Archive for November, 2012

Visiting So Young
November 26, 2012

From James:

I created a new page on the blog, which means that it will (for now) be a permanent fixture here. In the upper-right corner of the main page, you will see a Visiting So Young link. You can click it to find out how and when to visit So Young.

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Good Days and Bad Days
November 25, 2012

From James:

This week started out great because we finally got the portable wheelchair ramps: all five of them, eventually. This was huge. It was excruciating for everybody involved to take So Young from the bedroom, down the stairs, to the car (more stairs), and back again. Now that we have the ramps, the only remaining mountain for So Young to climb when coming and going is the stairs to the top level. It’s still unsafe for her to walk down them, although she does it with much help, and it is exhausting and unsafe for her to walk up them. That should be resolved in roughly mid-December, when we get the chair lift. The fact that we have ramps and are getting the chair lift is an act of grace and generosity from many people. If I was to write a Thanksgiving post (and I didn’t, shame on me), I would surely mention the ramps, the chair lift, and pill organizers, but the latter is another story entirely… Here is a picture (not so great, taken at night) of the ramps.

Wheelchair Ramps!

Wheelchair Ramps!

Like clockwork, So Young seems to be gaining some energy now that the chemo is wearing off and Mom and the hospice people are working hard to get her on a regular, more balanced daily schedule. She also started gaining energy last month just about the time the second cycle of chemo was scheduled to start. She slept less on average this week and went out more because of the ramps. It’s a mixed bag, however, because she would be more alert but would have another tumor side effect worse than normal each day. Also, she tends to “crash” in the extreme when she does too much. So for example, I took her out of the house on Wednesday, Thursday, and (reluctantly) Friday. I say “reluctantly” because I don’t want to overdo it. On Saturday, she slept 20 or so hours, and her ability to swallow was quite impaired during every meal that day.

The tumor side effect that was worse today when I took her out of the house was her cognitive ability. I have mentioned this to many people, but there is a consensus that I am making it up or exaggerating it, because most people see her when she is sharp and alert. Today she was slipping cognitively a lot, particularly in the area of remembering the names of things, a disorder that is called anomia. We went to Starbucks. She loves a drink called the Salted Caramel Mocha. Previously, she couldn’t remember the precise name and called it “Salted Crack.” Very funny. Today, we made an earnest effort to practice and remember it, but after several rehearsals in a row, the best she could do was “Salted Vanilla Marshmallow Nut.” I am not kidding. She consistently said that after I told her the real name, and she was making a serious and earnest attempt to get it right. Cute but alarming. Believe me or not. I compare it to when she was falling down way in the beginning. It was an innocuous symptom that only I cared about and several doctors were puzzled about. One call to Johns Hopkins and an MRI later: Regrowth.

So this brings me to the title of this post: “Good Days and Bad Days.” You may see her alert and brilliant on one day, sleeping an absurd number of hours and incoherent the next. That’s the way it is. As a person highly invested in this situation, I am trying (and maybe only really trying) to not make too much of any one daily victory or any one daily defeat. Otherwise, I will be yanked around like crazy and probably would go crazy. Also, I can’t put too much stock in bleak pessimism or high-flying optimism. Why? Because it would drive me crazy and rob me of any scrap of peace I get each day. Neither might come true. I don’t control either. Nobody on this earth does. Why pretend?

This brings me to the subject of hope. What is hope? I have been asking myself that a lot these days, because most often I hear it in only one context: That the body might live. That is hope. Hope is that my physical body will live more years. That’s it. Then what? That’s why I only want to put my stock in hope with a capital H: Hope that, although my body will die, still I will live. That’s our hope. That doesn’t mean we don’t pray for miracles. I do every day. But what it does mean is that, when we pray to God for a miracle, we pray with the complete and utter realization that WE ARE NOT IN CONTROL. If we were, if all of our suggestions and earnest pleas came true, well, we would be God. We would not be what we are: People. With mortal bodies. In which we can put no hope. But in the meantime we hope for a miracle, with the certain Hope that, with or without a miracle, a person with So Young’s faith will live on.

When you are in a situation like this, you have these uncomfortable, grownup discussions that you never wanted to have and can’t handle. Today, So Young said, “Do you have some pills for me when I crash?”

I said, “What do you mean, ‘crash?'”

She looked confused and said, “When I die. Do you have…” motioning with her finger, as if to conjure them up, “pills. Like a pill bottle or something.”

“Do you mean something for the pain, in case there is pain? Is that what you’re talking about?” I asked.

“Yeah.”

“Yes, they definitely will, So Young. I don’t have it now, but if there is pain, we’ll get it right away.”

“OK.”

“Why? Why are you talking about death, So Young? Are you worried about that?”

“I have a feeling death is close.”

“Why do you think that?”

“Because of my eyes getting bad and stuff,” motioning with her finger again.

I told her that she shouldn’t think about death. She shouldn’t worry about that. Our day and hour isn’t ours to know. We just have to take each day as it comes, trust God, and hope for the best.

Results of Today’s Tumor Board
November 19, 2012

From James:

The Johns Hopkins tumor board met today and discussed So Young’s case once again. They noted that, as Dr. Holdhoff told me today, “The difference between the June MRI and the most recent MRI is dramatic,” meaning that the post-radiation growth was significant. “The differences between the two most recent MRIs are subtle.” They didn’t see dramatic results that they might have hoped for.

The doctors also observed that there is a “bleed” in the tumor. (Dr. Holdhoff actually told us about this last Wednesday.) So Young is in no immediate danger from the bleed, but this is a complication that very directly  affects her treatment. First, she can’t take blood thinner anymore to combat blood clots. Second, she can’t take Avastin as originally envisioned, because it is known to cause blood clots. So we are continuing with chemo but not having treatment added to it.

Johns Hopkins will also be installing a “filter” in So Young either Wednesday or early next week to prevent future blood clots in lieu of the blood thinner. It’s an outpatient procedure, although somehow I suspect that So Young’s recovery won’t be instantaneous.

I asked Dr. Holdhoff what the objective of the continuing treatment is. The objective is not to cure the disease at this point. It is intended to slow what is seen as an inevitable progression, and because of the minimal side effects So Young has experienced, it is thought that the chemo is doing no harm.

Inconclusive MRI
November 13, 2012

From James:

I think that the best word to describe today’s MRI is “inconclusive.” The MRI looks similar to the last one, taken on September 20, but there are some subtleties that could be negative and that the doctor wants to have examined by the radiologist. The chemo may be doing some good and certainly is not doing harm. The doctor wants to continue with the same chemotherapy and to add Avastin. The tumor board will meet about So Young’s case again on Monday to confirm this course of treatment. The only reluctance is that Avastin causes blood clots and some potentially fatal (but rare) side effects, so those have to be considered. If you don’t detect a whole lot of enthusiasm in my tone here, it’s because the doctors in general are not overflowing with optimism regarding So Young’s case as of late.

Thanks everybody for your prayers and encouragement today. One example: I got three text messages from guys at my church this morning, on the way to Hopkins, one at 10:39, another at 10.40, and still another at 10:41. I asked if this was a conspiracy, and Lawrence replied that there was no earthly conspiracy afoot.

Audrey was quoting this passage this morning, and I wanted to share it with you, because it speaks to all of us, sinners and sick alike, in relation to God’s goodness and praiseworthiness, regardless of our circumstances:

From Psalm 103:

Praise the Lord, my soul;
all my inmost being, praise his holy name.
Praise the Lord, my soul,
and forget not all his benefits—
who forgives all your sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion,
who satisfies your desires with good things
so that your youth is renewed like the eagle’s.

Two Years after Diagnosis and MRI Tomorrow
November 12, 2012

From James:

Today marks the two-year anniversary of the original MRI revealing So Young’s brain tumor. It’s an interesting coincidence that we have another important MRI taking place tomorrow, this time to assess the effectiveness of the chemo after the tumor began growing again, this time rapidly on her brain stem.

Once again we want to thank everyone for your prayers and many ways of showing support. A couple of examples: My colleagues at the State Department generously donated money to pay for medical expenses, many of whom have never met So Young or the girls. Also, you may have read a few comments on the blog recently from Seattle. These are friends of Ann, a beloved friend of So Young’s with whom she shared Christ just after the diagnosis. Ann became a Christian, moved across the country, and found a new family of believers to whom she is now a blessing. They’ve been writing on the blog to tell So Young how the legacy she left with Ann has carried over as a blessing to them. It’s such a meaningful thing for So Young to hear. It shows her that her life has made a difference in the midst of suffering. Those are just two examples. There are many more.

I want to ask for your prayers for my coworker Jennifer, who has posted comments on this blog before and continues to show support and concern for So Young. She recently underwent serious back surgery and is recovering. She could really use your prayers as well.

I’ll tweet the results of So Young’s MRI tomorrow, possibly around 4 p.m. or so. Thanks again for everything!

Concussion, Progression, Hospice
November 9, 2012

From James:

Short Version: So Young had a concussion a week ago but is fine. Her impairments continue to progress in the same gradual way, to the point that she is essentially housebound (and in her bed) most of the time. Hospice has started coming to the house to help.

Long Version:

Last Friday, November 2, So Young fell while getting out of the car and hit the back of her head on the pavement. Her eyes rolled back, and her speech was noticeably altered, so she was quickly taken to the ER. The CT scan revealed no bleeding on the brain, but she did have a concussion and a hematoma. (A hematoma is kind of like a bruise.) It isn’t entirely surprising that this happened, because she falls frequently  — probably over a dozen times during the last two months — but usually harmlessly and always inside the house. It’s almost impossible to completely prevent her from falling. I’m disappointed that I didn’t foresee this happening outside the house early enough to prevent it.

The fall, combined with the continued progression in symptoms, convinces me that I need to be more selective about taking her out of the house. Before the fall, she wanted to go out every day, and as much as her friends were uncomfortable doing so, they still did it because they love her. Now I have to be there to take her out, and even then it is a struggle for her.

Her mobility is increasingly diminished. When Dad and I helped her into the house recently, her struggle to walk was extreme. She could barely make it from the car, to the front door, and to the couch on the main level. I led her from the front, holding onto her arms like I always do. Dad walked behind and moved her right leg forward for her with each step. I later realized that I had to use the wheelchair just to get her to the bathroom from the couch, a few feet away. At the end of the evening, going up the stairs to the bed was a great exertion for her. I felt so bad making her climb those stairs.

Mom and I experienced something similar as I took her to a follow-up appointment this Monday. I learned that 15 minutes is not long enough to get her out the door! (I also forgot the wheelchair and parking pass at home… Not my finest hour.)

Dad and our friend David are working together to plan and build a wheelchair ramp to make it easier for So Young to get to the car. We are also investigating a stair chair she can sit on that would take her to the top level automatically. The hospice people suggested that we might consider putting her bed on the main level instead of getting the stair chair, but I don’t know if we’re ready for that yet.

So Young is still sleeping most of the day. Cognitively, I am convinced that she is diminished. Yesterday, Shannon reminded her that today is Shannon’s birthday. So Young asked her how old she is turning. So Young guessed 11. No. 12? No. Shannon is turning 14. So Young also gets words wrong and doesn’t track events well in the short-term. A syringe, for example, is inevitably a “popsicle stick.” You see her eyes searching  and she points her left finger around, as if searching for the right word or memory.

She can’t take care of most of her own needs without assistance. She can’t walk on her own, obviously, but also she can’t dress or bathe herself.

Meanwhile, Mom and I have both noticed how sweet and kind So Young is through all of this. Many people become angry or depressed when they are this ill. So Young is an exception so far. When I help her back to the bed from the bathroom, for example, she always says, “Thank you, Daddy,” to me. (She doesn’t think I’m her dad, by the way. Parents reading this know that you often end up calling each other “Mom” and “Dad,” as strange as that may seem.) A couple of times she has told me in a very heartfelt way that she is thankful that I am taking care of her. I could tell she was crying, but the tears don’t come anymore because of the tumor.

When we visited Dr. Holdhoff a few weeks ago, he suggested that we get hospice involved. Capital Caring started coming to our house on Wednesday. We’ve met the nurse and social worker so far. A doctor, nurse’s aides, and a chaplain are also part of the team. They will be monitoring So Young’s health and making sure she is comfortable. They also help with the family’s practical, emotional, and spiritual needs during this time.

We’ll be visiting Johns Hopkins this coming Tuesday, November 13, to get a follow-up MRI and appointment. If the chemo hasn’t been working, we will likely pursue some other course of treatment, such as a different kind of chemotherapy or more radiation. Dr. Holdhoff has mentioned Avastin as a possibility.

At her primary care doctor’s suggestion, I am looking into taking more time off during the next couple of months to spend more time with her and to have more family time in general. “This is your wife,” he said.