Another good MRI

Susan’s MRI at UCLA yesterday showed continued improvement with her blood clot getting smaller and tumor remaining unchanged and stable. As the clot from January’s hemorrhage resorbs and clears on its own, it reveals a clearer look at the tumor. Since it blocked much of the detail on April’s scan, Dr Nghiemphu couldn’t be certain about tumor stability even though things looked good in general. Yesterday’s scan allowed Dr Cloughesy a clearer view and left everyone with a sense of gratitude about Susan’s progress. She’s doing well on her Decadron taper and was cleared to stretch her dose another notch to one-half milligram every two days instead of every other day. She’ll be off it completely before long. We'll go back for another scan in six weeks. Meanwhile, Susan continues to strengthen and improve both physically and cognitively. She’s able to stand and climb steps more easily, has better mental clarity, and seems more her normal self all the time. We had a great day together yesterday with her UCLA appointments and enjoyed a lunch date at BJ’s in Westwood afterwards. We found ourselves walking past Diddy Riese after lunch, found ourselves standing in line, found ourselves ordering hand-made ice cream sandwiches, then found ourselves sitting along the sidewalk and eating them. We are mind-numbed robots with no actual control over ourselves. But at $1.50 for two freshly baked cookies squished around rich ice cream, self-control is out of the question.

The boys and I got to be lumberjacks again on Memorial Day weekend as the four of us and Daisy the dog got back to the family cabin in Angelus Oaks. We were rejuvenated by the sunny, mild weather, fragrant forest and tree-felling man work. The County of San Bernardino increased their fire safety requirements, so we had to limb-up and thin areas of the property that have been untouched during my lifetime. It’s a work in progress that we’ll continue over the summer; but we made a good-faith effort and a highly visible difference with the help of our neighbor, Jim Finn. You gotta love the power tools. Susan is yet unable to prepare meals and handle the indoor activities she used to do, but her greater independence made it possible for us to work outside without having to be with her 100% of the time. Some brief visits with friends and beautiful weather made it another memorable weekend. We treasure our family hideaway.

More grace

With no dramatic changes physically, Susan continues to improve mentally these days. She’s now more fully engaged in what’s happening around her, has better alertness and memory, and is more able to track the family’s activities from day to day without help. This kind of progress is hard to measure day to day but is obvious compared to weeks or months ago. Those who don’t see her daily tend to notice her improvements right away. Ever aware of God’s gracious hands upon us, I suspect the clot from January’s hemorrhage has continued to clear. We’ll know more about the clot and tumor when we return to UCLA next week for a scheduled MRI and oncology visit.

One highlight this week was our return together to Mayfair HS for open house on Wednesday evening. It’s been two years since Susan’s been able to be on campus for these kinds of events. We used her wheelchair and were able to zip around campus and see most of the boys’ teachers after catching one of Adam’s final choir concerts during a pizza fundraiser. In spite of a few lapses here and there, we received encouraging reports on Austin and Adam. Having feedback about their smarts, character, and positive influence on their peers makes us deeply joyful and increases our confidence about their transition to adulthood. They’re good kids – we’re thankful. I always remember Dr Dobson’s comment that adolescence for a family is like going through river rapids. You need to hang on and keep everyone in the boat. There are calmer waters ahead.

As I was summarizing our situation with some friends this week, I kept feeling grateful to God for the gift of hope during hard times. I believe it’s the great difference maker for us. It’s just hard for lousy circumstances to crush you when you know you belong to God. As I shared with one friend, I'm so impressed by the goodness of God and how He uses the challenges and tragedies of this broken world to help us grow in faith, character, and appreciation for the basics of life. We learn these lessons best by walking the path of suffering in faith and trusting the one who guides us with a reliable hand. It still sounds strange to say, but there is preciousness in suffering. The process is so much more important than the outcome. I will never regret what we're going through.

Quiet improvement

Susan continues to improve during her respite from chemotherapy. She’s more alert, has better memory and is more her normal self all the time. She sometimes confuses words and the days of the week and she’s still physically weak; but we’re grateful for the positive direction she’s moving. Although Susan doesn’t seem different to me from day to day since I’m with her all the time, people who haven’t seen her in a while often mention how much better she’s doing. Her caregiver, Ana, helps Susan on weekdays with meals, bathing, and therapy exercises and is an invaluable help for us with laundry and daily housework. Today brought us back to UCLA for a follow-up appointment with the infectious disease doctor who’s been treating Susan for her various infections including fungal meningitis. Dr Uslan echoed how well she’s doing and obviously was pleased with her energy and responsiveness. He said seeing her recovering so well made his day. We bumped the next check-up from three months to four.

A generous client of mine who is an Angels Baseball season ticket holder shared her 3 seats with us again this year for last Friday night vs the Kansas City Royals. I’ve taken Austin and Adam for the past several years, but since Austin had plans already, I thought I’d bring Susan along. The seats are in the middle of a row above field level along the 3rd base line not far from the Angel dugout. I thought she might have trouble walking up and down steps and past people in our row, so an usher let us sit above our section in a handicapped seating area. Those seats were unsold that night, so we had good viewing and plenty of room for Adam and I in stadium seats next to Susan in her wheelchair. As the game was under way and we were eating our sandwiches, I wondered how much Susan was able to follow. Just then, she turned to me and said, “It’s a full count.” The count on the scoreboard showed 3-2, a detail I doubt she could see. I knew she was following the action and we were in for a fun evening. A while later, the trumpets blared and the crowd yelled, “Charge!” I shouted “Pay cash!” – Susan cracked up and Adam rolled his eyes. It must be terribly exciting to live with me. When the final inning closed, we walked along the concourse behind center field for the Angels’ “Big Bang Friday” fireworks show. We had up-close viewing of the display along with a Rolling Stones soundtrack to wrap up a memorable evening.

God has been completely and consistently faithful to us during hard times. We are amazed. We count our blessings and give thanks. Although I work as many hours as I can, our family medical expenses have piled up since the first of the year. At times our bills have been overwhelming – but God has met our need with each time with gifts from loved ones. With compassion, my employer accommodates my erratic need for time off, sometimes for days in a row. Susan’s parents provide our caregiver for us and bring a meal each Thursday. For months, someone from church frequently has brought us extra food almost weekly. Another family from church generously provides their housecleaners for us each week. Several ladies come by each week to lay hands on Susan and pray – not to mention the countless people who pray faithfully all the time. Sunday at church someone tucked an envelope into my hand containing a large check. As we approach two years of the hardest season we ever could have imagined, we have encountered some of the best of life and God’s goodness. Thank you, Lord!

A good-news oncology visit

We visited UCLA last week for Susan’s scheduled MRI and oncology visit with Dr Nghiemphu. The results were good, with continued tumor stability and evidence that the blood clot from January’s hemorrhage is breaking up. Susan has rebounded well from her most recent bout with infection, so the doctor is pleased with her overall improvement and has extended Susan’s scheduled MRIs to six-week intervals instead of monthly. Meanwhile, Susan will continue her physical therapy at home with her caregiver. I’ve noticed Susan’s alertness has improved a great deal since her infection cleared, although she still needs full-time assistance for daily living due to weakness and cognitive limits. We’re certainly grateful for the good scans this week and her continued respite from chemo treatments. We don’t know how long this quiet phase will last or how much function she’ll regain; but Susan is as committed as ever to getting well. As I lay her down to rest the other day, she apologized about needing so much help, but then she said she didn’t choose to be this way. I assured her it’s all okay. We’re partners, we’re in it together, and we’ll get through it together.

After Susan’s appointments were done on Wednesday, we walked to a little place for lunch called Café Synapse that serves delicious, fresh food and always is populated with medical students. As we approached the entrance across the street from the hospital, we noticed 3-4 police officers standing near each of several building entrances. I said we were there to eat at the café and asked if we could enter, and noticed some riot gear stashed inside the doors as we were allowed inside. I thought there might be a VIP visiting the building, but learned the police were there because of an animal rights protest happening a block down Westwood Blvd. I’ve read about previous protests against medical research on animals at UCLA and I knew about some violent attacks on researchers’ homes. While we ate, I noticed several small groups of protesters carrying signs as they marched on the street below, each tailed by a motorcycle officer. While searching a hallway for a restroom after lunch, we came into the midst of the protesters’ passion – a group of the university’s research labs, including one headed by one of the very brain surgeons who has treated Susan. Someone taped a picture of a lab rat on a door in what didn’t seem to be an act of protest but a symbol of the work they do there.

When it comes to the sanctity of life for animals, we have a spectrum with the extremes. On one end, there are those who elevate animals to equal or even surpass humans, like the protester with the sign reading “Stop Animal Terror.” On the other end, there are those who diminish animals to be unimportant or even disposable, like the kid with the B-B gun picking off sparrows. Somewhere in between are those who recognize animals’ importance and the sober cost of using them to rid humans of disease, like the other protester with the sign reading “Animal Research Cured My Mom’s Cancer.” Wednesday’s protest at UCLA actually was organized by a research professor who grew tired of being attacked. By the time Sue and I strolled down the block to the protest area, the pro-research protesters had packed it up, leaving the anti-research protesters making noise near the satellite trucks. Susan’s comment was observant – “There sure aren’t very many of them for all the attention they’re getting.”