Here is an update from Stephanie that was posted on Facebook.
Lee Harris update, February 2, 2019
Day 21 in Baltimore. Day 18 since first surgery. Day 10 since second surgery.
Happy Groundhog Day. Phil predicted early spring, and I can say Amen to that.
Lee is doing better day by day. He's had some rough moments, but is more stable now, physically and emotionally. He can't walk yet, but is strong enough to stand and transfer. He can move his left arm, hand and leg, gaining more function daily. His diagnosis was glioblastoma grade 4. He had two surgeries, the first to remove the tumor, the second to remove an abscess (infection) from the first surgery.. He is on IV antibiotics (Cefepime) for a few more weeks. The culprit was a bacteria called Klebsiella, normally found in the gut. How it got into his brain is a good question.
It took us awhile to decide on his treatment plan. After weighing all the options, we decided to continue with Johns Hopkins for rehab, chemo, and radiation. It will mean two more months away from home. He can keep the same teams, which is great. We are currently in the neuro unit, waiting on a room in Meyer 7 rehab, hopefully next week. He goes for mapping for radiation on Tuesday. Radiation and chemo (a pill), will be given simultaneously. He will begin radiation the week after next, for six weeks.
After that, we anticipate coming home. He will be on a chemo regimen for another six months, five days in a row out of every 28 days. He will get MRI's every two months. We will need to find an oncologist, probably in Tulsa. The teams here are researching neuro oncology doctors in our area (Kansas, Missouri, Oklahoma). They mentioned going to Wash U in St. Louis, or Kansas City, but that would be pretty far.
Some of you have wondered what I am doing or where I am staying. I am staying in Lee's room. There is a couch that folds into a twin size bed. I can use his shower and bathroom. They anticipate Lee being in rehab for three weeks. At that point, he will still have three more weeks of chemo and radiation. They are working on setting us up in their Hope house, at no charge, so that would be wonderful. I will also be able to stay in his room in rehab.
There are plenty of food options in the hospital. They have a food court. I can order a guest tray for $8.00, but I've only done that twice. I prefer to go the cafeteria, or get food from one of the restaurants, such as Subway.
But mostly I've enjoyed the food brought to us by our old JBU friends that live in this area, Marsha Wilson Smith and her hubby Bruce, and Charlotte Beeson Burkhardt and her hubby, Jim. Between them they have brought in yummy soups, ham and beans with cornbread, and containers of all kinds of snacks - fruit, cheese, lunch meat, chips, cookies and more. This taste of home has been wonderful, and we enjoy their visits. They also brought books. It was an unexpected blessing, for sure. There is a small family room with a fridge, microwave and coffeemaker I can keep food in.
Our daughter-in-law Chelsea Lanie Bell Harris sent us a care package with snacks and LifeWTR which I have enjoyed having. She also set up a gogetfunding account, to which so many of you have given. We never in a million years expected to find ourselves in this position. It is humbling and overwhelming to see the support in prayers, thoughts, and financial donations that has been poured out to us. Lee has wept many times reading your texts and posts, and seeing that funding page. He said "that's not supposed to be me", and I agree. But it's not supposed to be anyone.
We never know why these things happen. We have seen God's guidance through all of it. It's an amazing story so far, and I don't expect that to change. We are strong, and have faith. There are changes coming for our entire family, so we continue to cherish your love, prayers and support. Thank you all from the bottom of our hearts. We are humbled and grateful. We love you guys.