Archive for the ‘Eyesight’ Category

A Good Report from the Optometrist
September 27, 2011

From James:

I have good news to report from the optometrist (Dr. Richard Jablonski) tonight to confirm what So Young thought about her vision. Her corrected vision has indeed improved. Uncorrected, it’s still atrocious (she can’t read anything at all on the eye chart, even the largest letter), but her right eye can be corrected to 20/100. This means that what others see at 100 feet, she can see at 20 feet with her contacts on. Her close-up eyesight can also be corrected using standard reading glasses, which we purchased (2.50 magnification).

So Young is leaning heavily on her right eye for her vision. The doctor said that her left eye is more like 20/400. She also can’t see the color red very well with that eye. Diminished sight in her left eye makes sense, because the tumor is in her right thalamus.

Before So Young started losing her vision, her eyesight was corrected to 20/20.

We also looked into bioptic lenses, which are sort of like binoculars attached to eyeglasses. They helped and, with training and certification, could possibly be used for driving. Much hilarity ensued as we watched So Young try on a couple of pairs that gave her cartoonishly large eyes. However, because her eyesight is trending toward improvement and the bioptic lenses cost close to $2,000, the doctor recommended waiting a while to see if it will even be necessary in a few months.

If her vision improves to 20/70, she would be able to do some daytime driving.

Overall, the doctor said that this was an encouraging checkup, because he has definitely seen improvement over time. So Young is ecstatic and is going around reading everything she can out loud. Thank God for the blessing of being able to see!


A Hopeful Sign
July 7, 2011

From James:

On Monday morning, So Young realized that her left eye has regained some of its sight. Previously, it was her worst eye, which makes sense, because the brain tumor is mostly on the right side of her brain. In that eye, the vision was very blurry (as it continues to be in both eyes), but there was something like a black spot in the middle of her field of vision. The black spot appears to be dissipating. Her vision has by no means been restored, but this is a hopeful sign.

A severe loss of vision — near-blindness — continues to be the primary symptom of So Young’s brain tumor. It affects everything she does. I remember being heartbroken early on when she said, “I just want my vision back. I want to see my babies again” (referring to our three girls). It would mean so much for her to get it back. We are thanking God and continue to pray for complete healing. Thank you for many of you who are continuing to pray.

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.

A Dream
April 30, 2011

From James:

When So Young woke up this morning, she told me about her dream.

In the dream, she woke up from a night’s sleep and found that she could see perfectly. Her eyesight was restored. She ran out of the house and told everyone.

She went to see her friend Grace Oh and told her, “Grace! Your dream came true! I can see again!” (Grace recently dreamed that So Young could see again.) They screamed and embraced, jumped up and down.

She continued to tell everyone: friends and neighbors, people at church. She received a myriad of reactions, but overall everyone was amazed at the miracle.

So Young woke up early this morning, when it was still dark, and realized it hadn’t really happened. Her eyesight hadn’t changed. She was afraid of when the daylight would come, and she would encounter her profound loss of vision again in its fullness.

The dream affected her greatly. She cried as she told me about it. I gave her theological reasons why we suffer: for our sanctification, because of the Fall, because of the flesh. Jesus suffered, too.

She wanted to know why her in particular? I tried to explain there was no reason except to glorify God. She said she was losing patience with God. When would it end? My explanations didn’t seem to work too well, so I prayed for her.

This afternoon, So Young slogged a 9-miler. It really took a lot out of her. “I feel like somebody beat me up,” she said, resting in bed afterwards. But then she said she realized something as she ran. She realized that God’s Spirit was telling her, as she plodded along, that without this suffering, this loss of sight, she wouldn’t see as much as she has seen of Him.

Steroids, Headaches, and the Purpose of It All
March 13, 2011

From James:

Today may be So Young’s last day on steroids. She has been taking some pretty high doses over the past few months to reduce the swelling in her brain caused by the radiation and the tumor itself. She weaned off to the point that today she took only half a pill (1 mg). Tomorrow she will take none, unless the doctor orders otherwise.

Yesterday, we attempted to run a long run together (5 miles) while Mom took the kids shopping for spring clothes. So Young said her head was hurting beforehand, and then as she started to run, with each step her head hurt, so we called it off for her safety. She said she had similar headaches prior to radiation, which really means that she had them prior to being on steroids, so this could mean that she will resume steroids after I call Johns Hopkins tomorrow, although perhaps such headaches are not a problem. I’m not sure.

She has had two very bad episodes of headaches twice so far: once on the morning before she met with her neurologist (pre-diagnosis) and once on the afternoon before the biopsy was performed. They were quite severe — debilitating, I would say — and caused by intracranial pressure (ICP), which is pressure in the skull caused by the presence of the brain tumor as it blocks the normal flow of fluid. She was essentially crying in pain and vomiting as a result of these. We’re keeping a watchful eye to ensure that these don’t happen again. If they do, I believe they will eventually recommend a shunt to enable the normal flow of fluid and relieve the pressure, which is quite common. It is also possible that they will recommend that she up her dose of steroids again, at least in the short term. So Young hates the steroids because they cause her to gain weight, but if that is what they recommend, there is nothing we can do about it.

Her eyesight remains essentially the same. As usual, I still contend that it is getting better, and she adamantly insists that she is just coping better. For example, she read the fortune from a fortune cookie the other day. That’s progress, right? She said they are so hackneyed that she guesses at the words and gets them right. One day at church I asked her if she could see the words projected on the screen at the front of the church. “There are words up there?” was the response.

Meanwhile, we are adapting well to our new routine — me taking the kids to school in the morning, Mom picking them up in the evening, etc. Friends often visit So Young, although not every day, which is good. I work from home Wednesday afternoons, which So Young appreciates. We will continue to receive meals twice a week through March.

The hardest part right now for So Young is the emotional dimension of things. When she is alone, she sometimes feels lonely and sad. When she has a lot of visitors and is busy, she is easily exhausted. We are trying to achieve an elusive balance between the two extremes. (Please don’t read that as a plea to stop visiting! So Young really wants visitors. She’ll say “no” if she needs to rest.)

So Young asks why all of this is happening to her. She wonders if there is a God-ordained purpose to it. We always conclude that there is a purpose but that it may not be knowable yet.

Our pastors are preaching through the book of Romans, and So Young feels that the last two sermons in particular have been an answer to her prayers, in which she has asked God why this is happening. The first of two about suffering is already available on the ABC web site. The second should be available soon:

One Month After Treatment
March 1, 2011

From James:

“Don’t worry, Mommy. You’re going to be OK,” said our six-year-old Audrey the other day, after praying for So Young. “A lot of people are praying for you — even people you don’t know.”

That kindergartener’s prayers and the prayers of many others must be taking effect. About a month after the end of radiation, So Young is doing remarkably well.

On Sunday, she joined us on a family bike ride on a beautiful, pre-spring day. And she actually rode her bike. At first, she said she would “run beside us” while we rode to the school, which is a couple of blocks away. The kids said she should ride her bike, too, but I said that it would be too difficult for So Young, which of course made So Young want to ride her bike all the more. We rode all around the neighborhood, well beyond the school. She only fell once during the two-mile or so trek.

This was a risky stunt, I know, but you have to understand that I can’t contain the lady (and nor do I want to). So Young has been run/walking alone outdoors frequently since our first run together. She is avoiding tripping during her runs by lifting her feet more, especially when she sees cracks on the sidewalk or path. I tested her recently to make sure that she can see cars while she crosses the street, and she passed the test perfectly.

I’m not sure exactly how to run with her as a “guide” anymore. We took a second run together recently. I held her hand and called out many of the cracks and curbs, but she eventually got annoyed, so I stopped and she promptly tripped again, just like the first time.

All of this is to say that she is doing very well physically and remains persistent. It’s important that she continue her life in this and a myriad of other ways. We hope that this will be a very long race.

Another bit of good news is that the Johns Hopkins folks are weaning her off of the steroids in earnest now. The steroids reduced the swelling in her brain while the radiation was taking place, but they cause side effects like weight gain, which is really troubling to So Young. They also have negative side effects in the long term, such as permanent muscle weakness, which hasn’t occurred yet but could if she stayed on them. So we are weaning off and hope to be completely off in about two weeks.

Another recent change is that So Young is sleeping a lot better at night, without the assistance of medication. That is a direct result of her weaning off of the steroids.

We have a date for our follow-up MRI and appointment with the radiation oncologist: March 21.

These verses really struck me when I read them this week:

I remain confident of this:
I will see the goodness of the LORD
in the land of the living.
Wait for the LORD;
be strong and take heart
and wait for the LORD. — Psalm 27:13-14

This tells me that as a Christian, I don’t merely have hope for heaven. I can also have hope here on earth (“the land of the living”) as I watch and wait for what He is going to do. Meanwhile, be strong and take heart.

Hopeful Signs
February 14, 2011

From James:

On Saturday morning, So Young reported that she saw a “clear spot” in one of her eyes, a possible sign that the tumor is retreating. We promptly watched a movie at the theater that afternoon, while her brother Paul watched the girls. Yesterday, however, it returned to the way it was before. She compares it to “looking through fogged up glasses” all the time. Still, we expect the next few months to be a time of constant change with regard to her condition, as her body fights to regain ground.

Yesterday, So Young took her first run/walk outside since her vision loss became severe months ago. Actually, it was more of a “run/walk/trip,” as she says. I acted as her guide, a new role for me. Many times during races, we have seen blind runners — often young war veterans — running tethered to a sighted runner. They don’t generally hold hands, but that was our method. Before a curb, crack, or hole in the road, I would grab her hand and say “3-2-1 crack!” or what have you. She could sometimes see the obstacles and sometimes not. Once she told me that she could see most of the cracks. I stopped calling them out, and she promptly tripped. She didn’t hit the ground, and that was her only stumble in three miles.

We ran at twilight. I could see OK, but things are darker to her eyes.

“Most people wouldn’t run if they knew how dark it is for me,” she said. “But I’m stubborn. Full of pride.”

I told her that’s not pride. That’s perseverance.

Born for Adversity
December 30, 2010

“A friend loves at all times, and a brother [or sister] is born for adversity” (Proverbs 17:17).

From James:

Yesterday, our dear friends Helen (who brought a meal for us Tuesday) and Erica (who did the photo shoot for us) drove So Young to Johns Hopkins. They left at around 8:15 a.m., and I believe they returned sometime after 3 p.m. — no small sacrifice of time, considering that they used a vacation day away from work in the process, but sisters like them are “born for adversity,” as the proverb says.


Helen and Erica

Helen’s sister, Sungjin, is driving So Young today. She had to find arrangements to watch her kids, and I know she has other things going on, so it isn’t easy, but Sungjin has always been there for So Young. Again, a many hour journey. She’s glad to do it for her friend.

So Young’s vision is alternately worse and better. Yesterday it was particularly bad, although on Tuesday she said she could see clouds in the sky (which is poetic) and the Mormon Temple (which may not be saying too much, considering its size and shiny-ness). On Tuesday, she also wrote her first text message to me in a while: “i luv u xoxo.” Not to get too personal, but the next one said, “y ib cae. goig 2 kubxh.” Yeah, I have no idea what that means, either.