Archive for June, 2011

Kim and Mikael
June 28, 2011

From James:

We took a long weekend and stayed at Kim and Mikael’s place in Norfolk. Kim has been So Young’s best friend since sixth grade. Mikael had it right when he said they have the “same spirit.” There is something about the two of them that makes them more like close sisters than friends. They are known for their mutual goofiness and long phone conversations where they spend an hour just trying to get off the phone but aways having something else to say.

Kim has been there during the most difficult times. I remember her comforting So Young when she was having an unbelievable headache caused by intracranial pressure the day before the biopsy in November. So Young was in great pain and distraught. We were at the hotel in Baltimore. Kim called us from Norfolk and listened, shared scripture with So Young, and prayed for her. I don’t think I’ll forget yesterday, either, when they stood in the kitchen alone, just the two of them, holding hands and praying for each other before we left for home.  Who can measure the value of such a deep, spiritual connection with another human being? Can you imagine having that with a friend, or even your spouse? What a gift.

Another gift was waiting for us when we arrived back in Northern Virginia. Dad and Mike had finished the fence in the backyard after several Saturdays and many hours of hard labor. The thing is so solid and well-engineered that it will likely outlast our townhouse.

In other news, we have a date for the next MRI: July 25. We wait in hopeful anticipation.

So many are praying for So Young. Please continue to do so. But there are many other needs that we know of, more so it would seem that we are aware of now that we are going through this crisis. One family you can pray for is that of Chris Johnson, a South Carolina music ministry leader whose small daughter Naomi drowned but has miraculously survived and is recovering very well: http://www.chrisjohnson.tv. I recommend reading his blog, which is a real testament of faith during great trials.

OK. Enough of the heavy stuff. Some pictures from our trip…

Audrey  Catching Waves

Audrey Boogie Boarding — A Lot Braver and More Capable than Expected of a Typical 6-year-old

Group Shot

At the Sanctus Real/Toby Mac Concert at Busch Gardens, an Amazing Show

Williamsburg

The Girls at Colonial Williamsburg, Where We Occasionally Visit to Eat Caramel Apples under the Guise of Reveling in Our Nation’s History

Quick Update about “Lit Up” MRI
June 20, 2011

From James:

So Young and I talked to Dr. Kristin Redmond, our radiation oncologist, this afternoon to find out the recommendation of the tumor board. As you may recall from a recent post, the latest MRI showed an area of the tumor that is “lit up” (i.e., whiter in the image than the rest of the tumor). This could indicate that part of the tumor is faster growing. It could also be an indication that the radiation is doing its work to fight the tumor.

Rather than another needle biopsy, the tumor board has chosen the middle road and is recommending an MRI a month from now, the exact date TBD. Previously, the follow-up was scheduled for three months from now.  If the lit up area has grown, it is possible that part of the tumor is fast growing, and Johns Hopkins will determine the next steps — possibly a biopsy. If it has not grown, the lit up area is most likely an indication of dying tumor cells, which would be good news.

This is a particularly stressful time. Tense periods of waiting are typical for people with serious health issues. We are praying for peace and the right perspective. We appreciate all your prayers. It seems like we meet people all the time who are praying for us, often people we don’t know. We met someone on Sunday, and So Young met still another person at VBS today. These encounters, along with the many tangible and intangible ways in which so many of you have reached out to us, are a great blessing for which we thank God every day.

Dear Dad
June 19, 2011

From James:

I’ve decided to honor my dad with this post. I guess I could have written him a private letter, but I feel like others should get a chance to hear about him, too. If you read this and feel compelled, feel free to respond with a post — long or short — about your own dad, to honor him.

Dear Dad,

There are so many things about you that amaze me, so much you have accomplished in this life. B-52 pilot. Air Force colonel. Soccer champion. Supreme negotiator and salesman. Georgetown MBA. Incredible work ethic. Exemplary provider. Supreme handyman and woodworker. And how did you land Mom? I mean, you’re a charming guy and all, but she was way out of your league…

More than that though, I want you to know that I admire your character, the man you are inside. I remember hearing you do the congregational prayer today. (I would say, “Nice prayer,” by the way, but I don’t want that to be your only reward, if you know what I mean, so I’ll refrain.) I thought (and I was praying, too, mind you), “My dad is such a tough guy. But he is a man of deep emotions. How can he be both?”

Your love for me and my family is so evident. I know it hasn’t always been easy for you to express that love to me. I’ve been really proud that you’ve been able to say “I love you” since I became an adult, and we even do those sort of  one-armed “man hugs” every once in a while. You initiated all of that, by the way. I didn’t. But you didn’t have to do that to show it. I can tell.

I remember how you just so desperately wanted to help when the world started crashing down around us seven months ago. You were ready to do anything, but the situation didn’t readily lend itself to what you are best at. Soon, you took on our house projects with gusto, combining your repair and maintenance know-how with your financial means to help us. So Young can see so much better with the new lights on the main level because of what you did. We were just talking about that last night. Also, the back fence is well on its way. I could never have done either without you, and those are just two examples among many. You are an amazing servant and giver/provider.

There is also the love you have for Mom. Forty years of marriage to your “bride,” as you proudly call Mom. That is such a model for all of us to follow. It shows deep character — a commitment to integrity and fidelity that is so rare today. So Young and I often remark to each other that we can tell you two really love each other. Your commitment is a rock, and it will be for generations to come. I want to have that fierce, unwavering devotion to my bride as well.

You may have never noticed it, but you are also a great encourager to me and my family. I find it fascinating that a man who is so tough on the outside can also bolster others up so effortlessly. I think of how you have encouraged So Young during the toughest times. For example, when So Young was in the emergency room after the half marathon last month, you just sort of materialized at the hospital within minutes of my phone call. You were there with strong words of encouragement for So Young and all of us, like some kind of an Air Force colonel angel or something. It seems like a small thing, but it is emblematic of so much. We won’t soon forget it and all the ways you lift us up.

Dad, I really want to honor you. I hope this takes some steps in that direction. As you prayed, we dads aren’t always perfect. As a father myself, I know exactly what you mean, and I face that every day. But you have done so well.

I love you, Dad.

Love,

James

Follow-up MRI and Appointment: Hopeful and Afraid
June 13, 2011

From James:

We received inconclusive news from the doctor about So Young’s brain tumor today. Part of the tumor might have become fast growing. Then again, that same part of the tumor might be succumbing to the radiation treatment. Dr. Redmond believes it is probably the latter, but there is enough uncertainty that she is presenting So Young’s case before Johns Hopkins’s tumor board again next Monday. If they believe it might be fast-growing, they will probably recommend another needle biopsy to verify, but Dr. Redmond believes that they will agree with her assessment that it probably isn’t fast-growing.

(If you aren’t interested in the medical details, skip the next paragraph.)

Brain tumor MRIs are usually performed “with contrast,” meaning with an injected agent that can cause part or all of a tumor to appear more white in the image. My understanding is that the whiter all or part of a brain tumor looks in the image, the more likely that part of the tumor is suffused with many blood vessels and therefore faster growing. However, radiation itself can also cause parts of an otherwise slow-growing tumor to appear whiter, even though the cells themselves are still slow-growing. Three months ago, Dr. Redmond saw a small spot like this on So Young’s tumor and said it was not a cause for concern. But now the spot is perhaps twice as big and much whiter. She said this could mean that something is going on within the tumor vascularly as it deteriorates, but it could also indicate faster-growing cells. She said it was rare for tumors to become fast-growing “this soon.” Still, she wants a larger panel of experts (the tumor board) to offer their opinion as well.

So Young was very upset when she heard this news. She despaired that she might lose her life, and understandably so. I prayed for her and encouraged her not to assume the worst, since the worst probably isn’t true anyway, and we can’t know the future. Her point of view has improved considerably throughout the day, largely because of the prayers and encouragement of friends and family. She feels confident now that we will see a good outcome.

We have many earthly reasons to be hopeful. Her fatigue has improved. Her appetite is better. Her eyesight hasn’t deteriorated more. All of that is true. But as Kenji has said, these are ordinary hopes. We have a more extraordinary hope, no matter what happens, and that is our hope in Christ. He is very familiar with what So Young is going through. He shared our sufferings on this earth, even unto death. Because of Christ, So Young is confident of a very long life as well, here or with him — it doesn’t matter to her.

Remember early on, when I wrote that driving to and from Johns Hopkins was like going to church? We would sing hymns all along the way. Today it was something different. Maybe a different kind of church? Lacrae was blasting in the car, the bass pumping. Imagine a nerdy white guy like me and a Korean lady “bustin’ rhymes” as they say (or do they say that?) the length of 95. At first So Young cried on the way back, but pretty soon her demeanor changed. She was ready to fight.

A Prayer
June 7, 2011

From So Young:

Life is hard, but God is good all of the time! Still praying for healing. I come before him every day knowing that what I need is found in him alone. My healing comes from his hand and the healing word spoken over me…

God, I wait patiently with great expectation of what You will do for me. It is not too hard for You to shrink this brain tumor gone and restore my vision. I look to You with the faith You’ve given me, looking forward to boasting the rest of my life of what You have done and continue to offer me.

I have asked You, “I know your love for me Jesus, but how can I show You that I love You, too?” His still gentle voice replies, “Trust me.” So I continue to live day by day, trusting and hoping and thankful that You are increasing my faith through this struggle. “Now faith is being sure of what we hope for and certain of what we do not see” (Hebrews 11:1).

So with the faith You’ve bestowed on me from the start-line of this journey, my life, I look for signs of your presence and truth. I look to You, my Healer, my Hope, my Everything.

I come to You in the mighty name of Jesus. Just say the Word, and I will be healed.

Yes life is hard, but You are good ALL of the time!

Four Months After Treatment
June 6, 2011

From James:

So Young’s radiation treatment ended about four months ago, on February 2. It’s hard to believe that it has been almost 7 months since the original diagnosis on November 12, 2010. I have good news to report!

So Young’s appetite has returned to normal. Before, foods tasted strange to her, and she often didn’t feel like eating. These are common side effects of radiation treatment. Now she is able to eat three meals a day.

The severe fatigue she once experienced has diminished as well but has not gone away completely. Feeling very tired is also a side effect of radiation, one that we would expect to improve 3-6 months after treatment is complete. She still feels tired more than I would characterize as normal, but she is able to get a full night of sleep and stay awake for most of the day without feeling exhausted. I write this, however, even as she has had another bout of severe tiredness this morning, so I wouldn’t say that she is over this issue.

The fact that these symptoms have improved shows that most likely the loss of appetite and fatigue were symptoms of radiation itself rather than the brain tumor directly, medication, or one of the myriad other possible causes. Still, each week and even each day varies, so I’m monitoring the situation closely at all times for changes.

So Young’s hair is most decidedly growing back. There was a time early on when we thought (wrongly) the hair loss was going to be permanent. We later learned that it is most often temporary, so compared to our original misimpression, this is great news. She basically lost her hair all the way around her head and in a spot right above her forehead. It is all growing back now with dark, fine baby hair that we assume will become more like normal hair later on.

So Young’s vision is unchanged. She had a very bad day last week when she felt like she was going blind, but it has stabilized again. She said everything was turning completely white on that day. Her eyesight varies day-to-day. There is no clear reason why. She describes it as “static” or a “haze.” She has trouble recognizing faces. She reads things on the Internet using her iPad, which she finds useful for zooming into text. Zooming in doesn’t make things clear. It just increases the size of the blurry objects she is looking at.

I had a checkup with our optometrist this week, and based on a recommendation from our good friend Lucia, asked if there was a way to correct So Young’s vision. We had assumed that there wasn’t, because no doctor had mentioned it so far and her eyes and optic nerve are in perfect condition. The problem is that her brain can’t process what it is receiving from her eyes. Still, it never occurred to us to ask, so I did, and they said that they can’t make things clear, but there is a lot of technology available to magnify objects near and far, such as telescopic eyewear. I am bringing So Young in during early July to investigate further. The doctor said it is a matter of trial and error. So Young has a great sense of humor about it and jokes about how she is going to look big, thick glasses that magnify her eyes to 10x their size.

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.

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