Ingram-Thurston: An important update on a Los Banos angel
We have become so immersed in stories of COVID that we sometimes forget that other illnesses are taking their toll on our communities.
This is just one of those stories. Back in 2018 I first introduced to my readers the story of Eleanor Rose and her mother, Cynthea Hobbs.
When Cynthea arrived at Los Banos Community Hospital she was excited as any new expectant mother would be. It was April 11, 2018 when little Eleanor Rose was born.. All looked normal until, after some concerning symptoms, Eleanor went through testing when she was 2 weeks old. She was then diagnosed with Severe Combined ImmunoDeficiency.
Fortunately Los Banos Community Hospital tests for this rare disease so Eleanor Rose and her mother could be fast tracked to a San Francisco hospital and enter isolation while treatment was considered.
SCID is a group of rare disorders caused by mutations in different genes involved in the development and function of infection fighting immune cells. It is estimated that 10 babies out of every 10,000 suffer from this deficiency. Infants with SCID appear healthy, but they are highly susceptible to severe infections The condition is fatal, usually within the for two years of life, unless infants receive immune-restoring treatments such as transplants of blood forming stem cells, gene therapy or enzyme therapy.
This is a frightening and life changing diagnosis. A parent faced with the facts of the illness knows their child desperately needs life-saving stem cells. The best chance is if a sibling is a close match.
This did not happen for Eleanor Rose. When I last wrote about her she was still in isolation in a San Francisco hospital.
It was a stressful roller coaster ride trying to find the right bone marrow donor. It was very hard for the mother to be away from her home in Los Banos and her two sons, but she felt she had no choice but to stay with her daughter.
When Los Banos residents read about Eleanor the last time, they showed an outpouring of love. Now I can update my readers on the continued journey of this amazing, heroic young girl.
Eleanor had been at the hospital for eight months when she got two bone transplants in 2018 from an unrelated donor. Sadly that didn’t work.
Eleanor caught a bone infection in her right middle finger. She had to have multiple wash outs of the finger which required anesthesia and surgery.. Then they found the infection had spread to other parts of the body. Both of her elbows, her left thumb, her left shin and left foot also became infected.
Her finger had to be removed in order to keep the infection from coming back and crippling her entire hand. At that time, November 2019, the doctors noticed that Eleanor’s first bone marrow transplant was not working.
Eleanor had lost all of the cells she had gained and that was why she was so susceptible to infection.
This was heartbreaking news. The doctors had to move fast to recover her immune system in order to have a fighting chance against the rapidly spreading infection. They ended up having to use Eleanor’s mother as a donor even though she was just a nine out of 12 match. They planned chemo before the bone marrow transplant so that it would have a better chance of success.
Eleanor received the third transplant of her mother’s cells. She lost her hair and ended up having another major surgery on her elbow.
This surgery was even harder on Eleanor than the finger removal and she was left very weak. As time went by however, her cells began coming back. With the combination of eight antibiotics, one of which was experimental, she began to heal.
Finally on Feb. 26, 2020 Eleanor was able to go home, just as the COVID pandemic reared its ugly head. In July 2020, Eleanor needed five more surgeries because her immune system was finally doing its job. They are hoping this is her last one.
Eleanor now has a healthy immune system. She has had some of her vaccines and is doing very well. However, because Eleanor is at high-risk due to COVID, she is still in isolation, but at least she is home. It is impossible to even try to imagine the stress, worry and pain this poor little girl has known her entire short life.
When I talked with Eleanor’s mother last week I wondered what could be done for this heroic little girl.
I was told that her daughter has one big wish, something that will really make her happy. It is my sincere wish that our Los Banos community will join with the Make A Wish Foundation to help make Eleanor Rose’s dream a reality. Watch for my next column that will tell you about Eleanor’s wish and how we can all help to make it a reality.
Los Banos losing its heroes
Los Banos has had more than its share of great losses recently and it seems like many people are passing away without much notice.
To me, this is unacceptable. Every person has a special role in life, and their passing diminishes us all. I’m still reeling from the death of our past Supervisor Jerry O Banion.
And now we have lost Colleen Menfee. A past member of our Los Banos Unified School District School board, Colleen jumped in wherever she saw need.
Active in the Los Banos Arts Council, Rotary and Friends of the Library, Colleen’s hands and mind were always busy finding ways to help the community she had come to love so much.
I remember when I first met her she told me she was one of the “damn people”. I was kind of shocked.
New to Los Banos, I did not yet know of the influx of people that came to Los Banos when our San Luis Reservoir was built. Colleen came with her family and it was to become the place she would live out her life.
For a time we were neighbors. She lived across the street and I learned to appreciate her values and friendship.
Like Jerry, a man I liked and admired so much, Colleen was a one of kind that can never be replaced.