Losing Caemon: Grass Valley mother turns her grief into a fight for childhood cancer research funding
For more information on raising funds for childhood cancer research, visit:
To read Caemon Marston-Simmons’ full story, visit Timaree Marston’s blog, “C is for Crocodile,” at http://cisforcrocodile.wordpress.com.
Timaree Marston couldn’t figure out why her 2 year old boy, Caemon, wasn’t excited about the family camping trip. He just kept saying he didn’t feel well. She’d noticed an unusual number of bruises all over his body, but he wasn’t a rough-and-tumble kind of kid.
“One day I grabbed his arm lightly and was later shocked to see bruises where my fingers had been — I knew something was wrong,” said Marston. “Something was definitely amiss.”
Two doctors, several weeks and numerous medical tests later, Marston got the phone call no parent ever wants to get. Doctors suspected that Caemon had leukemia. When it was confirmed he had a fever, he was rushed by ambulance that night to the University of California, San Francisco’s pediatric oncology unit.
“I just kept feeling like this is not where we belong — we had been excited about Caemon’s third day of preschool,” said Marston. “Then suddenly everything derailed. Here I was at midnight signing document after document, prepping him for a platelet transfusion.”
As it turned out, Caemon didn’t just have leukemia, said Marston, he had been diagnosed with Juvenile Myelomonocytic Leukemia, also known as JMML, which is a rare type of blood cancer that occurs when bone marrow production of white blood cells becomes severely impaired. The center of the bones produces immature white blood cells that grow too rapidly, crowding out healthy bone marrow cells. The disease was known to have about a 50 percent cure rate and a 50 percent relapse rate.
After five and a half months of treatment and winning the hearts of the staff at UCSF, Caemon lost his battle with the disease 30 days after a bone marrow transplant. He died on Feb. 5 of 2013. He was just 3 years and five months old.
“Most parents of kids with cancer come away with some element of PTSD,” said Marston. “The staff who choose to work in pediatric oncology are angels. They fall in love with these children. Caemon had exceptional care.”
It took Marston about six months before she was ready to start looking beyond her profound grief. She had seen postings at the hospital with information about the St. Baldrick’s Foundation, the largest private funder of childhood cancer research grants in the world. Under their umbrella was a group called 46 Mommas, a team created in 2010 named to reflect the reality that on an average weekday in North America, 46 mothers are told their child has cancer. The group, now comprised of about 200 around the U.S and Canada, provides a sisterhood for mothers of children who have or have had cancer.
“This was a tribe I needed to join,” said Marston, who lives in Grass Valley. “It is a powerhouse group of fierce mothers with a shared experience — it’s raised $2.2 million for childhood cancer research for St. Baldrick’s since its inception nine years ago, and still going. Since then I’ve become part of their leadership team. I’m grateful to be at the center of this.”
In the past, the 46 Mommas team has taken part in annual “Brave the Shave” events all over the country, where people agree to shave their heads for donations to the St. Baldrick’s Foundation, based in Monrovia, Calif. A recent event took place Saturday in Nevada City, which raised $13,000.
This year, however, Marston was one of 52 “Mommas” and 70 participants (including children) on April 16 and 17 to take their voices and stories to Capitol Hill in Washington, D.C., where they focused on advocating for the passage of the Childhood Cancer Survivorship, Treatment, Access and Research Act, considered to be “the most comprehensive childhood cancer bill ever taken up by Congress. The bill, HR 820, is designed to expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences and enhance the quality of life for childhood cancer survivors.”
“This year, we didn’t shave our heads — we wanted to do something different,” said Marston. “So far, the bill has passed the Senate with unanimous support but it’s still in talks in the House. We went to Washington to thank the senators and talk to members of Congress who have not yet come out in support of it.”
Marston was armed with the power of Caemon’s story and his photograph, the image of a smiling vibrant boy shortly before his devastating diagnosis.
“Overall, we were well received — some moms were actually able to change congress members’ minds,” said Marston. “I met with several of our representatives, but mostly to thank them. LaMalfa was already a co-sponsor of the bill. I met with a member of his staff.”
If Marston’s commitment to the cause is any indication, St. Baldrick’s Foundation and the 46 Mommas are not giving up until childhood cancer research gets the funding it desperately needs. Because more adults than children are diagnosed with cancer, governments and foundations are currently funding far more research for adults.
At St. Baldrick’s alone, of the $34 million needed to fund every grant application that received an outstanding score in June 2017, only $23.5 million was available and granted. According to the foundation’s website, about 60 percent of all funding for drug development in adult cancers comes from pharmaceutical companies.
For kids? Almost none, because childhood cancer drugs are not profitable, it states. In fact, according to the National Pediatric Cancer Foundation, only 4 percent of federal government cancer research funding goes to study pediatric cancer.
Marston has seen firsthand what research funding can do. UCSF physician Elliot Stieglitz received a $300,000 research grant from St. Baldrick’s to study Caemon’s blood cells and study children with JMML who have relapsed. It changed the course of his career. He was able to find a second mutation after Caemon’s death — something that had never been discovered before. Stieglitz now has a lab solely devoted to JMML at UCSF.
Marston, a seasoned English professor who has taught at two state universities in Humboldt and Sonoma, has launched “Caemon’s JMML Hero Fund” through St. Baldrick’s, which can be found at http://www.stbaldricks.org/hero-funds/marstonsimmons. She also has her own blog, “C is for Crocodile,” http://cisforcrocodile.wordpress.com, which has served as a place where parents with sick children can turn for support and information. Caemon identified with crocodiles when he wasn’t feeling good, she said.
“This work is how I’ve survived,” said Marston. “If I didn’t have this mission, it would be easy for me to disappear into my grief and loss. Caemon would have wanted to see me happy. He would have wanted this. He didn’t die for nothing — there’s a purpose to the three years and five months he was with us.”
To contact Staff Writer Cory Fisher, email her at Cory@theunion.com.
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