Brian's Story

My brother Brian had a swollen tonsil (and sore throat) that did not go away. Doctors removed his tonsil, and confirmed the worst - that it was cancerous. On September 30, 2003, Brian was diagnosed with Stage II Non-Hodgkins Lymphoma (diffuse large b cell), the very same disease that killed my older brother, Buz, in 1992. Fortunately the cancer was caught early, and following 7 months of chemotherapy and radiation treatment aimed at his tonsils, Brian was told that his cancer was in remission. He was allowed to remain in the Air Force. We all thought the worst was over!

A year went by and my brother woke up one morning to find that he had lost feeling in his right leg. Since he was paranoid about any new symptom, he and his wife rushed immediately to the hospital. After looking at his MRI, the doctor told him lymphoma had spread to his central nervous system, making chances of survival pretty slim. Stunned, he and his wife tearfully phoned family members with the horrifying news. But after consulting yet another doctor, they were advised that the growing spot on his spinal cord and lower brain was actually "just" damage from the radiation therapy he received the year before. The doctors explained that something in Brian's DNA made him "hypersensitive" to the radiation he received (more than one doctor has commented that they had never seen so much radiation damage with such a low dose of radiation that was used), causing it to burn everything in its path: including skin, throat, spinal cord, vocal cords, and the base of his brain. Brian did not have a tumour on his spinal cord or vocal cords -- he had scar tissue. At first we were all ecstatic that Brian was still cancer free, but then the doctor gave us the details of radiation-induced nerve damage.

Since the radiation damage affected his spinal cord and usually takes a year or more to completely manifest itself, Brian was told that he would progressively get more and more paralyzed on his left side while losing feeling on his right side from the neck down. There was nothing doctors could do to halt the degenerative process and no way of knowing whether he would eventually be stuck in a wheelchair for the rest of his life (or worse). Months went by. Gradually he went from running 5 kilometres in 20 minutes to only managing 35 minutes to barely managing to run at all.

Now Brian can't run anymore. He walks with a limp. He is unable to use his left arm and hand. He eats and drinks via a PEG feeding tube. He had a promising Air Force career and had just received news he'd secured an elite appointment to teach at the Air Force Academy for his next assignment. But in 2006, following a gruelling, extended fight with its medical board, the Air Force informed him that he was to be medically retired.

Brian's struggle wasn't even close to being finished.

Radiation severely damaged his jaw, which doctors tried to mitigate starting in Jan 2008 with five jaw surgeries. Doctors begun by using muscle from his chest to re-vascularize his jaw area, using a titanium bar to attempt to reconstruct his jaw. Three months later they implanted a bone to replace the titanium bar - the bone required blood vessels which doctors hoped the muscle will supply.

On Jun 27, 2008 Brian endured yet more surgery to insert a PEG feeding tube into his stomach through a hole near his belly button. Doctors hoped the feeding tube would help him gain some weight since he'd been having serious issues getting enough calories due to nausea, choking, and his teeth being still wired together from jaw surgery.

Brian's teeth were unwired in July 2008, but he continued to experience trouble with nausea and choking. One of his doctors this year absolutely devastated us all by informing Brian frankly that he would most likely never be able to swallow or eat without the assistance of a feeding tube again.

Brian's days revolve around his "feedings". He needs preferably 2,400 calories each day, and has found that Ensure works best, both for his body's tolerability and for its convenience. Each can of Ensure is 350 calories, and therefore he requires 6 or 7 every day. On top of these Ensure feedings, he needs plenty of other fluids as well: he tries to get 3 "sittings" for water each day plus what he requires for his night-time pills. He can't combine any of these sittings/feedings - he has acid reflux and a very sensitive stomach. It all amounts to 10 or 11 feedings each day. Brian spaces his sittings/feedings 1 to 2 hours apart and has to try to be all done a couple hours before bed because anything else upsets his stomach.

Since Brian only has one working arm and couldn't therefore hold the tube while he was also pouring liquid through it, up until recently his wife Betsy had to feed him each of these 11 times. It was stressful and absolutely exhausting for both of them - Betsy had her hands already over-full with caring for their adopted daughter. Brian usually missed taking from 1-2 Ensures and 1-2 waters each day. Fortunately around June of 2009, Brian worked out a system where he sits resting his left hand on the edge of his table, and can grasp his feeding tube between his left thumb and forefinger while pouring the feeding in with the other hand. Still time-consuming, it was such a huge achievement and relief for Brian to be able to feed himself independently.

Then in Sep 2009, Brian was in Nashville at Vanderbilt Hospital seeing a swallow specialist when he decided to visit the ER. He'd been having increasingly severe headaches, and decided to get a brain MRI to check on the spot where radiation had damaged his brain. No fewer than a team of 20 neurosurgeons concluded that he now has water on his brain causing swelling and headaches (Hydrocephalus). They immediately prescribed a strong dose of steroids again and the headaches dissipated, but within weeks Brian was experiencing loss of vision. During an appointment at Vanderbilt on Dec 15, 2009, Brian's neurosurgeon told him that his loss of vision needed to be acted on to prevent him from going blind. At 7:30am on 31 Dec 2009, neurosurgeons will cut a piece from the back of his skull to allow room for his swelling brain. Brian not-surprisingly put a positive, humorous lilt on his upcoming surgery, commenting that compared to past 14+ hour surgeries, this one actually didn't sound too bad.

After all this hardship, he and his wife Betsy are still thankful, positive, and absolutely resilient. They consider themselves very blessed that Brian's paralysis didn't get worse than it already is (radiation treatment was what killed my older brother). They also are thankful they do not have the financial hardship which affects so large a percentage of cancer victims. They were unable to have children after chemotherapy, but after 6 years of fertility in-Vitro attempts and adoption setbacks, they were absolutely ecstatic to receive word they'd finally be picking up their little baby girl from China on July 23, 2008. The merciless timing of the event so soon after jaw surgery forced Brian to make the absolutely anguishing but completely commonsensical decision not to accompany Betsy to China - he was first introduced to his baby girl over video.

Brian and Betsy have inspired literally thousands of people. They raised $9,431 for the Light the Night walk organized by the Leukemia and Lymphoma Society in Colorado Springs on September 18, 2008 (his donation page is at http://www.active.com/donate/ltnDenver/2500_bdliebs). My brother was asked to give a speech at the event due to the fact he'd raised the most funds. His speech was extremely well received by the crowd, and inspired even more individuals to donate towards fighting cancer. Brian, Betsy, and Grace, their adopted daughter, were given a golf cart to ride at the forefront of the entire procession of participants, over 2,000 people who'd shown up for the charity event. They rode the 3 miles around downtown Colorado Springs with 6 motorcycle cops stopping traffic in front of them.

Brian then raised $4,408.33 for the Light the Night walk in Knoxville on October 29, 2009 (His donation page is at http://pages.lightthenight.org/tn/ETN09/bdliebs). He was again asked to speak, and honoured with participation in pre-race motivational speeches.

Brian has taken many more opportunities to lend his name and funds toward cancer awareness (although not as significantly) including most recently growing out his "mo" (moustache) for the month of "Movember" to raise money for men's cancer (Prostate and Testicular). Within the next couple years he plans to start organizing a trip down the Appalachian trail to raise more funds for cancer research.

Brian explains when he fundraises: My brother and I have a problem with our DNA that makes us more susceptible to radiation. Unfortunately, this is so rare that doctors never test for it. But with more research into the cause of blood cancers like lymphoma and leukemia and more localized treatment, future victims won't be as ravaged by chemo and radiation as we were. We all know someone who is affected by cancer, and I’m positive we can beat it if we work together.

The Air Force is paying for Brian to go back to school for his PhD, and my brother dreams to one day eventually teach at the Academy after all: as a civilian. He enrolled at the University of Tennessee this fall and despite getting winded walking to class, needing to manage tube feedings 11 times a day, and having to do all his typing one-handed, he received two B's and one A in his PhD level courses this fall.