Chris was a normal superkid until Sept. 21, 1981, when he was 14. After a routine ophthalmology exam, he had been found to have a brain tumor. He underwent major brain surgery at Children's Hospital in Washington; Dr. Katherine Hammock was the surgeon. The operation lasted many hours because the pathology kept indicating that the mass was not tumorous. It turned out that it was a "tuber," a symptom of tuberous sclerosis, a disease he was born with but that never had been evident. He may have never had a problem except that the tuber in his brain attached itself to a blood source and was growing. At the core of the tuber, as I understand it, they later found a giant-cell astrocytoma, more like a real tumor, which seems to be related to tuberous sclerosis. So he also had to be treated with radiation.
The operation apparently triggered a stroke. He was left paralyzed on his right side and with major problems with his speech. He was in Children's for about two months. After that he went to a children's rehab hospital associated with the University of Virginia hospital in Charlottesville, where he lived for several months. After that he attended a special school in Virginia, the Accotink Academy, for a year, commuting from home. He then re-entered Montgomery County public schools and attended Walter Johnson High School for about three years, in its special education program, and received a diploma in 1986. He then spent time in several other programs - one connected with Johns Hopkins in Baltimore, a brain trauma institute in Potomac, the Treatment and Learning Center in Rockville, etc. Finally, in 1992, he was accepted by CHI Inc. - formerly called Center for the Handicapped Industries - in Silver Spring, a shelter workshop for the disabled, which became his day program for 25 years.
Over the years Chris has undergone quite a few other operations. He had an orthopedic operation early on - 1983? - to reposition his right foot, to allow him to walk without a cane. He had a number of operations to repair his shunts - he had three shunts carrying liquid from his brain to his mid-section, and if they got clogged, he could have seizures. He had other surgeries to remove the shunts, and a gamma knife procedure to block a recurrence of the tumor. Most of these procedures led to more setbacks in speech,walking, eating and general intellectual ability. And over the years he became increasingly hard of hearing - probably because of the radiation treatment - and needs to wear an amplifier with earphones.
Chris lived with me in Potomac until 2000. He was still fairly independent - could get up by himself, get dressed, even get his breakfast and meet the van to go to CHI. He had a caregiver from the Kennedy Institute who visited a couple of times a week and did things with him. Chris often talked hopefully about getting his own apartment, and the caregiver said he would like to become Chris's first roommate and help with the transition for a year or so. We found an apartment on New Hampshire, and the two moved in. It was wonderful for Chris. He was fairly independent, but had a helpful roommate to help with cooking, chores and emergencies. After a year, we were lucky to find Alex Crespo for his next roommate. She lived with him and helped him with anything he needed for several years.
Around 2008, he rather suddenly began having more trouble talking and chewing/swallowing. Doctors thought it might have resulted from a small stroke, or possibly a long-term reaction to the radiation or drugs that he takes. After a while he essentially stopped talking - it became so hard for him to form words that no one could understand him.
In late 2009, an MRI showed that Chris's tumor had reappeared. I couldn't imagine putting him through another major brain surgery. Fortunately, his neurosurgeon - Dr. Jacobson, who as a resident took part in Chris's original operation - recommended the gammaknife facility at the Washington Hospital Center. So in the spring of 2010 Chris underwent the gammaknife procedure - intense doses of radiation aimed at the tumor. It wasn't much more complicated than an MRI.
Chris was able to walk out without any apparent complications
After that procedure, however, Chris began having more setbacks. His chewing and swallowing became even more difficult, sometimes leading to choking; he was much more wobbly when walking, fell much more often; two sores developed on his head, often oozing pus; and he became partially incontinent - he wet the bed virtually every night, and occasionally in the daytime.
So in the summer of 2010 we began making the rounds of several doctors - neurologists, dermatologists, GI doctors for his chewing/swallowing, a PT for his walking, etc. Soon Chris spent several days in Holy Cross hospital, where he was examined by a team of neurologists, dermatologists (for the sores), OTs/eating disorder specialists and others. They didn't turn up with much that they could do. They recommended seeing his regular doctor and neurologist and possibly other dermatologists for the sores. But no one came up with any answers.
As of late October 2010, the sores were frequently oozing, he was still falling and still unable to chew. Dr. Jacobson agreed that we should check Chris in to a hospital for a more thorough checkup. On Nov. 4 he entered the Washington Hospital Center, under Dr. Jacobson's supervision, and a team of doctors and specialists went to work. The main finding was that Chris had a major infection in his brain and in other parts of his body, basically a form of meningitis. They injected massive antibiotics into him for days, they removed the old shunts that had been in place for 25 years and were apparently not doing anything helpful (AND were highly infected), they performed some plastic surgery on the sores, covering them with a skin patch from his thigh, and they tested his chewing and swallowing. For days he basically shut down; he was even fed by a tube through his nose. But he slowly began recovering, and right after Thanksgiving he was transferred to the National Rehabilitation Hospital across the street.
There they focused on PT (walking, mainly), OT (daily chores) and speech therapy, which included eating. Soon the PTs were helping Chris walk down the hall, with a cane. But he still couldn't speak, and was unable to eat solid food.
In January 2011 Chris was transferred to Manor Care in Bethesda, a nursing home/rehab center. There he received only a couple of sessions of therapy a day. He began wheeling around the place in his chair, making friends even though he couldn't speak. They could feed him only highly pureed food, and all liquids had to be thickened to avoid choking.
He was discharged from Manor Care around March 1, 2011 and went back to his apartment. It was clear that Alex could no longer take care of him. So we found Oswaldo Aguilar (thanks to our friend and guardian angel, Carmen Suarez). Oswaldo became Chris's full-time caregiver - preparing his meals, getting him to the CHI van every morning, walking him several times a day and generally helping him improve. He also had Kennedy Institute aides helping - visiting Chris a couple of times a week and giving Oswaldo a break.
Oswaldo was a wonderful caregiver, but after a few years we came to realize that Chris needed more than a single person to count on - he needed an organization with deep expertise and a strong infrastructure. We were fortunate to connect with the Jewish Foundation for Group Homes, and in October 2014, Chris moved from his apartment into a group home in Silver Spring.
2015 Setbacks
In January 2015 Chris began having more trouble walking and eating even pureed food. He was checked in to Holy Cross hospital, and after a few days - when he became almost unable to function at all - they found that Chris had been suffering almost constant silent seizures in the front of his head. They put him on a strong anti-seizure medication, which essentially put him into a coma. As he recovered he transferred back to the Manor Care facility in Bethesda, where he stayed from April through October - receiving PT, OT and speech therapy for eating and slowly improving.
But the damage had been done. He never recovered his ability to eat anything by mouth and must be fed by a stomach tube. He lost the use of both legs. His left arm and hand were usable, but had limited range and fine motor skills. He became totally incontinent. And his intellectual ability took another hit.
In late October Chris returned to his group home, which was able to adapt to his new needs. He was able to enter a different day program that worked with the more disabled, CHI Twinbrook, where he was taken by Metro Access in a wheelchair van.
2016 Setbacks
Over the next few months his setbacks continued. Chris slowly began losing the use of his one good arm and hand, on the left side. And he became more and more lethargic, sleeping most of the time and rarely responding. So in March he was taken back to Holy Cross hospital. An MRI showed a new growth deep in the right side of his brain (which could account for the loss of control of his left arm). He also had a low sodium level, which can affect the brain and cause serious drowsiness. Over several days they were able to increase the sodium levels. Chris was able to go back to the group home and his day program. But he had no use of his left arm - or anything below the neck - and he still had the undefined growth in his brain to monitor. A new MRI in late April revealed no additional growth, so it may not be a tumor - still unknown. It seems possible that he suffered a small stroke, leading to the loss of the arm, or the growth in the brain may have caused it.
In 2017 it became clear that his day program did not have any services that were appropriate for him. In addition, the transportation back and forth by Metro Access was taking its toll - sores on his feet and legs from scrapes in the van, and occasionally an upset stomach from the stop-and-go. So we applied for permission to have him remain in the group home in the daytime. CHI had been wonderful for him for 25 years, but now he gets the individual attention he needs at the JFGH group home. They take him to his doctor appointments and to occasional social events, usually with other JFGH residents. Otherwise his main activity is watching his favorite movies, or anything else on TV or DVD. He doesn't really respond, so it's essentially impossible to tell if he recognizes anyone, or understands what they say.
2022
In April of 2022 Chris was suddenly breathing hard and fast and sweating much more than usual. He was taken to the ER at Holy Cross, and they diagnosed a partial heart blockage. They would not do anything invasive, of course, but gave him some new meds for the heart condition. He went home three days later and seemed normal. A hospital doctor suggested that we look into hospice or palliative care. From what we learned, his current treatment is very similar to palliative care - no invasive procedures or artificial resuscitation. But he does go to the ER when needed, mainly to replace his stomach tube if it comes out.
In July, a housemate who has a day program tested positive for Covid, and so did Chris. He tested positive again a week later, and another time. And then around Aug. 25 he and the others tested negative. So we had a long-delayed birthday party for him - just Evelyn and me - in his room on Aug. 27. He was extremely tired and sleepy. That night he had blood in his stools and a very rapid heart beat, so he was taken to Holy Cross - and he again tested positive (apparently unrelated to the symptoms). It turned out he had been bleeding internally, possibly from his stomach (after bad constipation) or from an ulcer. They gave him 3 units of blood and monitored him for two days. They thought they might recommend an endoscopy, but saw no more evidence of blood - so I didn't have to face the decision of whether to put him through an invasive procedure. He went home on Aug. 29, and seemed normal.
Throughout it all, he has been lucky to have had excellent care from his home and day program, and he was always upbeat and relatively happy.
