Chemo Starting Tonight September 28, 2012

From James:

We got the pills today, and in a couple of hours, So Young will start chemotherapy for her brain tumor.

I want to thank everyone for your notes on the blog, tweets, emails, phone calls, personal visits, etc. The encouragement is tremendous. I read every note to So Young. I’m not always able to respond because things are crazy, but I want you to know she is blessed by each and every one of your words and especially your prayers.

A couple of nights ago, So Young was extremely tired, as she has often been of late, lying on her bed and crying quietly, heartbroken and afraid about the progress of her illness. Without any context she said, “I want someone to run the race for me.” I knew she was talking about the half marathon we signed up for in October that we won’t be able to run. Part of her wants me to run it alone, but we both know I need to be here and can’t. She wishes I could run it in her name, like she ran her first marathon with my name emblazoned with a Sharpie across the back of her shirt.

That random, out-of-context statement, so typical of So Young if you know her well, is an apt metaphor for what’s happening right now. So many of us are “running the race” for her when she can’t. Praying and fasting on her behalf. Providing words of encouragement. Bringing meals. Visiting just to talk. Cleaning. Keeping an eye on her to make sure she’s well. Making sure she takes her medication.

Thanks for running the race for So Young. We’re at mile 20 with an incredible number of great people supporting us as we go. I would ask you to pray that the chemo will do its job, but I know you already are.

Chemo Starts in a Few Days September 26, 2012

From James:

Short Version: So Young is starting chemotherapy soon. It doesn’t feel like it is soon enough. Her symptoms are getting worse. We stand by our hope in God.

Long Version:

We finally met with our medical oncologist today, and as expected, he recommended chemotherapy, specifically temodar, which is a well-known, tried and true drug that has a good track record with brain tumors like So Young’s. It could be two or three days before we get the pills in the mail. Johns Hopkins is working to get insurance company pre-approval (we’ll get the drug regardless), and I guess it isn’t the kind of thing you just swing by the pharmacy and pick up.

We looked at the MRI again. The image will function as the baseline to which future MRIs are compared. Dr. Holdhoff said that it still looks like a Grade 2 tumor. Grade 2 tumors are slow-growing. However, for some reason it is growing fast. Its cells are dividing. It is behaving more like a faster-growing Grade 3 or 4. The great thing about chemotherapy is that it attacks all of the fast-growing cells in the brain at once, whereas radiation works within a limited field.

So Young is going to be taking two cycles of temodar to observe its efficacy. A cycle consists of a 28-day period. She will take one pill a day for the first five days of the cycle. For the remaining 23 days, she will not take the medication, and then the cycle will start again. At the end of the second cycle, So Young will undergo another MRI to see the results. If temodar does not work, we may try another type of chemotherapy or a clinical trial.

All reports are that temodar isn’t the worst kind of chemo you can be on from the perspective of side effects, compared to those used for other cancers. Fatigue and nausea are the two most prevalent complaints. So Young is already fatigued most of the time, probably because of the location of the tumor. In fact, she is on a high dose of a medication known to cause insomnia, with no such side effect for her (i.e., she sleeps a lot despite it). They will draw blood weekly to monitor her immune system, which would tend to be suppressed by chemotherapy.

Meanwhile, So Young’s impairments have progressed significantly during the past week. The right side of her body is greatly affected by the tumor now. It used to be not as noticeable. Now she is alarmingly impaired.

The vision in her right eye is much worse, possibly as bad as her left eye. It is a labor for her to talk. She talks quietly. People think she just sounds tired, but it is the tumor. She is in fact very tired much of the time. She sometimes has difficulty swallowing. Her right arm hangs limply by her side. It is slow, weak, and uncoordinated. She can’t use a fork or chopsticks well, sign her name well, etc. Her right leg is weak, causing her to limp and stumble. All of these symptoms were barely noticeable a month ago but are now undeniable. They are progressing daily.

Thanks as always for your continued prayers. I think your prayers are sustaining us. Right now, So Young is in a bad state physically. It’s also hard on her emotionally to watch this happening to herself, unable to do anything about it. I’m in reactive mode a lot these days. Lately it has hit pretty hard emotionally. It is like a nightmarish rerun of her initial diagnosis, only with worse impairments than the first time. The loss of eyesight was bad, but I think it was easier to deal with because it was an abstraction to me. You have to imagine what it is like for someone to lose their vision. It’s more painful to see someone slowly lose the use of half her body. We are standing by the hope that, God willing, it will be temporary and won’t progress further. Ultimately our hope must be in God, not in our health or anything He gives or takes away.

Tumor Board Results and Next Steps September 24, 2012

From James:

The tumor board met this morning and were in “uniform agreement” that this is “tumor progression.” They do not recommend surgery to remove the tumor because of the location. They also do not recommend another biopsy. They are recommending chemotherapy. We would also have the option of participating in a clinical trial of some kind, possibly.

Our medical oncologist is Dr. Mathias Holdhoff, with whom we met early on when he decided to “hold off” on chemotherapy at that time. We will meet with him at 3 p.m. this Wednesday, September 26.

I asked if the tumor is still considered Grade 2, since it grew so quickly. The doctor said that higher grade tumors do tend to “light up” on the MRI, but that is not always the case. (If it had lit up on the MRI, they almost certainly would have performed another biopsy, she said. They don’t perform biopsies unless there is a change or for clinical trial qualification.) So it may or may not be Grade 3 or higher. Regardless, it is “not behaving well,” and we need to take immediate steps.

I want to thank everyone for your blog comments, emails, phone calls, and in-person words of encouragement. We especially appreciate all the prayers. You can click the “Prayer Requests/Answered Prayers” link to view a list of what to pray for now. Also, if you are interested, our amazing church family has organized a period of prayer and fasting for So Young. You can view the sign-up list here: http://goo.gl/MPjMM.

Bad News September 20, 2012

From James:

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” — 2 Corinthians 4:16-18

When we got home from Johns Hopkins today, Audrey ran to the door and grinned expectantly: “What’s the good news?!” We’ve become so used to good news recently. Unfortunately, today we were surprised by bad news.

The tumor has grown again, and significantly. That is the cause of So Young’s new symptoms over the past few weeks. Now it is especially affecting her brain stem, which explains the balance and coordination problems she is experiencing. We knew from the beginning that the tumor had infiltrated the brain stem, but most of the tumor is in the thalamus, so the brain stem seemed like an afterthought early on.

Dr. Redmond said that we lost most of the ground we gained from radiation. The tumor shrank 30% before. It has regained most of that and is close to its pre-radiation size.

The tumor board at Johns Hopkins will discuss So Young’s case on Monday. Dr. Redmond said that they will most likely recommend chemotherapy, which So Young has not received yet. We were waiting until it became fast-growing. The hope was that it would not.

The news brings up new questions and fears. Is the tumor really slow growing? Now there is significant doubt about that. It doesn’t “light up” on the MRI, but they didn’t get a good sample during the biopsy, and for it to increase in size so quickly seems strange. They have her on big doses of the steroid dexamethasone to see if her symptoms abate if the swelling in her brain goes down.

So Young’s symptoms seemed so vague before, but now everything seems to have an explanation. She complained of weakness on her right side, a loss of coordination in her right hand, trouble swallowing, slurred speech, etc. My reasoning was that the tumor shouldn’t affect the right side of her body, because the tumor is in her right thalamus. But the brain stem controls motor function, so now her symptoms make sense to me.

So Young took the news quite hard — understandably so. She is shaken. I think that this is almost as hard for us emotionally as the initial diagnosis in November 2010.

The perspective that we are trying to take is that this is only round two of the fight. Or perhaps a more apt analogy is mile 20 of a marathon. A marathon is 26.2 miles long, but runners say that the race doesn’t start until mile 20 or so. I have seen So Young several times at mile 20, and it isn’t pretty. She can be completely bereft of energy and the will to go on. But you have to stick through it, or you won’t finish the race, even though you are so close!

I really appreciate the encouragement we are already receiving from our loving community of family and friends. You are so dear to us to pray, call or write, offer and provide help, or to even just listen. Some of you have taken some pretty raw, tearful phone calls from So Young today. All I can say is that you are amazing for handling it so well and being there for her.

In the end, as my friend told me today, it isn’t the medicine we’re going to trust in this situation, but God.  He alone has the power to restore So Young, and whether or not He does, we trust his love for us. We won’t lose heart.

Early MRI Tomorrow Because of New Symptoms September 19, 2012

From James:

I am taking So Young to Johns Hopkins tomorrow for an unexpectedly early MRI. She was originally scheduled to get an MRI on October 23, but she has been having new symptoms that prompted the doctors to schedule an earlier appointment.

Over the past few weeks, So Young has started having balance issues. During a recent two-day period, she fell down three times. She seems increasingly unsteady on her feet. She requires a lot more assistance to get around without stumbling or tripping. She walks down any kind of incline at an increased pace, as if she can’t slow herself down. Other people have noticed the difference and pointed it out to us.

Also, So Young’s speech has changed. It’s hard to describe, but it is as if she has a different way of talking now, a different intonation of voice that sounds listless and less clear than previously.

She has had headaches more often in the morning, although not every morning. She also gets them when she bends over to pick something up. On Saturday morning, she had one of the morning headaches – not a major one, really – but she ended up nauseous and in bed all day. So Young is also tired more often these days.

I looked at a notebook I kept early on, before her radiation treatment, and I realized that her current symptoms resemble her earliest symptoms, except for her vision, which has improved since then.

By coincidence, we had follow-ups scheduled during the past week or so with her general practitioner and endocrinologist. The endocrinologist suggested that she see her neurologist as well. The three visits resulted in a resounding “I don’t know” regarding her symptoms. I called Johns Hopkins just to inform them, and they immediately rescheduled the MRI. They also prescribed dexamethasone in case So Young has edema (swelling) in her brain.

We are worried but hoping the MRI turns out fine. It feels like this even when she doesn’t have any new symptoms.

As a side note, we also saw an ophthalmologist last week. She determined that So Young’s vision is 20/100 in both eyes when it is corrected. It is 20/CF uncorrected, however, which means that she can’t see the eye chart at all when her vision isn’t corrected but can count fingers (“CF”) at about six feet. This means that So Young is officially not legal to drive, which we already knew. I just wanted an official confirmation, since her license has expired. You have to have 20/70 vision in at least one eye to drive in Virginia.