Improvement, UCLA Brain Tumor Conference

Susan’s infection finally resolved with her 10-day course of antibiotics, leaving her with improved alertness, memory, and strength over the past week. On Palm Sunday, we visited my mom at UCLA toward the end of her earlier hospitalization, so Susan actually had her first trip to the medical center as a visitor. Woo-hoo! That’s progress. Later, we enjoyed a dinner date at Jerry’s Deli in Westwood, where we always seem to get the same table with her wheelchair. As we enjoy her lift and lighter mood, the contrast is striking. It’s amazing how disruptive these ailments can be, putting a clamp on so much of her ability to function. We trust and pray now that the blood clot in her brain will dissolve fully over the coming months. We continue to ask God for healing from cancer and all of its effects and for her strength and restoration. We trust Him for the outcome according to His will.

Last Friday and Saturday, my mom, sister and I attended the 9th annual UCLA Brain Tumor Conference on the campus in Westwood, hosted once again by Neuro-oncologist Timothy Cloughesy. Susan joined us on Saturday. Like last year, I realized again that the UCLA neuroscience team of oncologists, surgeons, radiologists, pathologists, social workers, nurse practitioners, and staff are really smart, really hardworking, really caring, and really committed to helping rid people of brain tumors. Their research-driven program incorporates the global body of knowledge about brain tumors, pursues avenues of the science that show promise, and distills it all into practice for treating patients.

Having navigated brain tumor land for over a year and a half, I was more at ease with the volume and complexity of information and better able to absorb more of its subtle aspects. I heard again that any tumor is really a problem with the immune system being unable to stamp out rogue cells that multiply too quickly. I concluded again that brain tumor patients have one thing in common – a brain tumor. Beyond that, factors like tumor type, grade, and location, plus patient age, health, treatment options will make one person’s outcome different than another’s. I understood for the first time that even brain tumors of the same type are not the same (they’re heterogeneous). For example, one glioblastoma multiforme tumor is not like another because of unique ways one person might express proteins on the microscopic level. With these individual differences, the same treatment will not work in the same way for two people with the same type of tumor.

I also had clinical trials demystified for me a bit. I had thought (and hoped for Susan) that a clinical trial is desirable over other treatments because that’s where all the cutting edge stuff is happening. It does make sense – a breakthrough treatment needs to go through a clinical trial before it can be available to everyone, so clinical trials are a realm to search for better treatments. But I learned that CTs are also a testing ground where ineffective remedies can be ruled out, so you must beware of the risks involved. Then I realized CTs are kind of like minor league baseball. You might go to a game hoping to see the next Manny or A-Rod, but you might waste your time watching deadbeats who don’t belong in the majors. At least with baseball, the risk is limited to a letdown plus the cash you spent. While I would not rule out a CT, the benefits are clear in employing a treatment that’s been accepted as a standard of care – having passed clinical trials, more people have used it by now and the outcomes and risks are more predictable.

While Susan was praying the other night before we went to sleep, she got stuck. She said, “and Lord, please help me to…” (pause) “Please help me to…” She couldn’t get the words out – but I hoped she would because I wanted to know what she wanted God to do for her. Susan can’t communicate like she used to, so our conversation usually is limited to basic stuff and playfulness. That’s just how it is. But I wanted a glimpse of her heart’s desire, and hoped at least I could overhear it while she expressed it to her Father in Heaven. “What do you want God to do for you?” I asked. “I can’t think of how to say it.” After another pause, she said, “What am I thinking of?” She really was stuck, so I said, “God knows what you want.” She continued, “Lord, you know what I want. You know what I want. Please help give me what I want…to your glory.” So, I was content with another element of mystery on our journey. And that was a great prayer.