e@cyclosporin: Day 23-26 -- Unknowns > Knowns

I would like to report some good news with you first. We just got a call from Ensay's in-home tutor selected by the school district who happens to be one of his teacher from last year. I am PRAYING that this teacher and Ensay will collaborate wonderfully to both catch up on classes as well as boosting up Ensay's confidence. Ensay's platelet counts are sustaining better and that means less platelet transfusions for him! on top of that even when platelet counts go down his body is showing less petechiae and bleedings.  So, even though we had not seen a breakthrough in the root of the problem, we are most grateful for the progress in Ensay's overall condition.  Your prayers are making a huge difference and we thank you.

On a lower note (literally), Ensay's neutrophil count has been decreasing to 500 which leaves him vulnerable to infections just from what's going around in the air.  So, if he runs some fever, then he needs to be hospitalized ASAP.  So far, he's been doing fine, but we are PRAYING for a bubble of protection around him at all times and for his neutrophil counts to increase.

Ensay has been going to school as much as he can, and also attended Sunday worship services for last two weeks.  We are all very thankful to see him fully engaged in daily routines.

Worth repeating our gratitude:  The wonderful support from you with the rides for our children, dropping off delicious food for us to enjoy while relieving from a day filled with hospital visits.  Beyond the physical feeding, your support has been refreshing our souls also.  Thank you!

Reflection on how we have more unknowns than knowns:
While I knew that there are more unknowns than knowns in this world, I always thought we knew enough to carry on with our lives.  However, having gone through this situation with Ensay, I've become a firm believer that what we do know is just a drop in a bucket with respect to what is really out there in this world I live in.  Even one of the most advanced medical centers in the world struggled with this same issue when trying to diagnose Ensay's health condition because there were more unknowns than what they had discovered thus far -- which is still the case right now as we patiently await Ensay's healing.

This definitely was a reality check for me but then as I thought about it some more the fact that I know very little about what is going on today and what will come tomorrow is what really keeps me going.  If I had figured most of it out, then what is the true purpose of living?  It'll be like watching a movie knowing how it ends, or a soccer game knowing which team wins.  The fact that I do not know what is to come gives me the opportunity to attain hope and live by that hope.  Again, it's like the unknown of the game's outcome is what excites the process of watching the game.

One of the daily readings from this week was:  For in hope we have been saved, but hope that is seen is not hope; for who hopes for what he already sees? But if we hope for what we do not see, with perseverance we wait eagerly for it. (Romans 8:24, 25 NASB)

Going back to the game analogy, the source of excitement is not only from the unknown of the outcome but is also from cheering on of your favorite team.  If I did not care of the teams playing, then there is no incentive for me to watch the game in the first place.  So, in addition to having the hope in the unknown future, having a hope in something certain to cheer on is also necessary for me to have a meaning of heading into the future despite the unclarity.  So, as the passage from Romans says, I will with perseverance wait eagerly for God's hope to come alive in my family's situation revealing His glory.

e@cyclosporin: Day 17-22 -- Reverse Psychology of the Blue Frog

Many people have asked me the question, "How's Ensay doing?" and I can tell you how appreciative I am for your great concerns and prayers; enough for you to ask how Ensay is doing.  As much as I wanted to make my response succinct and clear, I end up saying something gray-ish like, "He is doing well and yet the root of the problem has not made any progress."  So you may have wondered, "So, does it mean he is ok or he is not ok?"  He is doing ok when it comes to his body reacting to the medication treatment and transfusions had not caused much allergic reactions, and he has been sleeping well (and his parents, too!).  However he has not been doing ok when it comes to his bone marrow producing enough platelets and red blood cells.

Ensay's spirit's been very positive and at times his great attitude even surprises me (in a good way) and I am very thankful to see that in him.  For example, when he prays, he lifts up another little girl he met at the hospital who is going through chemotherapy.  Some how I feel like God will honor his prayers for that girl a lot more because it came out from his own similar personal encounters.

He has also been attending school classes a few more times and I can see how he is excited to go despite the fact that he needs to catch up on a lot of work and he faces the risks of catching some contagious germs from being in a crowd of people.  We are still waiting for the school district to find him a tutor but with the year-end busyness and identifying the qualified tutor this process has been delayed for two weeks already.

Yesterday, his PICC Line was removed which should be a relief for him to always be careful with his right arm but now he needs to be "poked" every time they do a CBC.

The continuous out-pouring of our friends' support of providing rides to our children, and bringing food from all over the greater Bay Area locations have ministered to our family in deepest ways.  We're the true recipients of the "power of caring community."  It just humbles us tremendously.

Reflection on Reverse Psychology:
As I tell my kids to not "waste" their time on Facebook, they seem to be on it more.  Do you know what I mean, teenager parents?  So, I am thinking that I should try the reverse psychology of telling them to spend as much as they want on Facebook in hopes of lowering their interest by subduing the focus of it.  May be they'll lose interest because it's no longer highlighted.  I haven't tried this yet so I'll tell you how it goes if decide to give it a try.

In Friday's reading in 1 Kings 11:2 -- They were from nations about which the Lord had told the Israelites, "You must not intermarry with them, because they will surely turn your hearts after their gods." Nevertheless, Solomon held fast to them in love. -- I see that King Solomon did exactly what God told him not to do even though later in his life he realized his faults and regretted his wrong choices.  Despite God's warnings he "nevertheless" went after his own desires.  Should God have used reverse psychology on him, I wondered?

Applying this thought to my current circumstance with Ensay, I am wondering if God is applying the reverse psychology on me by putting me into this position where I can naturally doubt His love and grace for me just so that I would turn to Him even stronger "nevertheless" the tendency to pull away from Him.  For those familiar with the Korean folktale of the Blue Frog (청개구리), you know what I mean here and as I never wanted to be the Blue Frog to my parents, I certainly don't want to be one to my Heavenly Father.

e@cyclosporin Day 15-16: Power in the Blood

Thank you for the prayers about Ensay's finishing his school year strong despite the set backs he faced in last two months.  He still needs to visit the hospital twice a week to receive transfusion of platelets and red blood cells because his body (bone marrow) is still not producing them.  Including all the waiting times in between lab tests it can take up to 12 hours in the hospital to receive the transfusions.  The previous test results showed his white blood cells to have dipped down a little so the doctor told us to bring him in if he runs a fever (i.e., due to low immune system, he is susceptible to infections).  I am continuously PRAYING that his bone marrow factory will go into normal operations and for God to put a shield of protection around him against germs so he stays healthy.

Reflection:

The many hours of receiving the transfusion, especially the red blood cells (as seen in the picture included), provide solitary moments to reflect on a lot of things of which the value and the life our blood carries.  We are grateful to all the blood donors because in essence their donated blood is what is sustaining Ensay's life.  As I write this, my mind is still in state of denial but that is our reality.  While we're clinging on to the hope and promises God laid in our hearts about this situation when you see this big boy lying in the hospital bed receiving the blood for many hours at a time because his body cannot produce it on its own, it is unavoidable for us to fall into moments of disbelief in everything we had held on to  because when life and death stares straight at you head on it shakes the whole world upside down (a few times!).

Many years ago when I was helping set up the sound system for a small performance, as I was holding on to the power cable to one of the equipment I asked, "Where's the power?"  To my surprise one of the musicians replied, "The power's in the blood!"  That funny response, however, stuck with me all these years because he was absolutely right.  The power is in the blood because: 1) our body needs the blood and that is why blood is used to signify life in us; and 2) we need the blood of Jesus to have a vibrant spiritual life now in this world and the world to come.  As much as our physical life needs the (red) blood to keep us alive, we also need to have the blood Jesus gave us flowing through our souls in order to keep us alive spiritually.

Yesterday's daily reading was on 2 Thessalonians 2:16 -- Now may our Lord Jesus Christ Himself and God our Father, who has loved us and given us eternal comfort and good hope by grace, comfort and strengthen your hearts in every good work and word.  I underlined "grace" because that is the hinge holding together everything else mentioned in this passage.  Just like the graciousness of the blood donors giving, Ensay is benefiting immensely, the graciousness of God's giving us the lifeline is the key to our having eternal comfort, good hope, and strengths.  Without His grace, there isn't much more to talk about.

The power is indeed in His blood, through His grace.  And that's where we are going to anchor our hope while strengthening our hearts against all the storms come our way.  Thank you all for journeying with us with amazing support.

e@cyclosporin: Day 10-14 -- Leaving an Impression

We are very glad for Ensay's body to have adjusted to the medication he started on and he hadn't encountered any more reactions.  Overall he's been in good spirits and sleeping much better at night times.  He still goes into the clinic regularly each week to do the blood test and transfusions as needed.  To my layman's eyes the lab reports are all over the place and do not clearly see which direction the progress is heading toward but one thing for sure is that things have not declined significantly and so far the doctor shares a positive outlook.  I can confidently say that your prayers have kept the dark clouds at bay, letting His sun (or is it Son) shine right through to us even through these very uncertain period of just (seems to me like aimlessly) waiting.  God desires for us to keep our head up high and to look to Him while there is another force that wants us to clam up into the dark corners; so we're very grateful for your support because they are sustaining us to stand firm in His promises for us.

With only about three weeks left in the school year, Ensay has been concerned about catching up with his school works and even though the school district's been trying hard to identify the tutor we are still waiting.  In the mean time, Ensay was able to attend some of the classes and begun to dig into the classworks and it is really great to see him take that initiative.  Thankfully many of the teachers "love" him and are eager to provide help -- as an example one teacher recruited one of the upperclassman to tutor him.  I PRAY that his motivation to finish strong in the classworks will continue and appropriate helpers will spring forth in no time.  I also PRAY that his kidneys and liver are protected from the strong medication he is on now.

A Funny Story & My Reflection
Just as the anesthesiologist begun the general anesthesia for the second bone marrow biopsy procedure, she begin asking him questions to see when he would fall asleep.  After a few questions of this and that, it came to the question: "Is your mom a good cook?"  We were both in the procedure room listening to this and he was looking at us as the sleeping agent was already at work, he answered along the lines of: "Once in a while when dad shows up to cook, he shows who's the boss."  How odd a response that was, but then, he fell asleep, so an opportunity for clarification has vanished.  NOW, let me just make it clear to everyone that I neither cook much at home nor come anywhere close to Young Joo's cooking skills.  So this is not about feeling good about getting the recognition, but to my surprise, what even gave him a glimpse of such a thinking (ok ok, so he was under the influence; and that's why I call this my "reflection" :-).  The only thing I can think of is the few instances that I did cook for my kids utilizing some of the self-taught culinary skills honed in to be meat-rich, veggie-less, and salt-friendly which must have left him an impression.  (So I wish.)  Isn't it true that we retain those impressionable moments not necessary based on the frequency of happening but because it just takes that one impression to last a life time?

Today's reading from 1 Chronicles 29:11-13 touches on leaving an impressionable moment.  It reads: Yours, Lord, is the greatness and the power and the glory and the majesty and the splendor, for everything in heaven and earth is yours. Yours, Lord, is the kingdom; you are exalted as head over all.  Wealth and honor come from you; you are the ruler of all things. In your hands are strength and power to exalt and give strength to all. Now, our God, we give you thanks, and praise your glorious name.

This is David's prayer after Solomon, his son, takes the throne with all the materials David prepared for him to build God's temple, and the people willingly made lots of offerings as well.  He could have been satisfied with his achievements and to pass on the legacy to his son, but no, he recognized and praised God's greatness and His splendor for everything.  He professes that wealth and honor come from Him and that he would praise God's glorious name.

I would love to know one day, that Young Joo's and my love for God would be recognized by my children based on the impression left deep inside their hearts.

e@cyclosporin: Day 6-9: Power of Memory

Against my will of updating this blog daily, days are packed with many tasks and activities days are slipping by quickly before I could get on this blog.  As you can imagine, this means nothing major has happened so that is a good thing; but it also means accumulation of fatigue has somewhat caught up with us at the same time to keep up with everything.  We are doing fine, but just wanted to give you an idea.

Ensay's found a smooth routine for taking the medication, measuring the blood pressure, flushing the PICC Line, keeping hydrated, and resting as much as he can.  A lot of these are assisted by his head nurse (mom!) with the greatest care.  Ensay is still making three trips to the hospital per week to do the CBC, transfusion, or to see his doctor but on the whole he's had no serious reactions and sleeps without much interruptions.  Appreciate your laser-focused prayers to alleviate him from the nightmares.

So far, it is still premature to seek a clear indication from the blood counts, but using the Olympics analogy, we realize this is a marathon and not a 100m dash so we are trying very hard not to react to each every readings various reports.  This is definitely an aggressive training for us to keep our eyes on Him who is in full control of the situation.  Sad to report that our son is doing a much better job at this than his parents.  (Wait, that's really not sad but happy, isn't it?!  But you know what I mean.)

As for the hemorrhage in his eye, the doctor confirmed it to be diminishing in size, which is a great progress, and it is not in a critical location behind retina to be too concerned.  However, there is a chance that it may leave a permanent blurry spot.  So, I am going PRAY for that hemorrhage to dissipate cleanly and completely.

Good news and a Reflection:  Ensay went to school for the whole day on last Thursday.  We were not sure if he would sustain the whole day but he did fine even though we could see him a bit tired that evening.  I am most grateful for his positive attitude in making the best out of the situations he is in.  That morning when Young Joo dropped him off at school, her eyes swelled up with tears because she was so proud to see him taking the proactive steps forward even after such a set back.  I keep linking back to his younger days and when she told me that, I remembered the first day we dropped him off at the pre-school and watching him bravely walk into the classroom all by himself.  Some of you may relate to that mushy feeling inside as you gaze into such a scene.  Then I realized those precious moments of witnessing his growing into a new phase is what keeps making these memory flashbacks to take place.  It is as if these special moments add another thread into the fabric of family.  Without such memories, heart-to-heart ties may not be strong.  Without such a memory for me, when my wife told me about Thursday morning when she saw Ensay go into school after missing it for more than a week, I am sure I would have been proud of him but would have lacked the depth of my love for him accumulated over the years.  I just saw a new angle to the power of memory and how I need to continue adding more threads to my family's fabric by intentionally facilitating moments noteworthy to store into my memory bank.

From this week's daily reading on Matthew 26:64 --
"You have said so," Jesus replied. "But I say to all of you: From now on you will see the Son of Man sitting at the right hand of the Mighty One and coming on the clouds of heaven." -- was really a quote from the Old Testament's Daniel 7:13 -- "In my vision at night I looked, and there before me was one like a son of man, coming with the clouds of heaven. He approached the Ancient of Days and was led into his presence.  These two period span more than 500 years and to see Daniel's prophecy come true after so many years is a strength to know that our God spans the time space we live in.  His promises will never fail just like this sun in the picture that rises every morning without failure.  This picture is from when our family went to a near by pond to have Easter sunrise worship.  Many things were unknown with Ensay's situation then, so we lifted him up for the power of His resurrection signified by this sunrise to shine on him with a touch of healing in his blood system.

WOW Report -- This is not new, but we're continuously WOWed by the community of friends bringing (quite delicious, I might add) food for us to eat from far places as well.  We're very much touched by all of your loving hearts (and hands).  Email messages of letting us know your are covering us with your prayers are very much strengthening us also.  WOW.

e@cyclosporin: Day 3-5 -- Bumpy Start

I'm not sure how the last two days passed by.  As a result of many factors at play -- Change of environment from the hospital room to home, Starting on Cyclosporin pills, and After effects from ATG treatment -- Ensay had a couple of miserable days and sleepless nights.  He was nauseated with some stomach aches (most likely due to constipation), at times with some headaches.  He was wondering why he was not still at the hospital when he is feeling so bad.  We told him that on Monday he can ask that same question to his doctor and in the mean time we will have to hang in there.  On Monday, the doctor pointed out that these side effects are most likely caused by ATG being active in his body and told him to take Magnesium citrate to relieve his stomach and happy to report it worked explosively well.  Since then he's been feeling much better and after day's rest he resumed the Cyclosporin tonight.

I am also happy report that the doctors are seeing some positive signs from the preliminary test results from Monday.  Please know that your prayers are at work here @ Kimfamily.org!

During the nights when Ensay could not really sleep due to discomforts, Young Joo (mostly) and I were up with him trying to help in any way possible, feeling so helpless because there really wasn't much we could do besides laying our hands on him and praying for the pains to be lifted.  While this was not a pleasant situation it nevertheless reminded of the days when he was a newborn keeping us (again, mostly Young Joo) up and night. The only difference then and now was, his method of communication.  Back then, he just cried and cried in incomprehensible words, but this time he was communicating his pain through his facial expressions and comprehensible words even mixing in his full emotions by crying out, "Help me!" (which he spoke in Korean, "살려주세요!" is more like saying "Save me!") while reaching out to hold my hand....

In today's reading in Psalm 32:3,7 I found these passages:

When I kept silent,
my bones wasted away
through my groaning all day long.
You are my hiding place;
you will protect me from trouble
and surround me with songs of deliverance.

Lord will hide Ensay in His special place protecting his bones from wasting away.  He will surround him with songs of deliverance.  In fact, we are going to have some family praise time starting tomorrow.

e@cyclosporin: Day 2.1 -- Home & Family

Do you know when something so obvious becomes a reality?  I went through that experience today after Ensay and mom came home.  I realized our lovely home (the physical entity) is not complete without all the family members present.  For last eleven days or even with all the support from our community of friends filling in the rides and food duties, things seemed volatile around the home.  Merely hours after they came home, however, just having all of us here provided a sense of stability and wholesomeness to this place we call our home.

Much like the aplastic anemia where the imbalance in the body prohibits from generating the right blood cells, home without the whole family was unable to produce the right chemistry to sustain the balance.  In the busyness of taking care of many things during last eleven days I did not realize this until all of us were united again at this home.  Just like how our home restored its vibrancy, I continue to PRAY that Ensay's body will very soon normalize to produce healthy blood cells by striking the right balance.

The medication's side effects are much under control in Day Two, but he still cannot avoid the unpleasant feelings from taking the pills.  Overall, though, he continues to carry his positive attitude, soaking up the discomforts very well.  It is so good to have him back at home (especially on the Children's Day, in Korea which is May 5th of every year).

God encouraged me to carry on through today's reading from 2 Samuel 10:12 -- Be strong, and let us fight bravely for our people and the cities of our God. The Lord will do what is good in his sight."  This is where David's army were up against a very strong opponent and the two generals are making a pact with each other.  Instead of focusing on "winning" the battle they focused on serving their people while trusting the outcome to God's leadership.  Our family is going to fight bravely while trusting God to do what is good in His sight.

Reflection:

Isn't this a cute picture my girl took of the mother duck, who visited our home, feeding (or kissing) her duckling?  Just a day after this duckling hatched it knows how to stay under its mom's care and protection.  I don't know what it is, but I am just awed by how all this is designed to work so well in this wild nature.  God, You sure did a fabulous job! :-)

e@cyclosporin: Day 2.0 -- Welcome Home

In short, Ensay came home today!

Going forward, he will be taking Cyclosporin from home and make frequent visits to the clinic for testing.

Today, as he took the Cyclosporin pills in two parts, he seems to be tolerating a lot better and actually ate a good amount of food when we got home.  It's so good to have him here especially in a significantly better mood than yesterday.  Again, thank you all for lifting him up in prayers to target the problematic areas which improved.

For now, this happy and grateful dad wanted to share this great news with you.  :-)

e@cyclosporin: Day 1.1 -- Strong Grip

When I finally got away from my office to visit Ensay around 8pm, my heart was very heavy to see him struggle so much with the side effects from starting on Cyclosporin.  I could see his quiet inner strength working over time to manage the huge discomfort inside of him -- nauseating plus stomach pains.  We got to chat a little and watched LA Lakers struggling along in one of their playoff games.  His second dose of Cyclosporin arrived and just watching him swallow those ginormous pills made my stomach to react a little!

After watching some more basketball and food channel (really mostly observing how he is coping with his discomforts) he vomited which relieved some of his discomforts but I could still sense turmoil inside.  As I was sitting next to him he reached out and held my hand and so I grabbed his in return with a strong grip then I also brought my other hand over to grab his hand together to let him know that I was there with him.  After a few minutes he, in almost a whispering voice, said to me, "Go home."  He was looking out for me because his sisters were at home by themselves.  If that weren't the case, I would have sat next to him all night holding on to his hand ... praying for him and letting him know how much I love him as my proud son; but I had to peel myself out of that room back home.

As I was holding his hand and praying in the darkened room, my mind flashed back about 10 years when my little boy's soft and cushiony hand would hold onto mine with a strong grip especially when he is scared.  I would hold his hand tightly back to give him assurance that I am with him and won't leave him.  This is a privilege God gave to all fathers and the sensation of that bonding between father and child is one of a kind in this universe.  It has been a few years, though, since we had such a moment as my son grew into a young man, taller and stronger than me.  However, tonight, God allowed us to re-connect in a very special way despite the miserable condition Ensay had to fight through.  I am so grateful for His being with us and assuring us that He is in full control with a mighty grip on us in the current situation.  In fact, this is the essence of His love displayed on the Cross for us symbolizing that His hand is stretched out to us so that when we reach out and grab His hand He won't let us go no matter what happens.

e@cyclosporin: Day 1.0

Ensay felt nauseated after taking the first dose this morning.  He is sleeping now but I am going to PRAY that he won't have much reactions to this new medication.  I look forward to seeing him laster this evening to cheer him up.

e@rest: Day of Rest

Today was a good day of rest without any IV or medication for Ensay, he looked rested with a lifted level of energy.  It was good to see him that way.

Tomorrow, the next phase of the treatment called Cyclosporin will begin while starting today the platelet transfusion was reduced.  The doctors will be monitoring closely how Ensay's bone marrow will increase production of "good" blood cells.

After visiting Ensay for a few hours tonight, I also feel rested just seeing this good-looking young man in good spirits.

In today's reading, the writer in Psalm 2:7-8 wrote:

"I will surely tell of the decree of the LORD:
He said to Me, 'You are My Son,
Today I have begotten You.
'Ask of Me, and I will surely give the nations as Your inheritance,
And the very ends of the earth as Your possession.

These are words for me and my family also, that the same God who considers us as His own to give the nations as inheritance and the very ends of the earth as our possession will grant the same to Ensay because we are asking of Him now.  We also trust that the healing in Ensay's blood system will be a part of this process.

e@atg: Day Five and Done

ATG treatment has been completed this afternoon!  We just passed one of the major milestones.  The doctor would like for Ensay to stay until the weekend in order for them to monitor the progress.  Cyclosporin (medication pill) treatment will start now which will be going on for an extended period.  This medication can affect his kidneys, liver, and raise his blood pressure so I will be PRAYING specifically for protection of his kidneys, liver and other organs during this phase of his treatment and also for his doctors to examine and analyze the results with wisdom and clear insights to further shepherd the treatment process.

Ensay walked around the building this evening to get some fresh air and to give his legs some exercise.  It was great to see him doing that.

From today's reading:  Matthew 19:26 -- And looking at them Jesus said to them, "With people this is impossible, but with God all things are possible."

P.S.  Tomorrow (5/3/12) is the National Day of Prayer.

e@atg: Day Four at a Good Pace

It was an uneventful day and that is a good thing with everything going on.  The infusion at a slightly higher rate completed without any complications and Ensay is feeling well although a bit too quiet after we requested you to hold visitations. :-)  I cannot imagine what may be going through his mind and body but he is holding up very well like a real man.  (Did I tell you how proud I am of him, yet?)

I am PRAYING that Ensay's body will be protected while ATG is at work (i.e., lowering his immune system).  His mind will be filled with God's comforting Spirit who will commune with him throughout this process.

WOW Report -- I just realized that prayers for Ensay are coming from around the globe.  From the top of my head these are the locations (please comment here if I missed you):  Africa, Germany, Indonnesia, Japan, Korea, and (many of the) United States.  This means Ensay is being covered by prayers around the clock.  WOW.