Another Speed Bump — October 15, 2000
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Our stay in Houston has been further extended by a completely unexpected infection that has made the last ten days very difficult and painful for Kim.
Following Kim's last bout of Graft versus Host Disease we remained in Houston to complete a course of medication that was administered once a week over four weeks. We had been making the most of our time in Texas. With only two hospital appointments a week we had some free time and Kim was feeling well enough for us to go out to eat a few times and get in a little shopping.
Just over a week ago, Kim began to complain of a headache that seemed to affect the right side of her face. The pain was so great that her doctor ordered a CT scan to see what was going on. The scan showed that Kim had a sinus infection in her sphenoid sinus cavity, the sinus located in the center of the head, behind the optic nerves and just below the brain.
Over the next two days the left side of Kim's face began to swell in several places and her pain grew worse. The painkillers and antibiotics she had been given following the CT scan were not working. When the pain became unbearable we checked into to the hospital.
Once admitted, tests were run that indicated the infection in her sphenoid sinuses had begun to spread to the surrounded bone area.
The decision was made to go forward with endoscopic sinus surgery immediately to open up the infected sinus cavity and determine the nature of the infection.
Thankfully, Kim's surgery went well. Kim's father and I met with he surgeon afterward and discussed his findings. The infection was in several of the sinus cavities. The left sphenoid was completely blocked and severely infected. The doctors drained the sinuses, removed some infected tissue, enlarged the openings and, in some cases, eliminated the bony areas that separate many of the sinus cavities.
The surgeon said that visually the infection did not appear to be fungal. That news provided a tremendous amount of relief. A fungal infection in that area is very serious. Samples were taken from the material that was drained. Initial pathology reports do not suggest leukemia or even a fungal infection. Over the next four or five days we will hear the results of various cultures that will try to pinpoint the type of infection.
It's not clear yet how long Kim will need to be hospitalized and how long afterward the doctors will want to see her on an outpatient basis. The diagnosis of the infection and Kim's recovery time will obviously play a very large role.
We feel very lucky to have received such exemplary care and that Kim's doctors were able to find and treat this infection before her condition became even more serious.
Kim is still exhausted from the experience, but her improvement from one day to next has been impressive. As always she is incredibly upbeat and greets each nurse or doctor with a bright smile and a big hello.
As always, we thank to all for your continued love and support.
All our love, Brian and Kim
A Humbling Month — October 4, 2000
September brought us a splash of reality as to the seriousness of what Kim has been through and the delicate nature of her recovery.
The month began well, with Kim's health continuing to improve. We talked frequently about our plans to return to the Northeast and renew the lease on our New York apartment. Over the Labor Day weekend, we even hosted a barbecue and invited friends and family from the area. Two of Kim's close friends flew in for the weekend to join in the festivities and help us prepare all the food (thank you Molly and Marni!).
The following week Kim received her monthly infusion of IVIG, or intravenous immune globulin, an immunizing agent used to prevent illnesses that can occur when the body does not produce enough of its own immunity. In the past, this infusion has made Kim feel pretty lousy for a few days. This time, the lousy feeling continued and got progressively worse over the course of a week. We consulted Kim's local oncologist and went in for intravenous hydration and anti-nausea medicines. Continuing to feel awful, we checked into Sarasota Memorial Hospital. Upon consulting the doctors at M.D Anderson, it became fairly certain that Kim was experiencing an acute flare-up of Graft Versus Host Disease. On the morning of September 15, we checked out of Memorial and boarded a plane to Houston.
Once at M.D. Anderson, Kim was admitted for a full week. Within a day of her arrival, Kim was given a new port and began receiving high-dose steroids. On the 18th, Kim underwent an endoscopy and a colonoscopy. Biopsies taken tested positive for GVHD and confirmed the diagnosis. The steroids were administered intravenously for a full week before we were discharged from the hospital as an outpatient. In order for the doctors to taper the level of steroids more quickly, Kim is receiving Infliximab, a steroid-sparing agent. Infliximab is administered once a week for four weeks, insuring our month-long stay in Houston.
This setback was very humbling for us. Kim's health had been so good that we had been making what now seem like very ambitious plans. We had plane reservations to fly to New York City on September 18th for a weeklong visit (our first in over a year), and we were planning on re-signing the November 1 lease on our apartment. Obviously neither of these happened.
Further, Kim's transplant doctor recommended that we hold off on any plans to return to New York until after the winter. The doctors have made it clear that Kim will probably experience similar setbacks over the next year or two. At this point, we are told, one either has GVHD or Leukemia; we'll take the GVHD. In fact, Kim had a bone marrow aspiration during her stay in Houston and the initial results show that her marrow and blood remains leukemia free.
The steroids that are so important in squelching the immediate problem have brought on their usual nasty side effects: Kim's face has begun to swell, the muscles in her legs have broken down, and she is too jittery to sleep. As the steroids are further tapered (very slowly so the GVHD doesn't return) these effects will lessen, but they make daily life that much more trying.
Thankfully, the GVHD that caused so much discomfort is under control now and we are looking forward to returning to Florida early next week. Kim has been working with several high-school friends on a Disco-theme fundraiser in Sarasota, and she is looking forward to getting back into the planning and execution of what is sure to be a terrific event. The "Hustle for a Cure" Fundraiser is scheduled for November 29th. Additional information will soon be posted to the Upcoming Events page.
Thanks to all for your continued support and generosity.
All our love, Brian and Kim
Slow Steady Summer — August 23, 2000
Not much has changed since our last report over two months ago. Kim's energy level has steadily improved. There are still strong days and days spent on the couch, days spent with friends and days spent in the doctor's office.
Our weekly doctor's appointments have been cut to every two weeks - an indication that Kim is considered far more stable than when we first arrived in Florida. The results from her blood tests have been generally positive as Kim's blood counts continue to slowly recover.
We traveled to Houston on July 17th for Kim's regular checkup at M.D. Anderson. Kim's various appointments went very well with each doctor happy to see Kim's progress. After the scheduled appointments, Kim, with some trepidation, visited the Intravenous Therapy Clinic and had her CVC (Central Venous Catheter) removed. This represented a major milestone in Kim's progress, since she has had a 'port' of one kind or another in her chest since the day she was first diagnosed with leukemia in May of 1999.
The day ended with our first board meeting for the Fund. It was very exciting to be seated at a massive conference table with some of the finest doctors at the finest cancer center in America (as voted by U.S. News and World Reports). As a board, we decided to wait until the money we have raised reaches $50,000 before beginning to distribute the funds to one of several possible leukemia research projects. At our next meeting, each member of the board will be presenting research projects that the Fund could potentially help serve.
A few days after our return to Sarasota, I flew up to Boston to see friends and family, and prepare for our big night with the Girls Room concert.
The day of the concert Tower Records had a kickoff party, with each artist performing one song and announcing the show. I had the opportunity to meet the exceptionally talented women of the Girls Room tour and they were very nice, each asking about Kim and speaking enthusiastically about the tour. The concert itself was a tremendous success. The Karma Club, across from Fenway Park in Boston, filled with 600 people who braved the rain to see some great music for a great cause. The show opened with Tara MacLean, Amy Correia, and Shannon McNally onstage together welcoming the crowd and bringing me up onstage to accept a check for $1000 from Capitol Records. The suggested donation and raffle raised an additional $3000, and we are eagerly waiting to find out the total CD sales figures later this month, from which the Fund will receive $2 for every CD sold in July. Our heartfelt thanks to Jeff Stevenson who put together our involvement with the tour, and to Nikki Cook, Asst. Director of Development for M.D. Anderson, who flew up from Houston for the event. We also thank all of our friends and family who came to the show.
As her health and energy level improve, Kim has begun meeting weekly with several high school friends to organize a fundraiser in Sarasota, Florida. Their plan is to put together an event that involves the whole community and brings all ages together for an evening of fun and fundraising. We hope to have information available on the upcoming events page within a few weeks.
Thanks to all for you continued support and generosity.
All our love, Brian and Kim
Settling in to Sarasota — June 15, 2000
We have now been in Florida for a month. The trip left Kim exhausted but thrilled to back. To measure her continued progress, Kim has her blood drawn once a week by her local oncologist. We get most of the results that day, but one test must be performed in Houston and a vial of Kim's blood is shipped overnight to the lab at M.D. Anderson. Kim's most recent lab results suggest that many of her blood levels are approaching those of an otherwise healthy person.
Our first scheduled trip to M.D. Anderson occurred on June 6th. The check-up went smoothly except for a rash that Kim had recently developed. The doctors performed a biopsy on her back (the third one since the transplant) and it tested negative for Graft Versus Host Disease. This is good, except that the cause of the rash has yet to be determined and it has not fully gone away. Direct sunlight causes the rash to flare-up dramatically. As you can imagine, entirely avoiding the sun in Florida can be a challenge.
We returned from our Houston trip to find a bouquet of flowers: 223 red carnations (click here for a photo). Fellow warrior Bart Cotten and his wife Mariana had sent a flower for each day that Kim had been away from Sarasota. We were overwhelmed and very touched. Later that day we received another surprise. Our friend Jeff Stevenson has arranged for Kim's Fund to be involved in a great concert in Boston on July 27. Check out upcoming events for the details.
Last week Kim and her mother took part in National Survivors Day Kim was very happy to see some of the nurses who had cared for her when she was first diagnosed last May.
As Kim's health continues to improve we look forward to visits from a few of our friends, some of whom we haven't seen in over a year.
Thanks to all for you continued support and generosity.
All our love, Brian and Kim