Chemo Starts in a Few Days

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.

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10 Responses

  1. It hurts to read this. All the prayers I have are going to you. Praying that the pills come and will do what they need to do.

  2. James and So Young
    I am praying for you and your family everyday. I wish I can do more. Thank you so much for sharing and allowing us to be a part of your life.

  3. James and So Young,
    Praying for you daily. Lifting you up to the One who is able. And hoping hoping hoping always!

  4. Hi Guys,
    Dreadful news, but don’t hang up those running shoes! Keep the faith! Our God is able!!
    Our prays have continued for you …………rest assured that Bethany is not to forget you in her bedtime prayers!!
    Love to you all

  5. Stand firm on the promises….Praying for you each day. This journey is hard, but, God gives the strength each day and love and prayers from all of us hopefully will help you carry the burden of emotions. God Is Good..So Young has to be the Guest of Honor at our Bible Study to speak of his grace and answers to our prayers one day.

    Love Robin

  6. Keep your hope in God, James. We continue to pray for you.

  7. The Creator, The most High, Sufficient one who sees everything, we praise you for being our Lord!

    Praying for you constantly from Colorado…

    Aunt Grace

  8. My family (biological and church) pray constantly for you all. Keep your faith in our God who sustains us through all things.

  9. You are in my heart and prayers.

  10. We are praying for healing, So Young and James. We are also praying for strength for the journey and God’ s peace as you walk this road marked with suffering. All our love, Marilyn Christensen

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