One family's sad fight - not certain this is the
SAME vaccine but think so ....
A family’s pioneering role
Mead Treadwell shares how his family copes during a fight against life-threatening illness
By Mead Treadwell
Source: Dateline, MSNBC
AS MANY AS 14,000 people in the United States will learn they are afflicted with brain tumors this year.
It is an outrage. Brain tumors sneak attack like a terrorist. Year after year, they are deadly as war.
We don’t know why. Until we cure them or prevent them, they will strike more vibrant, beautiful people with young kids and contributions to make to the world — people just like my wife Carol.
Our family has faced this tumor with faith, hope, and all the energy as we can muster. “They that wait upon the Lord,” said Isaiah, “shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”
Carol’s affliction has posed this challenge: Can current medicine keep her stable while science finds a cure? The “gold standard” for brain tumor treatment today does not make promises — it offers a choose-your-own menu of drugs, surgery, and radiation with some chance to slow a tumor down.
Carol and I live in Alaska, known as “the Last Frontier.” Pioneering has taken us high in the Russian Arctic where we helped open our border with our neighbor. For adventure we love to head deep into Alaska’s hidden places, by foot, boat, ski, floatplane or kayak.
Before the tumor, our family had already given many hours to science. We’ve helped establish the Prince William Sound Science Center in Cordova and the Alaska Sea Life Center in Seward. The Institute of the North, which my employer Governor Wally Hickel founded and I manage at Alaska Pacific University, is focused on bringing the North together, and policy challenges posed by the earth’s vast commonly-owned resources. I have spoken and written about national security issues, and missile defense, where our lives depend on reliable technology and determination to develop it. After the Exxon Valdez oil spill, we helped establish a science-based citizen’s oversight group to help prevent further disasters. One of Carol’s sisters, Donna, now works there. President Bush appointed me to the U.S. Arctic Research Commission, which advises him and Congress on research in these parts.
These frontier experiences have taught us no gain is made without risks. Our friend, 97-year-old Polar explorer Norman Vaughn has told us “dream big and dare to fail.”
Experts said Carol’s odds were to fail. We continue to dream big.
Thank goodness we met Dr. Linda Liau. She’s one of a group of pioneers in this field who have “the right stuff.” And she may have an answer for this awful disease.
We learned about her approach in December of 2000, our first visit to UCLA. We asked her colleague, Neuro-Oncologist Dr. Timothy Cloughesy, if he thought immune therapy could work to prevent low-grade tumors from becoming high-grade, deadly ones. He thought it possible, but his next words were that Carol just wasn’t sick enough then to try so new and risky a trial.
So we waited, waited with a sword over our head. We did more conventional medicine, and kept our eyes open to developments in the field. Using the body’s own immune system had incredible promise — especially as almost every other treatment works (or attempts to work) by depressing the body’s amazing immune system.
Carol’s tumor didn’t wait. Under chemo, the tumor was “progression free” on both MRI and PET scans for about a year, but on Valentine’s Day this year, Dr. Joon Uhm called us into his office at the Mayo Clinic with bad news. In the weeks that followed, the resurgent tumor sprouted new lesions like fireworks.
Carol was then eligible for Dr. Liau’s trial. She would be patient number 11 in a procedure that eight others had survived, six of them more than two years. Two years is double the life expectancy of a patient with glioblastoma multiforme, and these patients are still kicking! We were overjoyed to be accepted, and heartbroken when the a new tumor required Carol to have a second surgery in May, delaying the vaccine.
Did the vaccine work? Even after the delay, the fireworks display did stop — new tumors did not form after Carol received it — but the vaccine was not able to outrace the existing tumor that Dr. Liau’s scalpel could not remove. Others were more fortunate. Someday, as science learns to characterize tumor cells and the antibodies which fight them, vaccine therapy may even be used to prevent tumors before they happen. (Read more about the vaccine on UCLA’s Web page.)
When we learned in mid-July that Carol’s tumor had kept growing, we once again went to some of the best brain tumor doctors on earth for advice and consultation. We decided to try using more conventional drugs to stop the tumor growth so the vaccine — or another new treatment — could be applied again. As this is written, we are praying Carol recovers from her latest setbacks which have her resting at home in a hospital bed, unable to walk or talk.
Our lessons from this experience probably won’t find favor with every medical professional. Some things we did may help other patients and caregivers hope and cope.
When you’re diagnosed with this disease, get thee to a major cancer center, with a team of specialists in neuro-oncology. My late grandmother, who ran the Heart Association during the 1960s and 1970s in Kansas City, had preached the value of a teaching hospital if you’re in a really tough spot. Carol’s sister Laura arranged for us to get to the Mayo Clinic immediately after Carol was struck by seizures in July, 2000. (We later visited Duke, and our Mayo and UCLA doctors had helpful advice on Carol’s case from experts at the National Cancer Institute, Johns Hopkins, and UCSF.) Specialists are more likely to have a cutting edge or to connect you with trial work. A government Web site, clinicaltrials.gov, lists every approved cancer trial in the country.
Be prepared to make choices — when a disease is “incurable” doctors are more likely to present options than answers. Brain tumors are fought now with chemotherapy, surgery, radiation, and a number of promising “biological agents.” Carol tried many of them — usually drugs approved first for another purpose. We asked as many questions as we could, and compared answers between specialists. The Mayo Clinic helped pioneer this team approach, and our wonderful “quarterback” there, Dr. Joon Uhm, tells us no doctor worth his salt should be afraid to have a patient get a second opinion — or a third.
Diagnostic tools for brain tumors seem to be changing as fast as treatments. Stay abreast of them. Early on, Senator Ted Stevens and his wife Catherine urged us to go to UCLA to have a PET scan. There we met the PET scan’s inventor, Dr. Mike Phelps, and learned how new imaging techniques move beyond tracking a tumor’s physical damage to tracking its metabolism. PET became Carol’s early warning system, and because of it, we began more aggressive treatment and probably extended Carol’s life. Other tests, including genetic studies that help characterize the tumor, help predict which treatments can be more effective. You may have to bear some expense for these tests, but costs are often covered by insurance or even research budgets.
Keep an eye out for what might be tried next, if current treatment doesn’t work. When Carol’s condition worsened this summer, for example, our doctors suggested some other trials we still hope Carol can qualify for. A new one, which is testing a treatment we guess might someday be combined with immune therapy, uses viruses to attack tumors; we pray for the success of the trial now happening in Calgary. Click for more information about clinical trials.
5. Much of your time fighting a tumor is sharing your story — with family and friends, for sure, but also with other doctors and experts who might help. There is a fantastic free service on the Web called thestatus.com (begun by an Alaskan company, yet!) where we instantly created a Web site and posted regular updates on Carol (enter “treadwell” under patient name and “carol” under password to see it). It saved us invaluable time and really helped keep folks in touch.
During this entire ordeal, nothing has boosted Carol’s spirits more than to have a kid to hug. For us, one-on-one time with Tim, William or Natalie was therapeutic, often better than the “chatter” of three at once.
I only learned lately that Carol’s condition may have qualified her for disability under Social Security. We’re applying for it now, but the money could really have helped cover the cost of extra kid care while Carol was away. And getting a “case manager” at our insurance company has allowed us to “flex” benefits so Carol’s needs can be met with less expense to our family.
Fighting a brain tumor made us stronger in our faith, closer to friends and family, and closer than we’d ever thought we’d be to the frontiers of medicine.
Now, in September 2002, the tumor’s advanced stages have disabled Carol immensely. I hold her in my arms, pop blueberries into her mouth, squeeze her hand or give her a massage. She comprehends but can barely speak. But Carol can still say so much with her eyes.
Before she quit talking, we signed a will, and, to use the doctor’s euphemism, “put our affairs in order.” We then talked about the qualities of pioneers that we really hope to leave our children: Kindness and love …reverence …an obligation to serve the world…a sense of humor…curiosity…a thirst for adventure…appreciation for liberty. And courage, discipline, focus and persistence to get good things done.
We believe this cruel disease will be curable. Pioneers and prospectors, doctors and patients, will figure it out soon, testing new techniques one life at a time.
Godspeed and success to them, and to us all.
neurosurgery.ucla.edu |
