I will not be able to capture the range, or the sheer number of people who have helped Bonnie regain her sight over the last 120 days, much less the hundreds who have helped us over the past 7 years, but just thinking of a few of them brings me a sense of relief. And relief from the ravages of the last 4 years is most welcome.
Bonnie stumbled into Dr. Kelly's Oak Island office on January 3, 2008 suffering with severe pain and dry eye due to her Graft vs. Host disease. Within 6 days Bonnie's left cornea had perforated. Dr. Kelly said he had never seen an eye deteriorating so quickly. He consulted with Dr. Cutler at Dana Farber Cancer Institute, to discuss Bonnie's Severe Graft vs. Host disease. He offered to take care of Bonnie in Wilmington given that it might be dangerous to fly back to Boston due to Bonnie compromised immune system. We asked him what he would do if Bonnie were his wife. He advised us to get on an airplane for Mass Eye and Ear that very day. We trust Dr. Kelly and we were on the next plane out.
We made it to Mass Eye and Ear emergency room the first thing the next morning and after 3 emergency surgeries Dr. Colby was able to save Bonnie's left eye.
Dr. Kelly had interned in Boston 30 years ago. We were lucky to find such a straight shooter. At Mass Eye and Ear they confirmed that rarely, if ever, does an eye deteriorate as quickly has Bonnie's had.
16 months later we entrusted Bonnie's only "good eye" to Dr. Kelly. He was open to consulting on Bonnie's medications and surgical details with Dr. Jacobs, a Graft vs. Host specialist at the Boston Foundation for Sight who also teaches at Harvard Med. Dr. Kelly removed the dense cataract in Bonnie's right eye and inserted a lens designed to allow Bonnie to read without glasses. It was amazing to watch Bonnie go from being legally blind to reading without glasses and well enough to pass her drivers license eye test.
In case you have not had to work closely with Doctors much, Dr. Kelly shows an unusual combination of skill and willingness coordinate with other surgeons, compassion for Bonnie's situation and suffering, a good sense of humor and patience to help us stay the course. And then there is Mary, his office manager, who reads Bonnie's weblog and prays for Bonnie. Mary saw to it that Bonnie had a pot of live flowers from Dr. Kelly when she came for her post-surgical check up. Here we have found North Carolina small-town familiarity, Boston-trained surgical skills and thirty years of experience.
When Bonnie was escalated from the Emergency Room to Mass Eye and Ear Emergency Surgery and Dr. Colby's care. She is a Top Gun surgeon at Mass Eye and Ear and a professor at Harvard Med. Dr. Colby is very observant, quick, straightforward and candid. She wears elegant designer shoes with her white coat. She pays attention to Bonnie and her subtle cues. Dr. Colby thinks out loud, 2 to 3 moves ahead, to keep us briefed, and by turns teaches the young doctors who follow her through all exams and surgeries.
In the emergency, Dr. Colby called the national eye bank on a Friday to get a cornea on an
airplane for surgery on Saturday, knowing that she may have needed to call in a favor, to ensure that a cornea would be found and arrive on time. Yet she easily delegates to others. She managed to get Bonnie to go to see Dr. Cutler when Bonnie had a fever. After the most recent sugery Dr. Colby sent Bonnie to see Dr. Jacobs when there was an abrasion of her epithelial cells. She has amazingly skilled hands. She is able to sit in an wheeled office chair and remove loose stitches from Bonnie's cornea with focus and ease, all the while briefing Bonnie and teaching her young doctor students. I figure she sees 5 or 6 pre-op or post-op surgery patients per hour.
Surgeons and doctors are only part of Bonnie's recovery. Doctors and nurses DO physical things to Bonnie's body. These interventions are frequently invasive and sometimes painful, and almost always an interruption. Bonnie did an amazing turn of mind by deciding she was in the hospital to improve her health and so each time the door opened it was not an interruption but time to get to work to get better, up and out. Surprisingly it worked much of the time, except when she was asleep, or her main symptom or pain was not yet solved and something else was being attended to.
Bonnie's family and friends provided a kind of comfort that was the opposite of the poking and prodding and the same litany of questions about symptoms. Friends provided comfort, quiet, care, prayer, cards, photos, messages about their projects, remodels, kids and grandkids.
Beanie Weaver would write in flowing copperplate script on cards offering prayers for Bonnie and other inspiring or funny stuff. It was clearly a bond they shared. Beanie was a student of Bonnie's at Penn State and they worked together
at Aetna Corporate Technology Planning. Beanie is a top notch
organizational consultant, and does "post care" for people in AA after
they do their detox. She fathoms suffering, pain and the needs of people moving to recover their lives.
Beanie would send me, cards in purple or green ink too, from time to time. Sometimes I could not deal with the fine thoughts being expressed as I pulled the mail out of snow covered box outside our apartment and went to clear the snow off of the car to get to Brigham and Women's Hospital. But Bonnie always wanted her daily cards from Beanie on her table near her. Sometimes too, she was simply too sick to read. So she stockpiled her beautifully scripted, and inspirational cards from Beanie and would read them when she was up to it. I would find colorful cards in my jacket weeks later that were touching by virtue of their handwriting and their sincerity. There are words and then there are deeds.
Beanie Weaver was our friend and host during our 2 week stay, in Boston for Bonnie's most recent surgery, which turned into a 5 week stay. When Bonnie and I staggered in with colds and then Bonnie had her eye surgery, Beanie took care of us in ways that were gentle, quiet, steady and kind. Folded laundry, quality dinners, wide ranging conversations, good humor and letting us simply retire to our bedroom. Near the end of our stay, Beanie hosted a "graduation party" for us when Bonnie's eye was mostly healed and I was ready to "graduate" from being Bonnie's full-time care giver. I have graduated to simply being Bonnie's husband. Cinderfella has retired.
And then there are Doctors Jacobs, Johns and Rosenthal at the Boston Foundation for Sight. Bonnie arrived as an Emergency patient (again) during the busiest week of their year. Bonnie's newly
transplanted cornea had lost part of it's epithelial cover three times in
three weeks. They were so attached to the person and patient that Bonnie is, that this caused them a deep sense of anxiety. We knew we needed their help, but were much more relaxed as we have been through so much, that we are used to emergencies. We estimated that it was unlikely that Bonnie would lose her eye, and if so, at least Bonnie had good sight in her right eye, which was not the case 6 months ago.
These dedicated doctors examined Bonnie's left cornea EVERY day for 3 weeks, including every day over a weekend.
Bonnie wants to unfold her story of working with these doctors and their skills and care, in saving her sight, in a separate post. For tonight, suffice it to say that without these dedicated human beings, the chronic pain in Bonnie's eyes would have been intolerable, regardless of any sight she may have retained without their Scleral Lenses.
Bonnie's Scleral Lenses act as reservoirs for liquid tears that she has to refresh in each eye every hour to keep the pain at a live-able level. Today these lenses keep Bonnie's corneas from "melting" due to her chronic graft vs. host and the pain that comes from have lost most of the function of her tear glands, and the ensuing Severe Dry Eye.
It is amazing when we are in BFS setting where you meet dozens of people with the same kind of eye pain. Some come due to graft vs. host disease or IEDs that damage soldiers eyes in Iraq, or a variety of eye painful eye diseases. Most of the people we meet there have searched the world over for relief from their eye agonies, and finally get dramatic relief at the Boston Foundation for Sight. There are now clinics that can fit people for Scleral Lenses in India, Japan, Los Angeles and Texas.
There are dozens and dozens other people from many walks of life who have helped Bonnie recover, but I signing off now go snuggle with Bonnie before she is deeply asleep.
/Daniel for BanD
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