Hope Has Many Faces
A RARE DISEASE
The story begins without hope. In 2004, after showing symptoms that went undiagnosed for two years and after visiting four hospitals, Robert Tydlacka went to MD Anderson. He was diagnosed with Bing-Neel Syndrome a cancer so rare that he was the first case ever at the world-famous cancer hospital.
Putting it in layman's terms, his wife Diana explains that this is a cancerous protein in the spinal fluid that is like leukemia/lymphoma combined. When he was diagnosed, he was Stage 4 and given weeks to live and told to get his affairs in order.
"I can still remember the day we were told," said Diana, a retired middle school principal. "There were two doctors and one, Dr. Michael Wong, is still with us. He developed a protocol, injecting chemotherapy directly into Robert's brain through a port."
The average expected lifespan at the time of diagnosis was 76 months and to everyone's shock, Robert lived and has been in remission for seven years. Since then there have been about 200 cases reported around the world.
"One of the consequences of the chemotherapy is that it weakens the tissue," Diana continued in her matter-of-fact voice as she describes this traumatic time in their lives. "But the Robert that I married, the witty man who used to be in management with Nalco-Exxon was back and we returned to normal."
FACING DEATH AGAIN
In 2008 disaster struck again and once more, the situation seemed hopeless. Driving home from vacation and two hours out of Houston on I10, Robert collapsed in the car due to a spontaneous brain bleed, further complicated due to the blood thinners he was taking.
With Life Flight® on the way, Diana, her niece and their friend in the car practiced CPR but, as Diana points out, "he was gone."
They took him to Memorial Hermann and kept Diana informed of his progress as she sped to the hospital. Upon arriving, they took her directly to the conference room. The neurosurgeon met her there and told her that he was still alive but with very little chance of survival. He assured her that they would try everything to save him but we believe that this is a traumatic brain bleed.
"I walked out to ask him one more question and they were wheeling Robert down the hall at a run, doing CPR at the same time. There were tubes everywhere and they were pumping oxygen."
"I remember the surgery being very long, maybe four hours. When the surgeon came out, his first words were that he survived. Then the bad news: they believed that he would not continue to survive and that if he did, he would be in a vegetative state. Robert had had two brain injuries, a devastating prognosis. He was put in the NeuroTrauma ICU for a week on a cold bed to keep the swelling down on his brain."
As time passed, there was no improvement and then, Diana continues, "The critical care doctor wanted to meet with me in THAT conference room AGAIN!" Even after so many years you can still hear how much she dreaded that room. "He told me that I needed to make a decision to take him off life support. I told him that I needed time to talk to the family and I couldn't make a decision right now."
"I made two calls: to our family and to our pastor. Our family said it was up to me and our pastor sent two parishioners early the next morning. We asked the hospital to allow us all in to pray over Robert. As we put our hands on Robert and prayed, Robert opened his eyes. The doctor came running!"
"Our pastor always says that when you ask God you will always get an answer. Not the one you want maybe, but an answer."
THE HARD WORK OF RECOVERY
In the next few weeks, Robert was moved out of ICU to a room on the floor and then discharged to the ICU of a skilled nursing hospital. He had movement on his right side and could move his finger on command. He could make sounds once they capped his trachea and could breathe on his own. It was time to
discharge Robert from the skilled nursing hospital and Diana wanted to take him home but the hospital refused, insisting that she should put him in a nursing home. Diana brought Robert home.
"This was 2009 and the major rehabilitation hospitals were all refusing to help Robert. They said that he was a non-participant. I believed that we could do this."
Realizing that she needed help and having to go back to work, Diana hired a retired LVN to come live with them during the week. Home health was great but once more, the occupational therapists and speech therapists bowed out when he plateaued. Physical therapy held on a little longer but then felt that he had plateaued as well and gave her the exercises to ensure that his muscles would not atrophy.
"I asked the therapist what could I do to make him better and then I bought all the equipment and started to do research online," said Diana. "At this point Robert was breathing on his own and eating through his mouth but I wanted him to be able to stand and roll. I wanted to know what else was out there so that he wasn't always in bed and we continued to work with Robert daily."
FINDING HOPE IN A CLINIC
In August of 2012, Diana requested in-clinic therapy at Physical Therapy Care and Aquatic Rehab of Fort Bend. "I wanted the best for Robert and I knew Patti and Robert knew the clinic. He had been here three times before, twice during chemo."
"I specifically chose Patti and Keith only to work with Robert. Patti is innovative and she and Keith make a great team because they are very direct with Robert and that is what he needs. We are seeing a constant improvement, sometimes with a setback or a plateau but he is getting better. Whatever they do here, I do again at home."