Archive for the ‘Background’ Category

So Young’s Last Days
March 7, 2013

Warning: This is a very long post. Don’t read it if  you think that the details of So Young’s death will disturb you. Her passing was peaceful, but each person will respond differently to this kind of information.

I decided to write about So Young’s last days, partly for therapeutic reasons and partly just to get the facts out there in case others on the Internet can benefit from them some day. As a first-time caregiver for a person with a terminal illness, you are often physically isolated (although I was much less so than most people) and are definitely inexperienced, so you don’t know what to expect each day, signs to look for, etc. The hospice people help with this, but you encounter a lot of things you have never seen, and you don’t know quite what to make of them. I found some resources for this on the Internet that were useful and thought I would add another resource to the mix.

This was a particularly dark time, and I’m going to be realistic in my presentation. This blog post isn’t for everyone. I plan to post about brighter things later, such as her memorial service.

By the night of Friday, February 22, So Young was in what is described as a “coma-like sleep.” She didn’t wake up at all until her death five days later. On Friday, even in that state, I fed her a small amount of apple sauce containing her usual medication (steroids, etc.) and a little bit of thickened juice by spoon, because even though she was deeply asleep and we couldn’t wake her up, she was still doing eating motions with her mouth and eventually swallowing. At that point, it was all I knew to do, because her entire regimen had consisted of almost constant sleeping punctuated by eating three times a day. The hospice nurse felt that she had “turned a corner,” so that night I also began giving her the liquid versions of morphine (for pain and to help with breathing) and lorazepam (for anxiety), along with atropine to keep her throat dry, because she had been dealing with a very congested-sounding throat for the last couple of days. The amount of morphine she was on at that point was extremely low, roughly equivalent to taking a single dose of Tylenol.

So Young was on oxygen constantly starting Friday night. It wasn’t a mask but a tube that went up her nose that is called a nasal cannula.

The kids were out of the house by Friday night at various sleep overs, which enabled me to focus on So Young fulltime. I had planned on continuing work part-time on Monday, but when So Young fell asleep, I knew that was no longer a possibility.

On Saturday morning, I tried to feed So Young apple sauce with medicine and thickened juice by spoon again, but she didn’t move her mouth at all or swallow. The solid food just stayed in the front of her mouth. The liquid rolled down her throat, and she coughed and moaned faintly, because it was causing her to choke. I stopped once I saw this happening. I took her axillary temperature (under her arm pit), and she was running a fever, which I knew to be a sign of impending death in terminal patients.

Hospice wasn’t coming on the weekends, but they had a nurse come that weekend because of the seriousness of So Young’s condition. I was really anxious to have the nurse there for a visit. I was distressed. I didn’t know what to do. All I had been doing until then was feeding So Young and changing her, but now it seemed I could not feed her at all.

The nurse arrived around 3 p.m. on Saturday. She was an African lady named Josephine. We had had great nurses and other staff from Capital Caring until then. I worried that she would not be as good (I mean, how lucky could we get?), but she was. She checked So Young’s vitals and gave me a technique for lowering her temperature. She filled two latex gloves with ice, wrapped them in wash cloths, and put them under So Young’s armpits. She placed a cool, wet wash cloth on her forehead. Josephine said that we could use acetaminophen suppositories to lower So Young’s temperature but that this would work better. I felt like she was letting me in on some homegrown fever remedy. I have since been told that it is actually quite a common technique.

Lowering So Young’s temperature was just for her comfort. A high fever was normal in these circumstances. The worst we could expect was a seizure as a result of the fever, something that So Young had never had. I applied Josephine’s technique often in the upcoming days, although I soon found some reusable cold compresses in the refrigerator that were easier to use than the latex glove approach. I think that this technique enabled me to keep So Young’s temperature fairly stable until her death without using medication.

I played dumb and asked Josephine why So Young had a temperature. She said it meant that the end is near. She said that So Young could have as little as 24 to 48 hours or a few days. “It depends on the person,” she said.

Josephine recommended increasing So Young’s morphine dose by .25 ml (up to .5 ml every four hours), since she was still pulling at her sheets every once in a while, which indicated pain or discomfort. Tugging at the sheets and other signs of agitation are also common signs that a person is dying. After I increased the dose, So Young seemed a lot more comfortable and stopped tugging at her sheets.

Before she left, Josephine admonished me not to force feed So Young liquids. It was then that I realized So Young would probably not eat or drink again. This was difficult to take for a couple of days and is still painful to think about, because my natural inclination was to feed and take care of her. However, she was dying, and force feeding her would only cause her to choke. It could actually increase her suffering by, for example, causing aspiration pneumonia.

Josephine visited in the early afternoon on Saturday, and So Young hadn’t urinated since Friday night. Josephine said that they may have to  So Young if she didn’t pee by Sunday morning. She did urinate Sunday morning, but the decision was made later that we would not catheterize So Young at all, since it would be uncomfortable for her and the diapers were catching things fine. So Young would even sleep through the diaper changes, although she moaned faintly because it was an uncomfortable process for her. The last time she urinated was Monday afternoon. Her urine had been tea-colored fairly consistently, which is a sign of organ failure and normal for terminal patients.

I was alone with So Young all day Saturday. The next few days were a nightmare for me emotionally. I felt paralyzed, unable to do anything. I felt like I was starving So Young when every impulse in my being told me to feed her. She was dying naturally, which was her wish. Keeping her on fluids and machines when we knew she would die would keep her in a prolonged coma and was another level of suffering that she did not want to endure. I felt like I was waiting for So Young to die, which indeed I was.

On Sunday morning, I attended church live via a Google Meetup (a video streaming service) for the first time. They sang many songs that So Young enjoyed, including “Amazing Grace,” so I brought the laptop upstairs for So Young to “listen,” even though she was very much unconscious. I was very touched that the church did this. It has been clear throughout this ordeal that they have not only been paying attention to our situation but have been very much beside us.

The girls all started staying at Mom and Dad’s house Sunday night. We did this to avoid various nightmare scenarios that could have occurred should the girls have been in the house when So Young passed away and was taken out of the house. This turned out to be a good decision, because she did indeed pass late at night on a weekday.

Late Sunday night, I called hospice because So Young’s breathing sounded especially congested. They didn’t recommend changing anything medication-wise but said I should elevate her more in the bed.

On Monday, So Young’s breathing still sounded very congested. The hospice nurse John directed me to increase her morphine to .5 ml every two hours. It seemed to help with the congestion. Many non-medical people don’t realize that morphine actually helps with breathing. During the course of the next several days, So Young had several breathing episodes, including labored breathing and one case in which she had apnea and her breathing clearly stopped altogether for a few seconds. Hospice said that these episodes were normal. Our wonderful nurse’s aide Cindy said that I should time the apnea incidents. If So Young stopped breathing for a minute or two, it would mean that she had passed, and I should take her oxygen off, because that can cause the person to appear to be breathing even after they have expired.

The increased dose of morphine meant that I was up every two hours all night long to keep So Young medicated. I didn’t mind doing it at all, but it was exhausting after a while.

On Tuesday, John (the nurse) started coming every day instead of once a week. By now, So Young had lived over three days without fluids. A person typically lives three to five days without fluids but could possibly live as many as ten. John reiterated that she could go anytime, although part of me believed she would live much longer than a typical person, since she was young and strong when she was diagnosed.

The number of visitors increased as So Young’s death approached, sometimes to six or seven a day, all day long. This was a source of some stress for me, because I wanted visitors to be quiet and reverent, since it was clear So Young was dying. Visits before were more about saying “hi” and keeping So Young happy and entertained. Now they were about saying goodbye. Despite my fears, the visitors were a great blessing and didn’t show themselves to be irreverent.

During So Young’s last week, Jin and Grace increased their visits to every day. They had made a pact with So Young to be by her side until the very end, and they were true to their promise. Laurie came by and made handprints in clay of So Young’s hands so that the girls would have them after she died. So Me came by as often as she could. It was very hard for her those last days. I think the fact that she was saying goodbye hit her pretty hard that week.

Jin and Grace

Jin and Grace on a routine visit with So Young a few months before she passed. You can tell So Young is a lot more aware than she was in February. Still, the image embodies how So Young was surrounded by friends until her death.

Several of us talked to So Young on separate occasions that week and told her that it was OK to let go. We told her that we would miss her dearly but that God, the family, and our community of faith would take care of the girls and me. These were hard conversations to have, but we felt like we needed to say it in case she was holding on for us. When she was healthier, So Young had often expressed worry about the girls and I should she pass, so there was good reason to do this.

I felt that I had been saying goodbye to So Young for a long time. My doctor admonished me to continue talking to So Young “every hour or two,” speaking into her ear and telling her that I am here and that I love her. I did this every time I gave her medicine or took her temperature.

Looking back, she may have been waiting to say goodbye to Ann, her friend from Seattle who had accepted Christ through So Young. Ann came on Tuesday and left on Wednesday. She was the last non-family visitor to see So Young alive. So Young had been aware before she entered the coma that Ann was going to visit. Ann spent a lot of time with So Young but also with Mom and me. It was a blessing to hear the peace she has found now that she knows Christ. Things aren’t easy or perfect for her, but she has deep purpose and meaning in her life now.

So Me also came by Wednesday night to spend time with her sister. She told So Young again that she could let go. So Me was So Young’s last visitor.

So Young’s visitors on her last day were Laurie, Jin, Grace, Kenji, Christine, Linda (who brought me Thai food), Sungjin, John, Ann, and So Me. There were many visitors that week, but this particular group has special significance in my mind because they ministered to her on her last day.

At 8 p.m. Wednesday night, So Young’s body temperature was even higher than normal, at 102.4 axillary. I applied ice packs, and when I checked her temperature at 10 p.m., it had gone down to 101.7 axillary. I gave So Young her last dose of medication at around 10 p.m. as well.

Before I went to sleep next to her that night, I noticed that her breathing was labored again. I also noticed that the skin on her face, feet, and knees was mottled. This was another sign of impending death that hospice had been watching for. Her hands and feet were still warm, with the exception of her right foot, which had generally been cooler than the rest of her body for a while anyway. I cracked the window next to my side of the bed, because the room felt muggy to me. I thought that maybe the warmth of the room (usually caused by the oxygen machine) was contributing to her temperature that night.

Part of me said that I should stay awake because of these changes just in case she died, but I second-guessed myself because I had thought the same thing many, many times in the past. I decided to go to sleep instead, since I was heavily sleep-deprived anyway and would see her in two hours.

I specifically made note of the time when I went to sleep: 11:18 p.m. I slept through my midnight alarm and awoke at 1:20 a.m. for some reason. I was very groggy and almost unable to open my eyes. I looked over at So Young. Her mouth was closed, which was strange, because it had hung open since Friday night. I looked at her chest to see if she was breathing. Nothing. I immediately realized she was dead. Still, she was very warm, so I doubted. I could not feel a pulse on her nearest (left) arm, but that didn’t mean a whole lot because I’m not accustomed to taking pulses. I got up and turned on the lights in the room. She was much more mottled than before. Her left arm looked especially pale and mottled. I stared at her for signs of breathing or eye movement behind her eyelids (her eyes were still closed). Again, nothing. I kind of paced beside the bed staring at her.

I was afraid, because I am very unaccustomed to dead people and had mostly seen them depicted in movies. My fear surprised me. I thought I was more rational than that and besides, this was So Young. I was afraid to touch her body to check her heartbeat or pulse again, but eventually I got up my nerve and did it. I was now solidly convinced that she had passed. I removed the oxygen tube from her face.

I cried and prayed and talked to So Young for a little while. She looked so pitiful in the bed. Her expression was peaceful but almost like that of a sad child. I felt so bad for her, that she had suffered so much unto death. Her suffering really hit me at that moment. But I also knew that she was now in heaven. Her position hadn’t changed in days. She was still in a pose of restful sleep with her eyes gently closed.

I took off two of So Young’s bracelets, planning to give them to the girls later. I tried to take off her wedding and engagement rings, which she had kept on throughout her illness and often admired when she was sick, but I could not.

I felt that she must have just stopped breathing while asleep and that her soul had quietly left her body. My mom said later that maybe she had given me one last kiss on the way up to heaven that had woken me up. Perhaps she had passed through the open window and visited her best friend Jin for one last chat, to talk to her in her dreams, happily telling her how much she loved each of her girls, wanting Jin to relay that message to comfort us. (Jin dreamed about So Young talking to her about each girl the night So Young passed.)

I called hospice. I told them that I thought So Young had passed but wasn’t sure. The nurse on the line said that everybody who calls when somebody passes isn’t sure, but the person has always passed. She told me a nurse would be at the house within an hour.

For a moment I considered not calling anyone else. I don’t know why, but my impulse is generally to go it alone. Still, I have learned that going it alone generally doesn’t work out all that well. I thought about how So Young’s death isn’t a private thing. It affects many people. Also, there was no telling what would happen or how I would react. I needed any help I could get. So I called my parents, which was the plan. Dad answered. I couldn’t talk. He said, “I understand, son. I’ll be there right away.”

Dad arrived, and soon the hospice nurse arrived. I walked her upstairs. She said So Young looked beautiful. She checked her heartbeat very carefully for a long time and “pronounced” her. I believe this happened at 2:25 a.m., which is the time of death on her death certificate. The nurse took off So Young’s wedding ring and engagement ring and gave them to me. We went downstairs while she arranged So Young’s body in preparation for the mortuary coming. The hospice nurse called the mortuary.

The mortuary called me and said they would be at the house in two hours. The nurse left. Dad and I sat in the living room, talked, and worked on funeral preparations, which we had already started in recent days. Thankfully, we didn’t have to buy a plot, casket, etc., because my grandfather had already paid for them and Dad had taken care of all of the details months ago. Nevertheless, there was a huge amount of work to do. It was like planning a wedding in less than two days.

A man and woman eventually arrived from the mortuary and took So Young away. Watching them take So Young out of the house was brutal. I had to watch it for some reason.

I took a shower, anticipating that I had a long day ahead of me. Dad and I left for my parents’ house, arriving at maybe 4:30 a.m. The plan was for me to sleep there for an hour or two and tell the girls when they woke up that morning. Mom embraced me when I entered the house. I’m sure she had been concerned and praying for hours, unable to sleep. Somehow I fell asleep for an hour in the basement. I woke up and sat in the living room talking to Mom and Dad for a while, tearfully reflecting on the life that So Young had lived and the events of the night.

It had been the saddest night of my life, but somewhere in a realm we could not see, So Young was restored and happier than she had ever been.

God is Good All the Time!
October 23, 2011

This is So Young’s testimony, which she presented at the Women’s Fall Tea at Ambassador Bible Church yesterday.

We come into the world so full of hope, filled with child-like faith, dreaming up big dreams. The kind that grownups chuckle at, that would make them roll their eyes. And somewhere along the way, we grow up and we forget about our dreams. Somewhere along the way, our hope and faith get strangled out. In a sense, we forget who we are. We forget that we belong. We start believing the devil’s lies. The lie that we’re no good. The lie that we’re not good enough. Let me turn it around now and confess that the “we” in this story is really me.

I have always said that I was born a Christian, because I don’t remember a time I didn’t believe in Jesus. I was raised up in a Christian home. There was my father, a devout Southern Baptist minister, my wonderful mom, two older brothers, So Me my sweet younger sister, and Paul my spoiled baby brother. I was the “monkey in the middle.”  

I grew up in the Church. It was my second home. I grew up on “Jesus loves me, this I know/For the Bible tells me so” and “God is so good.” Without a doubt, I will die (God willing, a long time from now) with those two songs in my heart and on my lips. I grew up hearing my mom and dad singing spiritual songs and hymns at home and went to church every Sunday for more. Sounds like an idyllic life? I don’t want to air out dirty laundry here, so I won’t be  going into details. I’ll just say we were dysfunctional with a capital “D”! Immigrating from Korea was hard for all of us.  I came to the states when I was 1½. Communication was tough because of the cultural and language barriers in our home. Much of my childhood was spent in confusion and misunderstanding, because the world outside my home was so very different. Who am I? Where do I belong? I didn’t understand the critical attitudes of the Korean culture. I faced constant scrutiny over what I looked like, how well I was doing in my schooling, was I going to make my dad proud and become the piano virtuoso he had hoped for? No. Not! Dream on. Much of my early life was spent in confusion. I felt scared. I felt trapped, at times depressed. It was dark, but I still had Jesus, and He was my light. My once innocent dreams turned into desperate longings to escape, to be free!

Since then, so much has happened, good and bad. I got married to James, the love of my life, got pregnant nine months later, and welcomed our firstborn, Shannon, who by the way is turning 13 in a couple of weeks. My mom died of a stroke nine days after Shannon’s first birthday. That was so heartbreaking. I still miss her very much. We bought a house in Woodbridge. We had two more  precious daughters, Lindsay and Audrey. So much has happened, so quickly. Life was just happening, and then it just seemed to come to a screeching halt. I hit a huge bump in the road. My marriage was being tested. James and I started having marital problems. It plunged me into a pool of dark despair. I turned into someone I hardly recognized anymore. I was full of bitterness and rage. I was angry at the world, angry at God, but mostly angry with myself. I thought finding my prince would mean “happily ever after.” I thought it meant I had value. I thought it meant I belonged, that I was finally good enough. I was so naïve and maybe trying to cover up my wounds, my brokenness.

I spent the past six years just trying to survive. I was depressed and on some days it was very bad. I couldn’t see the good things that God had given me. There was little joy and I questioned whether God was good. On the surface I acted like everything was fine, but on the inside I was slowly dying.

I remember asking God, “What difference do you make? I can’t even feel you. Are you even here? If you are I need to hear from you now!” I closed my eyes and prayed and asked God to speak to me: “Please help me make sense of all of this.” At that moment I saw the numbers 2 and 25. OK, what was I supposed to do with that? So I started to do that close-your-eyes-and-flip-through-the-Bible-and-point-to-a-verse-thing. I don’t recommend doing that, but it worked for me this time! My finger fell on this verse: “I will repay you for the years the locusts have eaten.” Can you guess where it’s from? It’s from Joel chapter 2, verse 25.God is so good. I claimed that verse as God’s special promise to me.

Just as a reminder to myself, I bought a plaque at a women’s retreat to hang over my front doorway. It says, “God Keeps His Promises.” So in the midst of a lot of heartache, depression, and counseling, God reached out to remind me that He’s still my refuge and strength, that he is the light in my darkest night. God had been saying what I knew all along that HE makes all the difference in me. It’s in these hard moments, times of loss, times of sorrow, times of affliction, times of devastation, that our faith is put to the test. It’s when the devil wags his dirty little finger in your face for the thousandth time, saying, “Who do you think you are? You’re a nobody. You’re not good enough. No one loves you. You’re all alone. Where’s God now?  Is He even here?”

It was around this time that I rediscovered running, something I had done on and off throughout my life. Before I knew it, I had run my first race — a ten miler — and eventually I ran four consecutive marathons and many other races.

I realize now that God gave me running as a gift to help me cope through those tough times. It’s true that running makes you feel stronger, and the miles and finished races give you a sense of accomplishment (the “bling,” the medal you earn is pretty nice too). But it was more than that for me. Many times while I ran, I felt a deep sense of communion with God, a joy that was much more than a runner’s high. I also found a community of support among other marathoners, an extended group of friends that continues to build me up to this day.

In late September/early October of last year, 2010, I was sitting on my living room floor organizing my coupons. I was questioning what my purpose was in this life. So is this all? I’m just a mom and a wife. Am I just a cook, a cleaner, a limo service, a nurse to bandage up cuts and scrapes? A referee to break up fights? Master underwear folder? Bad attitude! Surely I was made for more than this! I wanted to make a difference for Christ. As a Christian, I knew God made me for his good purpose and plan, but I didn’t know what it was. So there I was, organizing coupons when I realized that they were blurry. I told James that my eyes were acting funny. At one point later on, I almost drove into oncoming traffic. In late October, I almost completed my fifth Marine Corps Marathon, but I had to stop after 18 miles because I couldn’t see and just didn’t feel right.

We suspected my antidepressants were the cause, as blurred vision was listed as a side effect. I slowly weaned off of them. It didn’t help. The neurologist didn’t think it was a “brain thing,” but on November 12, I went in for an MRI as a precaution. Within a couple of hours, it happened: the phone rang. It was the doctor reporting that I had a brain tumor, most likely a glioma. We were in shock. We both cried, and I kept asking the poor doctor over and over again, “Am I gonna die?” Yeah, like he knew. The diagnosis turned my life upside down. The news was unreal. I never thought something like this would happen to me.

The days and weeks following the diagnosis were dark for me, emotionally and physically. James and I cried a lot, thinking about our life together and as a family, and how it might be cut short.  I had to adjust to my vision loss, which became so bad that at a certain point I couldn’t walk very far without stumbling. Then came the treatment, which involved driving hours to and from Baltimore from Woodbridge and having my head strapped to a table while my brain was irradiated. I was constantly taking one medication or another. I couldn’t stay awake or couldn’t sleep. I didn’t want to eat or was voraciously hungry. A few times, I had headaches so painful that I found myself calling out to my mom in agony.

But in the darkness there was light. God did so much to heal my relationship with James during the months after diagnosis. Day by day, He worked to restore what was broken between us. Also, I was completely surrounded with the love of God from my friends and family, like a loving embrace from our heavenly Father. It is impossible to list or describe everything people did for me. An army of people drove me to Johns Hopkins for six weeks, made meals for us several times a week for eight months, took me grocery shopping, bought our kids Christmas presents, sent us cards and care packages, and most importantly, prayed for me and spent time with me to encourage me.

Even my running buddies have pulled together to support me. One of them, a Marine named Jimmy, is running the Marine Corps Marathon for me next Sunday. He’ll be wearing a shirt that has my running nickname “Ruby” on it, so that people will be cheering me on for the whole race: “Go Ruby, go!”

Those are just a few things people have done and continue to do for me and my family. If there is anything I’m convinced of after this experience, it is that God loves me deeply, as unworthy as I have often felt to receive his love.

We’re coming up on a year since my diagnosis. It has been an incredible year.  It has been a rollercoaster ride, but through it all I have never felt more loved. How could it be that this lady who has cried so many tears through her life is now laughing at the days to come?  Hello!? I have a brain tumor. You’d think I’d be rolled up in a ball over in the corner, but through this affliction God has shown his goodness to me and my family. The love and care I have received during this time is a testament to God’s unfailing love and goodness. I want to live each day for him, making each day count.

That day in November was a day of awakening. God used that day to transform my life and to heal my brokenness, to heal my past hurts, my regrets, my family, my heart. He’s my healer. I wouldn’t trade this year for anything. It’s because of HIM, I know who I am. It’s because of HIM I finally know where I belong. It’s because of You, Jesus, that I am more than “good enough.” Thank you for giving me a renewed purpose that extends even beyond this earthly life. I’m so grateful that we have a God who “keeps his promises.” God makes all the difference in the world. He IS the difference. If you have hope in him then you have everything, lacking nothing at all.

I don’t know what God has in store for me. I don’t know what the future holds, but I do know this. I know that He loves me and what He has for me is always  good. I can cling to God and trust He has good for me because I love him. I’m choosing to walk each day in faith, praying for God to heal my brain, praying for a miracle! Until that day, I’ll keep on trusting and serving him. I’m not waiting for my vision to be restored. I’m not waiting for a clean bill of health. The time is now, just as I am. Serving him in the home as a wife, serving him as a mom. What an honor! I’ll joyfully fold the endless loads of laundry, serving him wherever He leads, telling everyone what He has done for me, running this new race He has set before me.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” – Romans 8:28

New FAQs Page
September 7, 2011

From James:

I have added a new Frequently Asked Questions (FAQs) page to the blog. You can access it by clicking “FAQs” above or at this link:

https://mynewmarathon.wordpress.com/faqs/

I created it because a lot of people ask similar questions about So Young, and since we have almost a hundred blog posts by now, some basic information might get lost in the shuffle.

How It Began: Part 5
June 3, 2011

From James:

This is the last in a series of posts describing the events leading up to when this blog began. To read the entire series, see Part 1, Part 2, Part 3, and Part 4 .

After our old college friend advised so strongly against using the brain surgeon we had selected at Georgetown, we were at a complete loss. At that time, there was a sense that we were quickly losing time. We didn’t know the nature of the tumor at all. As far as we knew, So Young had a very aggressive tumor and only months to live. The neurologist had said “the prognosis is not good.” The Georgetown doctor had advised against deliberating too long. Yet we had already lost almost two weeks. As a precaution, I scheduled surgery with both Georgetown surgeons. Georgetown became our last resort if we weren’t able to find a suitable doctor quickly.

I remembered the countless, unsolicited doctor recommendations I had received from friends and acquaintances since November 12 and how I had assiduously ignored them. Frankly, I had been overwhelmed by the number I had received and didn’t know where to start. So I began pouring over the recommendations. Johns Hopkins kept coming up. As I looked in my inbox, I realized that I had a half-dozen specific brain surgeons at Johns Hopkins recommended to me by name. Our college friend had even said that he would go to Johns Hopkins if he could do it over again. Given those recommendations and Hopkins’ reputation, I began working aggressively to get So Young into Hopkins.

I contacted some friends to see if I could get So Young into Hopkins quickly, through the back door. I called our neurologist again, saying that Georgetown didn’t work out. Could he find somebody at Johns Hopkins? I also called Hopkins directly to go through their normal process, in case none of my references panned out. They told me that it could take up to five days for them to review her file and screen her. I told them I could overnight a copy of the MRI CD if they wanted it, and I emphasized some critical facts: mother of three, large brain tumor, only 38 years old. They said they would see what they could do.

Meanwhile, two of my emails to friends received unexpected responses. A pediatric neurosurgeon at Hopkins — a friend of our friends Hong and Christine — had offered to see So Young quickly. Also, Hayong had heard from friends who used to attend our church (Matt and Soogi) that they could refer us to a friend of a friend at Hopkins, Dr. Michael Lim, who happened to be a brain surgeon. I asked the pediatric neurosurgeon to talk to Dr. Lim, and Hayong’s friends also contacted Dr. Lim. Finally, our neurologist said he had contacted Dr. Lim on our behalf, so Dr. Lim would be calling us soon. (This was before we had ever mentioned to our neurologist that our friends knew Dr. Lim.) So essentially I had zeroed in on a single doctor, and I had people bugging him from all angles.

The next morning, I received an unexpected phone call. In a surprising gesture of humility, it was Dr. Lim himself calling me from his cell phone on the way to work. We set up an appointment for the next day, between brain surgeries. Usually, brain surgeons don’t contact new patients directly, and they certainly don’t schedule appointments.

The next day, as we sat outside his office waiting for him to come out of surgery, we noticed that his office number was 123, a number that So Young had assigned some significance to in recent months. We felt that it was a sign.

When Dr. Lim arrived and introduced himself, he said, “I want you to know that a lot of people care about you. You must be loved. Many people have contacted me on your behalf.”

During the consultation, Dr. Lim and his assistant, Tami, put us completely at ease. The doctor’s recommendation, having looked at the MRI, was the same as the previous two doctors: resectioning (partial removal) of the brain tumor, followed by radiation to shrink the tumor. He listed the many risks of the surgery but was confident that it was the right approach. But there was one difference in his approach. He said that he would present So Young’s case before the tumor board, which is a cross-disciplinary group of physicians who meet to review and weigh in on a patient’s case. It was a Friday. The tumor board would meet on Monday.

So Young asked the same pointed question she asked of the Georgetown doctor: “Do you believe in miracles?”

Dr. Lim paused as he thought about his answer. “Yes,” he said, “I believe that there are things that happen in the operating room that we can’t explain and that can only be attributed to God.” (As a side note, the “miracle” question is also featured in the movie Gifted Hands, about a Johns H0pkins neurosurgeon. Ben Carson’s character asks it — and answers it — during his Hopkins interview.)

So Young took it further.

“Will you pray for me?”

“I will,” he said.

Almost as important to So Young was The Running Question. Georgetown had strictly forbidden exercise, along with a host of other things. So Young told Dr. Lim how she had run 18 of 26.2 miles a couple of weeks before in the Marine Corps Marathon. Would he allow her to keep running, even long distances?

“Yes,” he said. “Just don’t do any extremely heavy lifting. We want you to stay in good health. But I don’t recommend you running alone because of your eyesight.”

We left Johns Hopkins that day with a great deal of peace.

On Monday, I received a call from Dr. Lim. The tumor board had decided against resectioning. Instead, Dr. Lim would perform a needle biopsy to take a sample of the tumor to determine its pathology. The type of tumor would to some extent determine our next steps.

This blog began around the time the biopsy was performed. The biopsy determined that the tumor is a Grade 2 astrocytoma, which is a slow-growing tumor that infiltrates brain tissue as it grows and can become fast-growing. The Johns Hopkins physicians recommended against surgery, because the tumor is very deep in her brain and surgery carried too high a risk of stroke and death. This disappointed me, because I always thought that surgery was an option. Radiation became our only choice, and even then Dr. Lim was skeptical that it would shrink the tumor (also a disappointment). The objective had become to stop its growth as soon as possible, not to make it smaller. Chemotherapy was considered but dropped. We are saving it in case the tumor becomes faster growing.

To this day, there is a lot of uncertainty, but we continue to see God’s hand in this situation, as the long and winding path to Johns Hopkins shows. Would So Young be alive today if we had chosen Georgetown? We have been blessed at Hopkins. What more is in store for us there? Maybe God has a miracle in store for So Young. Maybe He put us there to be a blessing to the people we meet, and to give our friends and family a chance to be the hands and feet of Christ, driving So Young to Hopkins every day, caring for us, feeding us.

So we don’t wait in fear, although often we are afraid, often discouraged. We wait in hope.

<< Part 4

How It Began: Part 4
February 20, 2011

From James:

This is the latest in a series of posts describing the events leading up to when this blog began.

“If we keep the tumor in, you will die. If we take it out, you will die.”

It wasn’t the most elegant way to start a consultation, but so began our first meeting with a brain surgeon at Georgetown Hospital.

I have to admit that I was in awe of the guy. I mean, he was a brain surgeon after all. So Young, on the other hand, was horrified.

It was a brutal way to make a point, but the doctor was trying to say that he wanted to surgically remove the tumor but could not remove it all because of its location in the brain. He estimated that he could remove 60%.

“There is a case similar to yours,” he continued. “A patient we treated, a law student here at Georgetown, in fact, had a similar tumor — similar size, similar location. Another doctor here operated on him, removing perhaps 80%. After surgery and radiation, he is practically cured. He is now continuing his studies… With assistance.”

I didn’t want to ask what “with assistance” meant.

The doctor went on to list the risks of the surgery: stroke, paralysis, more vision loss, loss of speech, loss of motor ability, death. So Young became increasingly horrified, focusing a great deal on the “death” side effect. It was clear that some impairments were likely. Death was a slight risk as he described it, no different from most other surgeries.

The doctor walked us over to a computer showing the MRI.

“It is quite large,” he said. “Six centimeters or so.” He went on to qualify it as larger than a golf ball. Perhaps the size of a field hockey ball, which of course we had no familiarity with.

So Young asked the doctor if he believed in miracles. He looked down and shook his head gravely. Later, So Young told me she wished she had said that she believed in miracles and that he would see one this time.

When we left the meeting, So Young was very disturbed, but we decided to move ahead with surgery anyway given the urgency of the situation. We could cancel or reschedule later while we investigated other options. So Young very adamantly wanted to pursue a second opinion. Naive about such things, I did so to humor her, not knowing how differently things would turn out had we not done so. This was the best hospital in the area, after all.

I sought the second opinion from another doctor at Georgetown, based on a tip from a friend who said that the best surgeon there had a “French name,” although she couldn’t remember precisely what it was. I called the doctor with the most French-sounding name I could, not knowing that the doctor she was recommending was really the first one we met with.

This misunderstanding turned out to be a strange kind of blessing, because the second doctor was a brilliant communicator, able to explain everything clearly and put us at ease with the “resectioning” procedure — removing, he said, possibly 80% of the tumor. He was in fact the very surgeon who had operated on the law student.

His nurse, however, was confused that we were seeking a second opinion from Doctor Number 2.  Despite his terrible bedside manner, Doctor Number 1 was the best brain surgeon at Georgetown — “Mr. Brain,” she called him.

Reassured that removing the tumor surgically was the best option for So Young, we felt more peace about Doctor Number 1 and did not cancel surgery with him. A bad communicator but a great brain surgeon. It was God’s will.

A day or so later, I got a call from an old friend from college while I was rushing out of the house to pick the kids up from school. He had a brain tumor a few years ago, surgically removed at Georgetown. He ended up with impairments that seemed to be evidence of amateurish work by his brain surgeon. Who was his brain surgeon at Georgetown? Doctor Number 1.

“Don’t go to Georgetown,” he said. “Stay away from that doctor. In fact, if I were you, I would stay away that hospital altogether.”

I had to end the conversation abruptly. What was I supposed to do with that information?

<< Part 3 | Part 5 >>

How It Began: Part 3
February 4, 2011

From James:

This is the third in a series of posts describing the events leading up to the biopsy, when we began writing this blog.

After the initial diagnosis, the hours and days that followed were intense and emotional. First, there was a deep sense of shock and sadness — a feeling that So Young’s life was being cut short. We cried and prayed a lot. Second, a sense of urgency took over me. I somehow realized that time was of the essence in terms of selecting a neurosurgeon and pursuing the next steps, whatever they might be.

Just after we got off the phone with the neurologist with the news, I immediately called my mom, who I swear rushed over in 10 minutes for what is normally a 20-minute drive. She was there with us during the hardest time, just as she always is.

I also called Pastor Kenji, who I’m sure was dumbfounded but prayed with us over the phone.

Shannon arrived home shortly. It was a strange situation. She had a slumber party scheduled for that night for her twelfth birthday, but obviously the moment was too intense for us, and there was no way we could handle that. We had to cancel it quickly, which meant that we had to tell her about So Young’s condition. She is bright and asked a lot of questions. We tried to keep it vague but could not. I just remember sitting in her room, telling her the best way I could, and then her sitting on the floor and crying. Nothing prepares you for that.

Dad soon came over, too. We had pizza, and Mom and Dad left.

So Young and I cried ourselves to sleep that night and woke up crying the next day. It’s hard to describe the emotional intensity of that time. When you receive a diagnosis like that, it is as if you are already grieving, but of course you don’t really know the outcome. Also, we became very reflective about life, particularly our life together and as a family. We cried a lot about the kids and the potential of them losing their mom. We cried about losing each other.

Underneath it all, when you go through this kind of thing, you get a very heavy sense of the sovereignty of God that we are all subject to. He can allow whatever hardship in our life that He wants, whenever He wants to allow it. We can’t predict or understand it completely. Still, through all of this, we have realized not just his autonomy and power, but also his love for us.

<< Part 2 | Part 4 >>

How It Began: Part 2
January 29, 2011

From James:

This is the second in a series of posts describing the early events surrounding the discovery and diagnosis of So Young’s brain tumor.

We went for the MRI at a local imaging center in Woodbridge on Friday, November 12. So Young wore her Marine Corps Marathon shirt. They allowed me to sit in the room while the MRI was performed. I didn’t bring a book or anything, so I just sat there praying or sleeping, or closing my eyes and pretending to sleep or pray.

They admonished So Young to “keep completely still,” which of course always makes you all the more able to keep completely still.

I remember that as we walked out, the radiologist seemed to be scurrying around more than he was when we got there. They said we would get the results in four days, but then just as we left they said within 24 hours.

Right after the MRI, we went shopping for Shannon’s birthday party, which was scheduled for that night. I remember discussing how four days was a long time to wait for the results. Or did they say 24 hours? Which was it? But it was nothing, so it didn’t matter when they told us. Actually, a longer wait would mean nothing was wrong.

When we arrived home, there was a message on the answering machine.

“Hi, this is Dr. Jonathan Amy, trying to reach So Young Gage. We have the results of your MRI, and I need to discuss them with you.”

There was something surreal about that moment and everything that happened over the next few minutes. We were so afraid and only reacting moment by moment to what was happening to us.

I prayed out loud for So Young before we called, that God would help us no matter what the doctor said. I told So Young to sit down at the dining room table and that we would speak to the doctor together on speakerphone.

“I have the results of your MRI here, and I am afraid it is quite serious.” His voice was earnest yet clinically detached.

“I’m sorry, there is no other way to say it. The MRI revealed that you have a brain tumor. It is on your thalamus. It is a serious situation, and we need to act quickly.”

I remember looking at So Young and the terror in her eyes.

“Am I going to die?”

He told us that most likely it would have to be surgically removed and that only a few neurosurgeons in the area are qualified to do that on tumors in this part of the brain. He recommended Georgetown, UVA, or Johns Hopkins.

Within the hour, Dr. Amy had set up an appointment for us at Georgetown for the following Wednesday, which I promptly moved to Monday morning.

<< Part 1 | Part 3 >>

How It Began: Part 1
January 20, 2011

From James:

It occurs to me that many people reading  this blog aren’t aware of what happened before the biopsy (when this blog began), so I have decided to record it here for those who are interested.

Some of what is written in this particular post may sound very personal, but please be aware that we write with a purpose in mind. We realize that many people are going through personal and emotional difficulties similar to we have gone through. We want you to know that you are not alone.

So Young was having vision problems for at least two months before she was diagnosed with a brain tumor. The problem was that we assumed — and inadvertently convinced our doctor to assume — that it was a side effect of antidepressants and not anything more serious.

We had been having marital problems for over 5 years. We sought help from four counselors during those years, attended support groups, participated in a marriage conference, and received a great deal of help from our wonderful church family. But so many years passed, and justified hurts seemed to take on a new dimension, as if there was something else going on within So Young beyond our history and circumstances. In hindsight, we realize that the mood changes So Young was going through were at least partially a result of the brain tumor, but at that time everyone assumed it was depression. It may have been both.

On her counselor’s recommendation, So Young began (very reluctantly) taking the antidepressant Lexapro, and it made an enormous, positive difference in her life. She was always concerned about the side effects, however, and when her vision started to deteriorate, we soon became convinced that Lexapro was causing it. After an optomatrist and ophthalmologist confirmed that nothing was wrong with So Young’s eyes, her doctor recommended getting off the drug.

So Young’s counselor, Hailey, became our hero. She recognized So Young’s symptoms as being extreme and atypical for Lexapro, so she insisted that So Young’s doctor take action. The doctor conceded by providing a referral to a neurologist.

The neurologist, a very gentle and intelligent man, asked So Young a battery of questions to identify symptoms of a more serious problem with the brain — peripheral vision loss, loss of balance and motor function, etc. — several of which are indicative of brain tumors. So Young exhibited none of these symptoms. But her vision loss was obvious and acute.

“I don’t think it is anything having to do with the brain,” he said. He ordered an MRI as a precaution. “Severe vision loss” was what he wrote on the order. It was the first time I had seen those words associated to what was happening to her.

“Severe?” I thought. That was the doctor’s assessment. It was true that she couldn’t read pretty large letters close up. She wasn’t driving anymore. Also, she appeared to have lost some ability to identify colors. Had we been taking it seriously enough?

We scheduled an MRI for November 12, 2010.

Part 2 >>