Abby Beats Serious Acute Aspergillosis and Leads a Normal Life
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In 1999 leukemia patient Abby Rosen received news that was difficult to take, she had developed an invasive aspergillus infection that had spread to her brain. The infection was so serious that she had to endure the removal of part of her skull (craniectomy) to prevent damage caused by swelling of her brain - it essentially gives the swollen tissue somewhere to go to and prevents the brain tissue being crushed by the buildup of pressure.
Treatment for leukemia causes a severe reduction in the effectiveness of the patients' immune system until it recovers from the first stage of chemotherapy treatment. This gives infectious agents including aspergillus fungi a 'window of opportunity' that they are more than happy to climb through.
Bacterial infections are common in this situation but antibiotic treatments are so effective and plentiful these do not normally cause too much of a problem. Fungal infections such as aspergillus are a different story.
Fungal infections have to be treated using one of a limited number of antifungal drugs. Some of these are quite toxic and cannot be used for some patients e.g. those with impaired kidney or liver function. This cuts the choice down further. More modern antifungals tend to be very expensive which can make then unattractive to use! On top of all this there is difficulty getting antifungals into the brain as there is a blood/brain barrier that prevents easy passage of drugs into the brain. How do fungi cross this barrier? It isn't really known for sure but one possibility is that it simply grows across it using the ability of its hyphae to 'push' through tissue.
All of this sounds like there is no hope, surely any patient faced with these odds might as well give up?! The happy answer is NO not at all. 12 years after suffering from cancer and this major infection Abby is back at work as an accountant and has been for the last 6 years. Thanks to the treatment she received she recovered, regaining so much of what was lost that on November 21st 2010 Abby was married to Andy and has spent the last few weeks on honeymoon in Hawaii.
Abby's mum Sandra commented:
- When my husband first contacted Dr. Denning in 1999 and he told him about a five year old boy that had survived aspergillus that was a great deal of encouragement for me. I hope Abby's story of hope and success will help other families who are in need of that encouragement. It is an amazing story to be told.
- I have to say that it was a long journey to get to where she is today. One can't imagine how delighted we all are that she is with us and how much progress she has made after her brain injury. She is still improving daily. There definitely is a life after cancer and a brain injury.
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The Power of a Legend
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Boston, May 1995. The last days of my clinical fellowship were like a heavily loaded lorry driving up a steep hill. I was emotionally exhausted and physically drained—one needed a lot of moonlighting to survive in Boston. I was also preoccupied with thoughts of my research transition into the high-power genetics lab.
Shaun was sad and angry. He had leukemia and aspergillosis. Only 14 years old, Shaun had no visitors. As the days passed, he slipped more and more into a depressive defiance of his caregivers. I felt sorry for Shaun but found little time for him as I struggled to get through my busy day—a Sisyphean task of endless consults, follow-ups, sign-offs, and more consults. But one day, I lingered at Shaun's bedside. I had seen his eyes wet and asked him why he was so down on that particular day.
He said simply, “Doc, nothing's going well in my life, and to top off everything, the Bruins lost last night.” This was a thread for communication between a sick teenager and a busy clinician.
Are you a Bruins fan?” I asked.
“Big time,” he replied. “I miss the days when I went to the games with my friends.”
A flash of an idea came to my mind.
“So, Shaun, if I bring you a big Bruins player, will that cheer you up?”
“Oh yeah, who are you going to bring me? Bobby Orr?” he said sarcastically.
Who's Bobby Orr? I thought to myself. My European upbringing and lack of knowledge about ice hockey made me appear alien when I asked that question to the secretary in the infectious diseases department.
“What's wrong with you?” she replied with her heavy Boston accent—almost as heavy as my Greek one. “You don't know about Bobby Orr? He's a legend here in Boston.”
“Well, find his number for me, please,” I asked.
But, when I called him, he was in Canada. I left a message with his secretary explaining the situation and my request.
Three weeks passed. I had forgotten all about Bobby Orr. Shaun remained hospitalized, as depressed as ever.
It was around noon on Memorial Day weekend, I remember. I was on call and very busy when I received an outside number on my beeper. I called back.
“Doc, this is Bobby Orr. Sorry I am late getting back to you, but I was out of the country. How can I help you?” I was stunned and pleasantly surprised. I started explaining Shaun's situation with increasing excitement.
“Doc,” he said. “You talk too much. Tell me where Shaun is, and I'll be there in an hour.” Shaun was scheduled to have a CT done on that day, but he had refused it. He lay in bed curled up, disheveled. I canceled the CT and asked the nurses to ready him for a surprise visitor.
Bobby Orr came in, loaded with posters of the Bruins. The nurses' station buzzed, and I began to sense just how great a legend this man was. Bobby stayed with Shaun for over an hour, one on one, on that Memorial Day weekend afternoon. They talked and shared stories about hockey. Shaun was the happiest that I had ever seen him—all big smiles, living a dream. I was incredibly moved. Eyes wet, I proceeded to thank Bobby Orr. He looked like a battled, proven warrior, scarred and tough.
“Thank you, Mr. Orr. I will never forget what you did today for that kid.”
“No. Thank you, Doc.” His eyes were also wet.
Shaun died a month later of relapsed leukemia. I moved on with my career, pursuing my profession while also trying to keep up with a busy family life. I never saw Bobby Orr again, but I'll never forget the great generosity of this legend and the immense effect he had on Shaun's life—and mine.
- Dimitrios P. Kontoyiannis, MD, ScD
+ Author Affiliations
From The University of Texas M.D. Anderson Cancer Center, Houston, TX 77030.
One man gives freely, yet grows all the richer; another withholds what he should give, and only suffers want. A liberal man will be enriched, and one who waters will himself be watered.
Proverbs 11:24–25
Originally published in the Annals of Internal Medicine
- On Being a Doctor
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Awareness by Liz Smith
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Aspergillosis a relatively unknown condition,
Sprung out of the blue and into our lives, changing them forever.
Our beautiful Steph, 21 years old, with a zest for life,
A primary teacher, gifted in her profession,
A vocation so suited to her and was all she dreamed of
Then, only three months from graduating ~ gone forever
Taken from us with such cruel and little warning.
THE HUNT by Billy Roberts
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The early morning mist rises with shame, to reveal the flash of crimson coats.
No idle chatter from the hunters' lips can conceal the deathly smiles, nor magic away the guilt that is yet to come, but even now is felt.
Excited hounds, hungry yet fed, filled with eagerness for the chase, mingle with impatient horses whose frozen breath disappears with the rising mist, but still the guilt of the hunters' deathly smiles remain.
Already the blood of the hunted flows, but only in the minds of the hunters, as they rub the cold from their frosty hands and don their caps with pride.
The misty sky reveals a curious sun, who peeps slyly, then retreats with shame, as the signal is given and the hunt begins, but for the hunted it is already over.
A wide-eyed creature stares from the safety of the hedge, but its safety is soon to be broken by the crimson coats, howling dogs, sounding horns, and horses at a gallop, but led by the hunters' deathly smiles.
Confusion! And with hesitation, the gentle creature surrenders. No prisoners taken in this gruesome war, as a curious sun peeps once again, and with outstretched hands the crimson coats congratulate each other; but the hunters' deathly smiles slowly disappear, and the crimson coats turn to coats of bloody shame.
The journey home is always dark, but only in the minds of the hunters.
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THE OLD DIPSOMANIAC by Billy Roberts
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Face lined and drawn; his soul eaten with the sad prospects of an alcoholics dream.
NOVEMBER THOUGHTS by Billy Roberts
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By the window I sat watching the November sky,
After the diagnosis by Christian Wiman
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Christian Wiman, "After the Diagnosis" from Every Riven Thing. Copyright © 2011 by Christian Wiman. Reprinted by permission of Farrar, Straus and Giroux.
In Appreciation of the Carer
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We are so often ill, our breath coming in gasps,
We fear for ourselves, plead for mercy,
Those breaths we take fight us with wheeze and rasp,
Our plight is hard; our mood is hard and bitchy.
But wait a moment; pause a minute, look around, do you see?
Those that love us, care for us, nurse us and stay by our side,
Those loved ones, siblings, partners or spouse, standing closely,
Holding our hand, mopping a brow, hiding how they cried.
So while we suffer, puff and pant, do not grumble, do not rant,
There is strength beside us, a hand to support, an ear to listen,
Our loved ones who watch us suffer without showing a tear,
Our life is hard, full of despair, but do we see the eye that glistens?
My wife is my rock, my oxygen mask, my faithful nurse,
I am lucky, I’m not alone, I have someone who cares,
Suffer we do, often it’s true, but don’t moan, don’t curse,
One of us is ill but both feel the pain, the suffering we share.
Friend or family, brother or son, husband or wife,
We all must remember those who hide their tear, hide their pain,
They sacrifice their hearts, to accompany us in our plight,
So keep in your hearts a smile, for those who love us, with nothing to gain.
Chip Chapman, August 2014
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