June 3, 2000 -- Farewell, Kristyna
Kristyna was a young woman we met at Shannon's House. She had ALL -- Acute Lymphocytic Leukemia -- a very aggressive form of leukemia. She was diagnosed in December of 1999, and underwent treatment to put her leukemia into remission. It worked for a short time, then it came back. She decided to undergo a bone marrow transplant -- her only real option.
Kristyna striking a pose to give me the best view of her purple ribbon bow.
When we arrived at Shannon's House in March, Kristyna had already been there for a couple of months. She was undergoing chemotherapy and waiting to find a donor -- she had no matched siblings. During her treatment, she would have good days and bad days, as most chemo patients do.
Kristyna was mostly bald -- she had maybe 1/8" of hair. She had a little bump on her head where chemo would be administered to her brain to prevent the leukemia from spreading there. She didn't try to hide her baldness. Instead, she would put a little purple ribbon bow on the bump when she was going out. It was her way of dressing it up.
Life at Shannon's House could get boring -- especially if you were a patient waiting -- for treatment or cure or admission to the hospital. One of the "highlights" of our day was when a car would block the driveway to Shannon's House, and we would have the car towed. Sounds mean, I know, but hey, the days could be pretty slow!
Anyway, there were a few occasions when the drive would be blocked, so I'd run in and tell Kristyna. She'd get all excited and call the police. They'd come and invariably tow the car (they did attempt to find out who the car belonged to, and if it was someone local, they'd ask them to move it). Some time later the unsuspecting car owner would return, and Kristyna would watch them for a few minutes from the front window, talking at them the whole time, even though they couldn't hear her (she talked to the TV, too), then go out (or they would come to the door to ask about their car) and tell them their car had been towed. She would say, "You know, this is a house for cancer patients, and sometimes we need to get to the hospital in a hurry, and if the driveway is blocked, we can't get out." The people would always look guilt-stricken, for here was this bald woman chastising them about blocking the driveway. Then she'd come in and we'd chuckle about it. She wasn't at all mean or vindictive about it -- more it was a way to add a little excitement to the long days.
Kristyna appreciated life. She had lots of friends who would call and come to visit her. She cared about everyone else at Shannon's House, and when Dave was released from the hospital, she told him she was so glad to see him, and she hoped she went through the whole BMT process as smoothly as he did. He and Bruce, another BMT patient staying at Shannon's House, became her inspirations (Bruce also came through his BMT well, despite some major bumps in the road while he was hospitalized).
Kristyna was given something like a 10% chance of surviving the bone marrow transplant. Because of the aggressiveness of her disease, she entered the hospital with an already weakened immune system. It was going to be a rough road, but we all knew she would come through fine. She was a fighter. She hadn't come this far to die now.
She was admitted to Brigham and Women's Hospital in mid April, and underwent her BMT a week or so later. She had a rough road. The radiation burned her skin, the chemo made her sick, and she developed an infection from her Hickman lines. Once the lines were removed, she started feeling better, and seemed to be on the road to recovery. Then, on May 23rd she was moved to the ICU unit because she was having trouble breathing, the result of a then-unknown lung infection. A few days later, they put her on a ventilator because she could no longer breathe on her own. The doctors determined that her infection was CMV -- cytomegalovirus -- a virus that about half the population has in their bodies. In healthy people, it usually manifests itself as a cold. In an immunosuppressed person, it can cause pneumonia, which is usually fatal.
Still, we believed Kristyna would pull through. She was such a fighter. And because things went so well with Dave and Bruce, we (or maybe it was just me) were lulled into believing that bone marrow transplants are practically a routine procedure, and that the medical staff at B&W could take care of any situation that arose. But as good as the doctors and nurses are, and I have immense respect for them, they're only human. They did all they could for Kristyna, as they do for all the patients. Some things are just bigger than all of us. Or maybe badder, like CMV.
Kristyna was going to go to Disneyland when she was better. My sister Lois sent her mouse ears with Kristyna's name embroidered on them and a T-shirt so Kristyna could have them in her room and think about going to Disney when she got out of the hospital.
On June 2nd, Kristyna was removed from the ventilator. It was her wish to not be kept alive by machines. She was surrounded by her mother and father, her partner Lisa, and some close friends. She was 28 -- she had celebrated her birthday in the hospital.
We only knew her for a short time, but she touched our lives, and the lives of everyone who met her. She taught us lessons in courage and perseverance, and overcoming the odds. Her passing helps us to once again put things in perspective, to realize what really are the important things in life.
Our hearts go out to her family, and especially Lisa, who has been burning the candle at both ends for several months now, working in Provincetown, and getting to Boston as much as she could to be with Kristyna. It has been a long road, one I wish had a happier ending.
We'll miss you, Kristyna.
Allison