so much. Your prayers are truly invaluable. May the Lord bless you for your prayers offered up in secret.

Sunday, March 27, 2016

He is Risen!

Today we celebrate the resurrection of our Lord Jesus Christ! On Good Friday, we remembered His great sacrifice on the cross, that He was crucified, was dead and buried. Only Christ's death and resurrection could atone for our sins.

The Lee family celebrated Ava's baptism yesterday! As a reminder, the Team Brighter Days Facebook page will have brief posts, thoughts, photos or an occasional video. If you haven't bookmarked this page already, you can also find the link under the "Ways to Help" page for easy reference.

Ava was baptized today. It was amazing and moving and filled with love. Our friends worked through the week
and into the night to make it so very special.
Looking out toward the many faces shedding tears of joy over Ava's faith journey, reminded me again
that we are truly not alone.



Romans 6: "We are those who have died to sin; how can we live in it any longer? Or don’t you know that all of us who were baptized into Christ Jesus were baptized into his death? We were therefore buried with him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life.

For if we have been united with him in a death like his, we will certainly also be united with him in a resurrection like his. For we know that our old self was crucified with him so that the body ruled by sin might be done away with, that we should no longer be slaves to sin - because anyone who has died has been set free from sin.

Now if we died with Christ, we believe that we will also live with him. For we know that since Christ was raised from the dead, he cannot die again; death no longer has mastery over him. The death he died, he died to sin once for all; but the life he lives, he lives to God."

Thursday, March 24, 2016

Tea With Kindness

It was a very special time for Ava and I as we enjoyed our first tea party together. The staff at The Georgian Room at The Fairmont Olympic were so wonderful and gave us the gift of hope by allowing us a glance into what our future could possibly hold-just a mama and her daughters meeting for tea. May it be so, oh Lord. And even if not, thank you God for this moment. It was a beautiful one.
‪#‎teafortwo‬ ‪#‎teaandkindness‬ ‪#‎memoriesforalifetime‬



Wednesday, March 16, 2016

With Gratitude

Lately my thoughts drift back to over a year ago when Mike and I were told Ava needed a transplant. It was such an overwhelming thing to process. Not only were we entering an unknown territory of cancer treatment but we had also decided that we wouldn't be pursuing the transplant in our hometown of Chicago. We researched multiple institutions across the country and narrowed it down to three places: Ohio, Minnesota, and Washington.

We piled in our minivan and pretended that we were going on a fun family vacation as we visited two out of the three hospitals. Time was scarce. "She's a ticking time bomb," we were told. So we decided to make memories from these consultation trips because we didn't have the luxury of a separate vacation. The girls did not know that Mike and I were taking notes, sweating bullets, weeping in prayer for the wisdom to choose the right place. They just saw that we were squashed in a car together, laughing, playing, spending time together. Hopefully their memories of that time are only of swimming pools, fun hotel stays, and endless movies in the car. 

The Children's Hospital in Ohio was one of our top choices because of the distance to our home state but we just didn't feel it was the right place. Next, we drove to Minnesota and we were so impressed at all that it had to offer. It seemed like the perfect choice in so many ways. But Mike had already visited Seattle by himself and really appreciated everything about their program, so we had to make a tough choice. Our last night in Minnesota, while sitting in our cousin's home, we drafted a pro/con list together to compare University of Minnesota and Seattle Cancer Care Alliance. 

It looked something like this:
University of Minn:
PROS: a great transplant center, plenty of friends and family that would support us during the intense months ahead, covered by insurance, closer to Chicago, Pippin could come with us, similar weather as Chicago (ie. plenty of sunshine).

CONS: nothing we could immediately thing of.

Seattle Cancer Care Alliance:
PROS: a great transplant program, a handful of family and friends

CONS: not covered by insurance (at the time), rain, no community, practically across the country from Chicago, rain, no Pippin, no place to live, rain.

But something compelled us to forget what the list said and go with the prompting of our hearts. We choose Seattle and never looked back. We called to ask what the costs were for out-of-network services. We were told that the transplant, alone, would cost $999,000. When Mike told me, I laughed at the insanity of it. Then I cried.

It didn't matter; we knew we had to go. So we began to pack our lives into 8 suitcases, 2 for each member of the family. As we packed, we prayed and our friends prayed. That's when the miracles started to happen. For one, we were told that since I recently resigned from my position as a teacher, I had a special window to change my insurance. That is how we were able to secure a company that had Seattle in-network.  

On our flight to Seattle, we bumped into my long time friend who also happened to be on the same flight. Once we landed, he helped us load our very many suitcases onto a cart and find our ride. 

The rest of our story is steeped in one blessing after another.

Never could we have imagined what God had already prepared for us in Seattle. We had people lending us their cars, their homes, their services, food, gift cards, cheer-up services, prayers, outings for Gwen, pampering for me, baby stuff for Jude, friendships for Mike and, most importantly, a community to lean on.

This was a hard post to write. I had it written out in my mind for a while now but to put it on paper was intimidating. You see, I wanted to thank you well. Because you have loved us so well.

We came to Seattle in such a pathetic state of mind and health but God literally breathed life into our broken family with love, in all its forms, from the Body of Christ. The power of this love was so great that it began to course through our blown veins of despair and brought renewed faith, hope, and love.

There are still many of you who we have not met and some of you whom we haven't thanked. We want you to know that we thank you, we honor you and we are privileged to call you friend.

Even now, during our second run in Seattle to help Ava fight this disease, we were met with a chorus of beautiful voices asking how they might serve us. 

And this is why we can wake up each morning with new joy and hope. In the midst of voices that tell us it is likely our child will die, there are louder more loving voices whose prayers rise like incense to the healer of broken hearts, not just broken bodies. This is how we know that God is good even when circumstances are so, so bad. He has given us more than we deserve, more than we ever could imagine or ask for. He gave us you. 

You have read this blog, prayed with tears, sent love in the form of meals, sometimes twice a day. You have timidly written emails that begin with, "Hi, you don't know me and I hope you don't think I'm a stalker but I want you to know that I'm praying for you..." You have written cards, shared our story, taught your children to pray for Ava by name. We still remember the things you lent us, from bikes to diaper changing pads. You asked how you could serve us, how you could pray for us, how you might brighten up our days. You have implored your friends, your pastors, your family to pray for us. You willingly opened up your home to a family of 7 knowing that things would break or get broken in early. You dipped into your accounts to make sure we could keep up with our medical bills. You stopped by the hospital and played in the halls with us. You visited to pray, to talk, to laugh, to cry. From Chicago, you sent birthday messages and cards and presents. You made sure Gwen was not lost and forgotten but loved so well. You lavished us with gifts to distract from the suffering. You emailed Ava faithfully despite your busy season. You drove all the way to Kent to pick up an allergy friendly cake so that Gwen could join us in the birthday celebrations. You cried over time lost as a family, future dreams possibly stolen by death. You had cupcakes delivered to the door so that I could remember that it was okay to celebrate life even during this broken time. You brought warm and abundant food to the hospital at the exact time when loneliness had wiggled its way into my heart. You have helped me keep up with my business by taking on my customers. You lent us your family car and made do without it for weeks to make sure we were not with want. Your texts and messages rang through the night to tell me that you did not forget, that you were on your knees for Ava. You visited us when your own child was recovering from transplant. You made sure that when we arrived, even though it was raining and damp, the rooms were lit up with surprises that were dreamt up with love. 

Love. Love. Love. Everywhere we turn, there is love. We know this is God but we also know this is your obedience to His call. It has been a lifeline to us. So even when we can't thank you in person, we cherish your kindness and praise God for His daily reminders that He has not forgotten us. How could we deny His abundant care when we see all you have done? 

And to the three ladies that God has gifted me dear friendship with, despite rumors of the Seattle Freeze, my heart is deeply moved with thankfulness. With laughter and tears, while slurping down ramen noodles, I thank the Lord that He has ministered to my heart by providing such faithful women of God to speak into my life and to walk alongside us during the hardest journey of our lives.

As I sit here with Ava, who is battling high fevers from RSV, we remind each other that God is love. You have been the greatest example of this. 

And as I tell her often, Love will win. It already has.


Jude baby and Ava's duet needs some work

Gwen learning how to skate

Ava's Easter dress courtesy of Auntie KC

Amusing the baby brother

Last day of this round of chemo-Cheers!

Showing off her new obsession: clip on earrings!

The two (self proclaimed) princesses

Spoiled Blessed child

The nicest birthday dinner ever courtesy of Auntie Margaret and Uncle Raymond

These ladies + dessert = one happy birthday girl






Sunday, March 13, 2016

Thankful

(from Esther):
These days have been hard. Sometimes straight up heart breaking. The days are filled with worries of life and death and things in between.

But honestly the one thing we have not had to worry about is how we are going to carry the financial burden of this medical catastrophe. From the gifts, meals, donations, endless generosity, and, today, the 8th paycheck from my side business, we have been covered in some crazy amount of goodness.

Thankful is not a weighty enough word to express how we feel to our friends, our church, my company, and the body of Christ.

Never let my heart forget, oh Lord, your faithful provision and love.
‪#‎seattlefriends‬ ‪#‎chicagofriends‬ ‪#‎allovertheworldfriends‬ ‪#‎rfjourney‬‪#‎allfortheloveofavalee‬

Saturday, March 12, 2016

Chemo

Ava was discharged on Thursday and will finish her round of chemo (outpatient) this weekend. (She is on cyclophophamide, etoposide and bortezamib for those who are curious). The hope is to put Ava in remission in preparation for a second transplant. As you recall, Ava wasn't disease-free before her first transplant. It's possible that the new marrow had some type of immune effect on her residual disease. However, if Ava's extramedullary disease isn't gone before transplant this time around, the transplant will have very little benefit because graft vs leukemia effect doesn't really work well on disease outside of the bone marrow. Keep in mind that even without disease before transplant, the overall chances of relapse are high with leukemia cutis.

One "positive" thing about the tumors on her skin/body is that they are visible, so we will hopefully see them shrinking in size with the chemo.

This round of chemo has been a bit hard on Ava, both physically and emotionally. She's had some pretty bad nausea, but thankfully, she got IV Zofran which really helped. Other side effects of the chemo include hair loss (not sure if Ava is prepared for this) as well as low blood counts all around. Ava may need transfusions in the near future as her counts are anticipated to drop. This is also when it is very important to avoid germs as she won't have the ability to fight infections. Emotionally, Ava is not like her usual self and finds any new pains/discomfort unsettling. She was quite relieved when the dentist confirmed that her oral pain was due to a new tooth growing in and not something else. With the immunosuppression, Ava's cold sores started flaring up again, but thankfully it seems to be controlled with Acyclovir. If it flares up again, Ava will need to be admitted, as any infections can be life-threatening with no immune system.

In the midst of these things, God's hand has still been evident.

Praises:
  • Though initially strangers, some local sisters in Christ have been a HUGE blessing in providing emotional and tangible support. The prayer support has been a lifeline for Esther, and all the texts, checking in, and care for Gwen and Jude has given her a hands-on support when she anticipated loneliness and isolation away from home. Words cannot express the appreciation that fills their hearts. 
  • The coordination of meals and provision of gifts has been AMAZING! The Lee family is so thankful for all the packages and food they have received, and they feel blessed like crazy. Every need seems to be taken care of even before they anticipated it. They recognize this outpouring of grace and love to be from the hand of God. Thank YOU for being His hands and feet of such love! So many strangers who have given a cup of refreshing water to weary souls. Your gift of love does not go unnoticed by the Lee family nor by the Lord. May He bless each one of you 10-fold for your giving. 
  • Praise God for good days like today, where the family can live in a way that feels "normal." It's a welcome oasis in a sea of uncertainty and many "bad" days. 
  • We celebrate that even while Ava's body is trying to fight the cancer within, she continues to grow, lose teeth and experience the pain of normal development. We look and pray for even more of this type of growing in days, months, years to come. 
  • Praise God that Ava's herpeticum (cold sores all over her body) were controlled by Acyclovir and that she can be out of the hospital. 
Prayer requests:
  • Ava's herpeticum will remain at bay and not flare up (nor any other viruses like CMV, for that matter) 
  • Ava will reach remission prior to transplant. (Really, that God would heal her in any way He chooses). 
  • God would grant peace, comfort and strength in Ava's inner spirit as she experiences all that is going on in her body, that there will be no place for fear or anxiety. 
  • God would grant this same peace to the whole Lee family, adults and children alike. 
  • Regardless of what lies ahead, that they will keep their eyes fixed on Jesus, the author and perfecter of their faith; that they may "hold unswervingly to the hope we profess, for He who promised is faithful" (Hebrews 10:23) 
Thank you so much for your steadfast support and prayers.

Tuesday, March 8, 2016

Team Brighter Days

Going forward, Esther will share thoughts/photos/videos throughout the day on the "Team Brighter Days" Facebook page here:
https://www.facebook.com/teamavabright

You do not need a Facebook account in order to access the page. (However, you might need one in order to comment). This blog will definitely have regular updates still; it's just much easier for Esther to post photos, videos and quick thoughts on Facebook, especially when she's traveling/limited to her phone. So if you are interested in following those snippets, please join us over on Team Brighter Days. Please let us know if you have any issues accessing the page. Thank you so much for your faithful support!

Monday, March 7, 2016

Gwen

In the still of the night, when I thought she had already drifted off to sleep, Gwen's voice whispered into the quietness.

"I miss Ava."

Oh, Gwen. Even in the frenzy, we must not forget that you are hurting too. We are not always with you but you are immensely loved and cherished. Praying for my sweet Gwen to know peace and joy and security in this season.

Sunday, March 6, 2016

Facebook Catch Up

Thank you for faithful support and vigilant prayer.
Just a note, comments on the blog will be moderated going forth, so there may be a delay from when you submit a comment and when it actually posts. So don't worry if you don't see your comment right away. I'll do my best to minimize the delay; thanks for your patience!

In the meantime, here are some Facebook posts from Esther. I'll also try to keep them updated closer to real time as I am able. Thanks so much for your prayers!

Saturday, 3/5:
Waiting and praying for Ava from this room. I hate holding her while she falls asleep to anesthesia because it is such a jarring thing to experience. I feel like I am living the horrible nightmare of having to watch her die. The only consolation as I kiss her cheeks and wipe away her tears as she says goodbye and drifts off to sleep is knowing that she will wake up again after surgery. But, oh, my heart blisters and tears to know that she may not wake up one day. God, make still my heart and give Ava peace.




Ava lost two teeth during her line placement surgery. She woke up to her front teeth missing. She was so upset and disoriented from her anesthesia that she asked me to tape them back into her mouth.
‪#‎thisgirl‬ ‪#‎alliwantismytwofrontteeth‬
(There's a video that goes with this; I will post if I am able to).

The joy on her face while talking to her grandma is priceless.



Sunday, 3/6:
Started day one of chemo yesterday. She's in a little pain from the chloromas in her back but otherwise happy and cheerful. We will most likely be in the hospital for 8 days to receive all the chemo. Then we will wait and pray for several weeks with the hope that this chemo will put her in remission. The chances are low but there still is a chance so we pray and pray with endless tears to see her live and thrive.


Friday, March 4, 2016

Praise Report

Praise Report! Friends, for years I've been praying for Ava to be healed. I bent my head low expecting God to lift us back up to health. That was my idea for His good, pleasing, perfect Will.

I am learning slowly but, painfully, surely that I know nothing of how magnificently perfect His Will truly is. I want to freaking karate kick something from the anger and hurt that this disease has caused. But I am humbled that I know absolutely zero of the workings of God's mind. But I do know that He is good. And I stand amazed at how He answers our prayers. I want to thank Him even when it's all I can do to muster up a whisper of praise.

Today's Praise Report: No chloromas in the brain! And the chloroma that they thought was in the thecal sac is actually next to it! Even though it's pretty bad that there are countless chloromas there, it is good news to hear that it is not in an immediately concerning location. Ava also had a visit from Quest Church's Children's pastor who talked with Ava about her faith and her desire to be baptized. Ava wants to make the decision to show that she knows and loves Jesus and trusts that He loves her so much that He made a way to be with her eternally. She is waiting on the baptism until her grandparents and other family members can gather to be there with her. THANK YOU for your prayers, from the bottom of my mama's heart.

Today's Prayer Request: There seems to be a chloroma that is quickly forming and growing on her rib cage. Every time I see it, my body tenses up as I imagine all the other cancerous cells gathering up every minute to form masses that threaten to disfigure and harm my girl.

Today's procedures consisted of a lumbar puncture and a bone marrow aspirate to see if there are any cancerous cells growing in her marrow and spinal fluid. She also got one dose of chemotherapy. We pray that her marrow and spinal fluid continue to show no progression of disease.

I will shamelessly ask you to continue praying for our girl, Ava.



video
The Lord is My Shepherd

#seattleorbust

First time ice skating ever! They couldn't get enough. I didn't know that you weren't supposed to exercise before a PET scan though...oops.


Ava braving the PET scan

Ava consoling Gwen when she had to get labs drawn to check for any correlation between her allergies and malignancies. 

Listening to Pastor Katey read a bible story and explain baptism.



Thursday, March 3, 2016

MRI

Please pray for Ava. She is getting an MRI done of her brain and thecal sac. We hope that we don't find any chloromas in her brain. We also pray that the tumor in her thecal sac is in an easy location to radiate.

Ava will not be sedated for the MRI because she will need to be sedated tomorrow for a bone marrow biopsy and on Saturday for her line placement. During the PET scan yesterday, Ava had a difficult time laying still due to the pain from the tumors in her neck area. We need her to lay still and to cooperate so that the doctors can have all the information they need to begin treatment. Thank you so much for your prayers.

Also, we had the great privilege of being interviewed for a video showing the wonderful things that Cal's Angels is doing and how you can get involved. The Sutter family is amazing and they have used their pain to fuel their desire to bring joy and memories to cancer families in the Chicagoland area. Go to Cal's Angels to learn more about their story. If you ever are looking for a quality organization to donate to, this is the one. They have been a major blessing and key players in our journey. If you watch all the way through, you will find a sweet surprise at the end!



Update

We met with the doctors today to talk about the results of Ava's scans. We learned that the disease is widespread in the lymph nodes of her head, neck, armpits, groin, and in her chest, thorax, and lungs. The most concerning area is the tumor that is growing in the Thecal sac which threatens to impede her walking and ability to control her bladder. We will be looking to radiate that tumor immediately. 

We don't know how the cancer spread so quickly...it was contained in the marrow but somehow spread in extramedullary sites totally under the radar. We are shocked and grieved and angry and confused. But the doctor told us that we made the best choices we could for her minute by minute. I know the million dollar question for us is "would this have been different if we treated earlier?" He told us that there is a chance we would still be here having this conversation even if we had done chemo right away. Leukemia cutis is really that aggressive and ugly and insidious. There really is no way of knowing what could have been and the hardest thing for Mike and I to do is to forgive ourselves for missing the signs.

Without immediate treatment, we are looking at only one to two more months with Ava. She would die from her major organs being compressed by the leukemia. And I can't believe I am typing this disgusting sentence out.

So we are choosing to treat aggressively with chemo. The doctors will reassess with another PET scan at the end of this chemo cycle. If the disease does not respond, at that point, they said it means that the cancer is terminal and they will likely suggest stopping treatments. We could go down in flames while we treat or quietly hold her hand as the cancer chokes the life from her. It is up to us, they tell us.

For seven years I have made choices for her about what she ate, what she wore, what schools, what shows, what shoes, what activities and each of these choices were made with love to see her thrive. How then can you ask me to choose how she will die? 

We will do it though. We will choose to watch her lose that gorgeous, hard earned hair, in clumps and strands. We will subject her to transfusions, chemo, radiation, neutropenia, side effects, and possibly toxicity, all for the chance that she might live and breathe and grace us with one more day. The statistics of her reaching remission is under 20% and then to stay in remission even with a transplant is under 30%. These are just numbers but they are really messed up numbers. To think that our children can die is so wretched that my heart physically feels like it's tearing.

I spent the majority of last night vomiting up my dinner. I kept throwing up and throwing up as my body rejected this awful season of life. It's like knowing that you are scheduled to drown in 3 weeks and you try to anticipate it, to feel it so that you can prepare. But nothing can get you ready to experience your throat closing up, your lungs to burn, your heart to panic, your nose to sting. And the merciful thing would just be to die and to pass from this temporal pain into eternal glory yet the impossible thing is, we do not die. We just sit in this perpetual pool of sorrow drowning each day with the weight of the pain.

I want to die. There, I said it. I think of Ava passing on to heaven and how glorious it will be but also how sad it will be to send my tiny 7 year old on a journey so far without my hand to hold hers. She's never even been on a sleepover. She has yet to spend a night apart from us. And yet, we may be called to let her travel the expanse of the skies, so far from our reach and our embrace. It seems wrong to let her go. And if she must go, isn't it only right for one of us to go too? At least one parent with each child has been our motto as we journeyed down this stupid cancer path. To think we must break that pact...I want to scream. No. Stop. Please stop this madness, Lord. Please, please make a way. How will we behold her bed, her things, her books, her toys, her bike, her clothes, her bear, her notes, her videos, without wishing for death so that we can hold her, talk to her, have her near? How will we drive back to Seattle without sobbing as our eyes glance back at her empty car seat?

But, oh, to know that the Father weeps with me. To know that He is not aloof and afar but on the floor holding back my hair, one palm on my back as I weep and surrender and scream and fight. This is to know peace. He is at the helm. We will keep Him there. 

After the appointment, we came home to eat dinner and gather our things before heading back to the hospital for admission. Mike and I cherished the few hours knowing that our life is on the cusp of changing so dramatically. It may be the last time for them to play while Ava still has hair and feels healthy. Once admitted, we will begin the difficult chemo regimen that will probably make Ava feel miserable and weak. So it was sweeter than anything to see them run and play and find joy in each other. Ava cried while Mike strapped her in the car seat later that night because I had to stay behind with Jude and Gwen. Ava cupped my cheeks in her little hands and told me, with the saddest eyes, that she did not want to leave me because I was the love of her life.

There is this phrase I say to her in Korean all the time, 끝까지 사랑해. It means, I'll love you to the end. I say it to her often so that she will never doubt that my love will stay for her, it will go with her. In the same way, I will pray until the bitter, bitter end that God would save my girl Ava. And He will. For we know this earth shall pass away and we will meet again one day because God made a way. It is only for that reason we can say, "Oh Death, where is your sting?" For though weeping may tarry through the night, may the Lord, Himself, bring the joy in limitless measure as we abide in Him and trust in His unfailing love.

My prayers have been short and to the point. They have been breathless and strained. They have been screamed and whispered. I find myself, not asking, but demanding that the Lord be good. 

"FATHER, YOU BE GOOD TO US." I have pleaded on countless occasions these past few months. Maybe I am wishing to be struck down but, really, I am just a child asking her good father to be true to His nature. I am on the ground, a teeny thing, wanting His goodness to look a certain way but He is above and beyond and willing to let His goodness flow. If only I would trust that even if it doesn't come the way I expect, it will come.

Please pray for Ava.


Wednesday, March 2, 2016

PET Scan today

Ava is scheduled to have a full body PET scan soon (I think around 10am or 10:30am Seattle time?) Please pray for favorable results! The results will also help determine treatment options/course. Thank you!