At just 16 years old, Joseph “Jordan” Dobson has had to endure the horrifying effects of cancer for more than a decade. Eleven years ago, he watched his mother, Nana, diagnosed with leiomyosarcoma, and his then 3-year old brother, Matthew, diagnosed with rhabdomyosarcoma, simultaneously undergo chemotherapy and radiation treatments. It was a devastating loss for the family when Nana passed away shortly after Matthew’s cancer was considered cured (he is currently in remission). Along with their father, Joe, the boys carried on with their lives; thriving in school and enjoying sports.
In September 2014, the unexpected occurred…Jordan, a sophomore at Rio Mesa High School and a cross-country team member collapsed and suffered a full body seizure during a practice run. Good Samaritans stopped to assist him and he was taken to St. John’s Regional Medical Center where a scan was performed, revealing a mass on his brain. He was immediately flown to Children’s Hospital Los Angeles (CHLA) where a biopsy confirmed a malignant brain tumor, grade III anaplastic astrocytoma. As the cancer was prevalent, it was immediately apparent that surgery and/or radiation were not viable treatment options.
Shortly after his release from CHLA, Jordan began a regimen of chemotherapy, a combination of Temodar and Avastin, at the CHLA satellite site located in the Ventura County Medical Center (VCMC). For several months, the chemo kept the tumor stable, but Jordan’s health began to slowly deteriorate from the toxicity of the drugs. He had already suffered an additional major seizure that led to hospitalization and several seizure-like episodes (flashes of light in his eyes) resulting in migraines and peripheral vision loss. His oncologist recommended a new course of action – a clinical trial rarely open to anyone under the age of 18. The trial drug, Keytruda, proven successful in fighting other forms of cancer, was administered to Jordan two times over a six week period. Besides lethargy, he did not experience any side effects. Unfortunately, hope for the success of the drug to shrink the tumor was short-lived. An MRI revealed that the tumor had grown. The clinical trial was ended.
Although treatment options are extremely limited right now, Jordan and his family remain optimistic that a successful treatment will become available soon. They recently visited with doctors at the City of Hope and are awaiting approval to use the OptuneTM system, which uses transducer arrays placed on the scalp to send electric fields into the brain to help slow or stop recurrent cancer cells from dividing. There is much hope that these Tumor Treating Fields (TTFields), along with Temodar, will be successful in extending Jordan’s life.
In the meantime, Jordan remains mostly at home; he is uncomfortable being in other surroundings because of his progressive peripheral vision loss. Although he misses attending school and participating in various sports, spending time with friends, playing guitar, and computing/gaming help to curtail his boredom. Jordan’s wit and sense of humor (including a large dose of sarcasm!) help to lighten the mood. He is a strong young man, overtly protective of his brother, mindful of his manners, confident in his abilities, and aware of his circumstances.
It was confirmed through testing of the TP53 gene, that the Dobson family is one of approximately 500 families worldwide to have Li-Fraumeni Syndrome (LFS), a rare cancer predisposition hereditary disorder characterized as autosomal dominant. It is also known as the sarcoma, breast, leukemia and adrenal gland (SBLA) syndrome. LFS-related cancers often occur in childhood or young adulthood and survivors have an increased risk for multiple primary cancers. Regardless of this actuality, Jordan is determined to beat his cancer. Through the continuing support of his family, friends, doctors, and the community, he finds strength and encouragement.
Jordan is so grateful and honored to be one of the recipients of the 2015 7th annual Mike Nosco Memorial Bicycle Ride. He hopes to make a personal appearance during the November 3rd event, and he wishes all of the participants a healthy and safe journey.
Update: On June 28, Jordan Dobson passed away at home in his sleep, family and friends were by his side.
Lori Romig is a wife, a mother and a fierce fighter! In 2001, immediately following the birth of her daughter, Tatiana, Lori was diagnosed with esthesioneuroblastoma – a very rare form of tumor that starts in the olfactory nerves and runs right up into the brain. Since 2001, she has not gone more than 18 months without a recurrence. Lori has endured countless radiation treatments, multiple rounds of chemotherapy and most recently a clinical trial with two biologics, but she had to stop the trial this past January when she had a bout of meningitis. To date, Lori has had six craniotomies, the most recent on August 3, 2015, to put in a shunt to relieve the pressure on her brain due to hydrocephalous. She has had ongoing seizures for years, but they are for the most part controlled by medication. Communication and language seem to be the most impacted by both the seizures and the tumors.
The negative impacts of this fight have been many, but Lori and her family try not to focus on the negatives. The hardest part has been that Lori’s daughter, Tatiana, has been a enduring her mom’s battle her entire life. When Tatiana was younger, Lori and her husband, Tim, tried to keep it from her, but when they finally told their daughter what her mom was going through, it was brutal. Tim said, “having my eight year old look at me and ask ‘is mommy going to die’ was very hard, and the sad truth is, we cannot say no. We can only tell her we don’t know, we are doing what we can.”
This on-going journey has taught the Romig family many things, they feel that they are better, stronger people, who are more empathetic, compassionate and have a better perspective on life. Unbelievably, as they have been enduring their own epic battle against cancer, they have done whatever they can to help out and give to others. The Romigs have done the Relay for Life for the past 10 years, bringing in more than $100,000 to the American Cancer Society. Additionally, Tim co-founded FaceOffWithCancer, a nonprofit organization with the mission of supporting people in the Southern California hockey community who are battling cancer; they have raised nearly $100,000 over the past four years.
Lori is currently not able to communicate much at all, which is very frustrating for Lori and her family. Being named a recipient for the 7th annual Mike Nosco Memorial Bicycle Ride has given the Romig family a boost of energy and support to continue their years long fight.
Update: Lori Romig passed away in August 2016
Kim Scherrei is an amazing wife, and mother of four to Gwendolyn 15, Gretchen 13, John 11, and Natalie 9. In 2011, Kim was diagnosed with breast cancer; she had no family history, no high risk factors, and leads a healthy lifestyle. She found a lump, and was told it was “probably nothing”. After a biopsy and PT scan, it was confirmed to be cancer. On August 1, 2011 Kim had a double mastectomy and was diagnosed as being ER/PR – and Her2Nu +. On September 6, 2011 (Kim and her husband Chuck’s 14th wedding anniversary) she started a chemotherapy regimen that turned out to be a nightmare. In addition to hair loss, weight loss, nausea, vomiting, and depression, she passed out twice and had to be transported to the emergency room via ambulance – once from her doctor’s office. Kim’s veins became unusable, so she had to have a port-a-cath surgically implanted in her chest between rounds of chemotherapy. She was originally scheduled to do six rounds of the chemotherapy regimen TCH, but after the 5th round her oncologist declared her to be done. Kim’s doctor said, “We are trying to cure her, not kill her”.
In December 2011, Kim was officially told that she was in remission. She continued to receive Herceptin for an additional year. Kim made it to the 3-year mark of remission and we thought we were “home free”. Unfortunately, she did not make it to the 4-year mark. In May of 2015, Kim felt another lump, this time in her shoulder area. Again, we were told that it was “probably nothing”. After further testing, we received the devastating news that the cancer had come back, and that it was in her lymph nodes. Kim had surgery to remove one lymph node for tissue sample purposes, and to reinstall the port-a-cath in her chest. She has had two rounds of Herceptin and is on an oral chemotherapy drug called Xeloda. We are awaiting Kim’s next scan to see if the current course of chemotherapy is working, or if we need to try a different strategy.
Kim’s husband, Chuck, and their four children are extremely grateful that Kim is currently in good spirits and at this time is able to be a part of their family life. Kim’s four kids love their Mom, and have done an amazing job dealing with the fact that she has cancer again. The Scherrei family is very humbled and honored that Kim has been named a recipient for the 7th annual Mike Nosco Memorial Bicycle Ride.