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KING SINGH
At the age of two, King was diagnosed with a rare combination of blood cancer (leukemia) and an incurable blood disease (g6pd). He completed 3.5 years of daily intense chemotherapy treatment. He received chemo via his port, in his spine and daily chemo pills ranging from 10-12 per day.
As a result of the intense chemotherapy treatment, King lives with late effects including neuropathy and cognitive deficits. He also lost the ability to walk and talk during treatment. Regardless of all the obstacles he overcame and still battles today, he remains resilient and selfless.
King is an asset to his community and gives back in any and every way he can to honor his own battle, his grandmother Roxann who was a 9/11 survivor and friends he lost to cancer. He began participating in walks, advocating and sharing his journey since diagnosis. No child deserves to go though the pain and suffering that King has experienced.
The battle is never over once you hear those words “you have cancer.” This is why it is so important for King to help to find a cure to this horrible disease. King does not take a second for granted and is dedicated to using his second chance at life to pay it forward. His example demonstrates that strength and kindness have no age limitation.
Audrey was three years old when she was diagnosed with Medulloblastoma.
Audrey was taken to the emergency room at Children’s Hospital Orange County because of a headache. The CT scan showed a brain tumor and she was admitted to the ICU. The tumor located at the back of her brain measured 3.9 centimeters and was causing an increase in pressure in the brain, known as hydrocephalus. The MRI scan that followed also revealed a 3.2 centimeter arterial venous malformation, known as an AVM, in her temporal lobe that would typically lead to cranial bleeding if not found and removed in time. Audrey underwent surgery and the entire tumor was successfully removed. Doctors held off on starting Audrey’s treatment to address the AVM and she experienced yet another surgery – this time in Phoenix, by the best surgical team available – followed by a stem cell transplant.
Today, Audrey is a happy, cancer- free nine-year-old who still lives with the daily affects of her treatment. She endures frequent headaches, exhaustion and many emotional struggles that are difficult for her to express. She enjoys dancing, baking and would love to become a teacher or pediatrician when she grows up. She adores her older brother, Blake, who has been by her side through this journey.
She was treated by Dr. Ashley Plant-Fox, a PCRF researcher.
THATCHER HAWK
Thatcher loves his sister, adores his toys, is learning to swim, and always wants to help around the house. He is the epitome of perseverance and joy. Thatcher was diagnosed just over five years ago with Medulloblastoma at age two. After a major surgery, six months of chemotherapy and a stem cell transplant, his family hoped he was in the clear. The cancer came back seven months later, followed by another four months of heavy chemotherapy.
Knowing that radiation might be the last proven treatment to stop the cancer, the goal was to hold off until age five to lessen the detrimental cognitive effects of radiation during those crucial developmental years. After over a year on anti-angiogenic metronomic chemotherapy, and now at age six, Thatcher underwent six weeks of radiation. Still needing surgery and a stem cell rescue to help recover from the devastation radiation had on his body, he championed through 12 cycles of maintenance chemo. Thatcher’s recent MRIs have shown he is clear of any tumors!
While there is much to celebrate, Thatcher is now in the process of repairing the damage cancer treatment has done to his entire body. He wears hearing aids to help the irreversible damage some chemo drugs have done to the inner ear, he wears braces on his ankles to help him walk and run, he has a blind spot affecting his vision from one of his six brain surgeries, and he is undergoing testing to determine if his pituitary gland is damaged and might further hinder his growth.
While we don’t know if Thatcher’s cancer will return, we have hope that his treatments have worked and that there will be better options in the future for other kids, thanks to the research being done today. Maybe one day we will finally have a cure to end pediatric cancer. Until then, the strength and resilience of this happy nine-year-old is an example to us all.
Alyzza was diagnosed at three years old after finding a lump on the left side of her neck. Thanks to a treatment regimen that has vastly changed due to PCRF-funded research, Alyzza endured only 90 days of chemotherapy and was quickly back on her feet.
Forty years ago she would have faced two and a half years of chemotherapy and radiotherapy – a regimen in which only 30 % of patients with advanced disease were still alive two years following.
Alyzza is now four years cancer-free. She is strong, courageous, and wants to help find cures for other types of pediatric cancers. She loves pizza, dancing with her sister, playing soccer, and being able to enjoy her childhood!
ASHER JOHNSTON
Asher Michael Johnston was born on June 18, 2021. Perceived birth trauma to his left eye orbit quickly landed Asher in the emergency room. On July 4th, at just 16 days old, Asher was diagnosed with stage 1 Alveolar Rhabdomyosarcoma, a rare sarcoma that develops in the muscles and can cause pain and swelling. He started on chemotherapy immediately.
On October 15th, just after landing in Boston for radiation treatment, his family was given the devastating news that metastasis had occurred to Asher’s nervous system and there were no viable options with positive outcomes available. The only treatment to consider was a 20-year-old chemotherapy regimen employing drugs that are used in full-grown adults.
Asher continued this treatment for seven more weeks without success. On December 9, 2021, he grew his angel wings and went home to Heaven.
About 350 kids are diagnosed with this type of sarcoma each year. Depending on the location of the tumors, common treatment options might include: chemotherapy, followed by surgery; Intensity-modulated radiation therapy (IMRT), a precise form of radiation therapy that aims beams of different intensities at the tumor from multiple angles to kill cancer cells; and for children experiencing rhabdomyosarcoma in the eye or brain, Proton therapy. Unfortunately, none of these options were viable for Asher.
Clinical trials are exploring potentially more effective therapies for rhabdomyosarcoma. Some clinical trials are evaluating new drugs. Others are assessing existing drugs and drug combinations used in adults with cancer that may be useful in young people with rhabdomyosarcoma.
Andi was diagnosed with stage 3 Neuroblastoma at just 15 months old. Her mass was the size of an adult fist and it surrounded two two major blood vessels in her stomach. From there, all sorts of tests ensued. The first bit of good news came when they said it was not touching her spine nor was it evading any other major organ.
The next morning Andi was scheduled for surgery to do a biopsy, test her bone marrow, as well as put in the permanent IV that would be later used for chemo. The biopsy showed the tumor was intermediate to high risk. After consulting with multiple physicians, who had varying opinions on how to best proceed – ranging from surgery to chemo to doing nothing at all – it was determined that the best course was to observe Andi’s tumor. Experts classified it as favorable – meaning likely to shrink on its own – and fortunately, the wisdom of the experts prevailed.
Andi’s tumor has shrunk on its own by almost 60%. Her multiple scans have all come back clean, and she now just does scans once a year. Her tumor is still malignant, but should eventually turn into ganglioneuroma, which is a benign tumor. She participates in a study at Children’s Hospital of Los Angeles and because her tumor has reacted so well to no treatment, is the focal point of the study. Seven years later, Andi is a healthy and happy eight-year-old. Her experience proves the importance of perseverance, asking questions and letting science and the scientists speak. Twenty years ago, she would have received radiation right away, then chemo, then surgery – all of which we now know her type of tumor would not have responded to.
MIA RUGIENIUS
As the youngest of four, Mia was a very happy and active preschooler. With sudden ankle pain, bruising, low-grade fevers and persistently feeling cold, it came as a shock that she needed to be admitted to Children’s Hospital of Orange County in the summer of 2014. After many tests, Mia was diagnosed with Acute Lymphoblastic Leukemia (ALL) Type B and began treatment immediately. Not able to attend first grade, she lived through chemotherapy, medications, and surgical procedures for two-and-a-half years. Missing many aspects of childhood, Mia saw light and love with all those who cared for her, while achieving remission.
With current cancer research and clinical studies, ALL’s initial prognosis rate is at 90-95% survival. Unfortunately for Mia, remission was abruptly cut short with a heartbreaking relapse after her 12th birthday in 2020. The fear and physical and emotional pain of a relapsed cancer are immeasurable.
Armed and ready for her second battle, Mia went to Children’s Hospital of Los Angeles to receive specialized care for her relapse, including an intense chemotherapy protocol under world-renowned oncologists. While research has yet to determine the main factors for relapse, we hope that ongoing research will provide insights into Mia’s relapse and advance care for other childhood cancers.
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