Friday, January 2, 2015

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.


Anonymous said...

Hi guys, miss you all. So happy, so touched and so pained but ever so comforted that He is our Lord.
Happy New Year ! SK and Jeff.

Anonymous said...

Happy new year! I hope your family has a wonderful year in 2015, all together, all healed. I know it is extremely hard for a father to carry the heavy burden at this special time. However, if you can, please reduce drinking coffee.

Irene Sun said...

Dear Mike and Esther, My heart aches often when I visit this green blog. For some funny reasons, I enjoyed reading this particular post. Having read many acrostic books to my three little men, the completeness and thoroughness of the alphabet brings me some comfort. You and yours are often in our thoughts and prayers.