It was the end of September 2011, when we got a call from our daughter Kamala. As usual, she was in great spirits. We had our usual energetic conversation and all was well. We were preparing for an upcoming trip up to Washington State to visit our other daughter, Ambre.
A few days later Kamala called to say her ability to walk was “off”. There was something wrong with her gait and she was a bit worried. Kamala had always been very physically active, walking around Laguna Beach, running 5-6 miles on an almost daily basis. She had even earned her letter playing for her high-school basketball team. We suggested she see a chiropractor to get checked out thinking perhaps she had been pushing it too hard.
Less than a week later we received a phone call that every parent dreads. She was calling us from Mission Hospital. Tests were being run and so far they had no diagnosis.
She proceeded to tell us that suddenly one morning she had woken up dizzy, with double vision and couldn’t stand up. Her arms and legs were ill coordinated and flailing about. She had called a friend who took her to the ER in Laguna Beach. She had an MRI but they could find nothing wrong. She was released the following day.
Her friend was dismayed at her symptoms and drove her immediately to the Mission Hospital for a deeper examination. She was admitted.
We returned from Washington to our home in Oakland, and then drove to the Mission Viejo Hospital in a daze. My brother and sister-in-law, who live in Laguna Niguel, checked in on her from time to time pending our arrival. Days passed and her symptoms had the medical professionals perplexed. By the time we arrived, it seemed all of the doctors including specialists at Mission Hospital were puzzled by her condition. After three weeks, more blood tests, another MRI and a CAT scan were conducted with no definitive result. Slowly her condition worsened. Her physical ability worsened now spreading to her arms and her speech became slurred. The doctors still had no diagnosis and proceeded to make educated guesses on her care. Ultimately, they assumed she had some sort of unknown virus, treated her with steroids and released her to her our care. We took our daughter home to Oakland to convalescence as we searched for more answers.
Dismayed at her progressively worsening condition, we watched our daughter deteriorate before our very eyes. She could only walk slowly with the assistance of a walker, became very emotional and almost hysterical which we thought was due to her steroid therapy. Her speech was slurred and she had tremors in her arms, legs and head.
Our questions only brought about weak assurances that it was all due to an unknown virus and as with all viruses, it would pass.
During the almost six weeks she was with us in Oakland, there was no evidence of her condition improving. She was getting worse, not better.
Kamala was always a free spirited healthy woman and while she did maintain several jobs, she had no medical insurance. As her parents and senior citizens, we earn a modest income so getting her medical care was a struggle. We reached out to various city, county and state agencies to determine her eligibility for medical assistance. The California State system for medical assistance is so clogged they were unable to get her an appointment to see a physician for several months.
In the meantime, Ambre called to invite Kamala to Washington for the holidays. Ambre is a non-practicing OB/GYN and pelvic reconstruction surgeon. She had visited Kalama in Oakland in November for a few days and when Kamala arrived in Washington in December her immediate response was that Kamala’s condition had worsened and it was her opinion that her condition was definitely not viral. She took Kamala to the University of Washington Medical Center in an attempt to get to the bottom of this horrific and puzzling condition.
After more tests, another MRI, another Cat Scan and an ultra sound, a diagnosis was made that Kamala had ovarian cancer and Paraneoplastic Cerebeller Degeneration. A disease activated by ovarian cancer wherein the immune system, in its attempt to attack cancer cells, mistakenly attacks the brain cells in the cerebellum, the part of the brain that controls body motion, balance and motor skills.
She had her first chemo therapy treatment on December 31, 2011. During the next few months she had two more chemo treatments and several IVIG treatments (a form of protein which seemed to calm her tremors).
In March, 2012 she had a required full hysterectomy. After she healed from her surgery we returned to Oakland with our daughter in tow. Within 10 days, she was admitted to Highland Hospital in Oakland suffering from extreme Ataxia which is total inability to coordinate voluntary bodily movements. She was again treated with an IVIG. It seemed to help and she was released. A week later she was re-admitted for a blood infection, that settled in her spine, that was determined to have been caused by a port; a semi-permanent entry device to her veins used for intra venous injections. It had been put in place at the University of Washington Medical Center and 8 weeks of intra venous anti-biotic treatments followed to heal the infection.
Currently, Kamala’s cancer is in remission, her blood infection is gone and her vitals are excellent. However, she is still suffering from extreme Ataxia which leaves her bed and wheel chair bound. She needs help eating, using the bathroom, bathing etc. Her speech, though somewhat improved, is still slurred and soft making communication difficult. (For those of you who know Kamala, a soft voice is the absolute opposite of her normally very loud voice.)
Her visits to Mission Hospital, Laguna Beach, Mission Hospital, Mission Viejo, the University of Washington Medical Center and Highland Hospital in Oakland, involved being seen by 5 neurologists, 3 oncologists, OB/GYN physicians, optometrists and primary care physicians. All are in agreement that her prognosis is very poor. Less than 5% of Paraneoplastic Cerebeller patients ever recover.
As she is being fed and helped to the toilet she states “This is no way to live”. We feel all avenues of conventional medicine that could be done in an attempt to heal her, has been done. Kamala is doing her best to keep her spirits up, but many days she is losing the battle. She is desperate, and we are desperately looking for unconventional solutions.
In our relentless attempt to help our daughter, we have done some research though the internet and found a stem cell therapy physician with a clinic in Malibu, CA. We have researched the doctor’s background, read testimonials and that of stem cell therapy as well. At this stage, we feel very fortunate to have spoken to the Dr. directly by telephone for an in depth interview and review of Kamala’s case. We now feel there is a light at the end of this dark tunnel and some hope for Kamala’s recovery. The Dr. maintains that the future is now and help is available and recovery possible. He has treated similar symptoms in patients, younger than Kamala, with great success.
Of course, stem cell therapy is not yet accepted in the U.S. so he performs his stem cell therapy in Mexico. While we would love nothing better than to write a check for this procedure, we are in our 70’s, still working to earn a modest income We need now to reach out for some help to get this very expensive therapy for our daughter. Your prayers are most welcome and any financial assistance you can provide just might save our girl’s life. She is scheduled to have her first stem cell treatment August 18th and may need another approximately six months later. Each treatment is priced at $20,000. We are trying to raise a target amount of $30,000.
Thank you for reading Kamala’s story and for any support you can contribute. God bless and well wishes to all.
Rich and Dee Boden