You would never know Joaquin Diaz has cancer. The shaggy-haired 5-year-old races after his older brother, teasing 7-year-old Rafael about his newly shaved head.
But it’s because of Joaquin’s diagnosis — Acute Lymphoblastic Leukemia — that Rafael and 31 other kids and moms either shaved or donated their hair at a Shave for the Brave event organized by Sonrise Christian Private School Satellite Program.
PSP administrator Mary Carnighan said the event got its start when she learned that Rafael was going to be shaving his head to raise money for the St. Baldrick’s Foundation. one of the mothers mentioned taking up a collection to support his cause, when Carnighan thought that it would be nice to get the rest of the children involved.
“What better way to teach them compassion, camaraderie, and investing time and energy in something meaningful that is not about self-gratification,” Carnighan said.
Instead of raising money for St. Baldrick’s, which funds research to help cure cancer in children, though, the 28-year administrator decided to donate the money to the Diaz family.
“It seemed like our kids would be more excited and better able to relate to donating to them than to collecting money for research,” Carnighan said. “There are just so many expenses related to caring for a sick child.”
In 2009, the Diaz family was the picture of happiness. Jessica and Francisco were teachers in Azusa Unified and their two sons were 3 and 5 years old.
Jessica was a dual immersion teacher at Valleydale Elementary and Francisco had taught fourth- and fifth-graders at Magnolia, Paramount and Murray elementaries for 10 years when the recession hit. Dual immersion programs were cut and in spring of 2009, Francisco was one of the many casualties in the education field.
And then in the summer, Joaquin started getting fevers and a severe leg pain that wouldn’t go away.
“That’s how leukemia and a lot of the blood cancers start, because the cancer cells get so compacted in the bone marrow and that’s painful,” Jessica said. “So he was having frequent fevers, they kept giving him antibiotics and it was like, `why aren’t the antibiotics working?”‘
A month after Joaquin’s third birthday and a month after the symptoms started, a new doctor ordered a blood test.
“An hour later I got the phone call, and they can’t tell you over the phone what they suspect it is,” Jessica recalled, “but they told me, `You need to get into the oncology/hematology floor at Loma Linda. There’s a bed there for you yesterday, as fast as you can get there, just pack some stuff and go.’
“And that’s when you know.”
That was July 13, 2009. The next six months were a nightmare, Jessica said. The family, already hit by Francisco’s layoff, struggled with insurance to cover the medical bills. They lost their home to foreclosure so they moved to Rialto, closer to the hospital. with that one call, their dreams — four kids, house, careers — were all put on hold.
Acute Lymphoblastic Leukemia is one of the most common of the childhood cancers, said Dr. Saro Armenian, assistant professor of pediatrics and population sciences department at City of Hope. ALL is an umbrella term for a cancer of the white blood cell and is treated primarily through chemotherapy, either by vein, mouth or spinal cord.
“In the early ’60s, if someone had this it was virtually incurable in pediatric children,” Joaquin’s doctor said. “Through the development of chemo agents and by combining various agents of chemo together we’ve been able to raise cure rates to above 85 percent for children.”
Current research is directed toward giving children therapy in a smarter way, Armenian said. where treatment now is a sort of “carpetbombing,” the doctor explained that the focus has now turned to targeting only leukemia cells and decreasing the intensity of treatment without reducing the success rate.
“The research is twofold: one, we’re trying to find smarter drugs targeted toward leukemia itself,” Armenian said. “And two, if there aren’t smarter drugs, can we give the current drugs in a better way, to minimize side effects without compromising cure rates?”
Joaquin is in the home stretch of his treatment, Jessica said. The family transferred from Loma Linda Children’s Hospital to City of Hope because of the Duarte hospital’s survivorship program.
“When you have a newborn, the first one you have, they tell you, `OK it’s time for you to go home’ and that’s when you have a feeling of, wait, I have to take the baby home?” dad Francisco said. “What am I going to do if he’s sick or how am I going to know if he’s hungry, so it’s the same thing, when September comes we’re going to be like, what do we do now?”
In September, the doctors will remove a port planted under Joaquin’s skin where the chemotherapy is injected and Joaquin will be free to be a normal 6-year-old.
“He’s been on chemo for about three years so it’s like a safety net,” Jessica said. “Because I know while he’s on chemo the chances of him relapsing are zero. Relapses happen when the chemo stops.”
Relapses in leukemia are aggressive, Jessica said. Doctors go straight to bone-marrow transplants and from there, survival rates are a coin toss.
Joaquin knows he’s sick, mom said. “I think he suspects something scary is going on because sometimes as parents you just can’t hide the fear.
“But he was so little when he was diagnosed that I think that’s just his reality.”
And they’re waiting to see if the side effects of the chemo — liver damage, hypoglycemia, arthritis — will cause lasting damage.
But it’s Rafael who Jessica worries about, she said. Rafael will turn 8 years old this summer and he understands that not everybody’s brother is this way.
“Being in the pediatric cancer community, you make friends and you lose friends, and it’s really hard to explain to a child that they died from the same thing that brother has.”
It was a chance encounter shortly after the first round of treatment that led the family to Sonrise. Before the diagnosis, Jessica had been taking the boys to a preschool reading group and the naturally outgoing mom had made friends in the group. during Joaquin’s treatment, though, he couldn’t be around too many children so they dropped out of the group.
One morning when Joaquin was feeling better, the family decided to go to Chuck E. Cheese in Covina really early, for “a post-chemo celebration,” Jessica said.
“All of a sudden this herd of kids came running in and I thought, oh my gosh, we have to leave now, because at that point his treatment was so intense that he couldn’t be around kids,” she said. “I thought, who comes to Chuck E. Cheese at 10 o’clock in the morning?”
On the way out, Jessica recognized one of the mothers from the preschool reading group and they started talking. after learning that the boys were being homeschooled during Joaquin’s treatment, the other mother suggested that Jessica look into Sonrise.
“When I signed up with Sonrise there was just no question about whether I was going to join because they were all so accepting,” Jessica said. “We were strangers and they were cooking casseroles from day one.
“Ever since then, I don’t know what I’d do without them because those casseroles rock!”
At the Shave for the Brave event, families crowded around the stylists, taking pictures of the boys’ newly shorn heads and the girls with their stylish bobs. Though the atmosphere was full of excitement and purpose, there were some tears and grimaces as some of the kids did have trouble parting with their hair.
Desiree Lang said her son Jake had been growing his hair out for months to get it to the perfect length. The towheaded 11-year-old had only decided that week to shave his head and, through some Facebook posts, had raised more than $200 for the Diaz family.
Four members of the Paraiso family participated in the event, with sons Elijah, 12, and Ethan, 10, shaving their heads and mom Anna and daughter Danielle, 8, donating 12 and 8 inches of hair, respectively. The family raised about $500 and was still collecting more donations.
Jessica Diaz is no stranger to shaving events. she has shaved her head twice for St. Baldrick’s as part of the 46 Mommas, even traveling to Washington, D.C., to shave her head. The group gets its name from the 46 children diagnosed with cancer every school day and the 46 mothers affected by the news.
“It’s so special when it’s children (shaving),” Jessica said. “It’s a great way to teach compassion and empathy and they’re just so willing to do it.”
The past three years have been a learning process for the family. Older brother Rafael keeps Joaquin active and cheerful through the medical procedures, lifting the spirits of the entire family.
“Rafael’s a clown, when Joaquin isn’t feeling good he goes out of his way to make him feel better,” Jessica said. “When Joaquin was first in the hospital, Rafael couldn’t understand why he wouldn’t get out of bed so he would overexert himself trying to make him laugh.”
At home, the boys are average kids. They love soccer and cheer for Club Atlas in the Mexican league, play “a lot of Wii,” read and torment the dog.
And the boys are excited about the new addition to the family. Jessica is currently pregnant with the family’s third child, another boy, due in August.
“I told the boys that they could help me decide what the name was, so we’re trying to decide between Woody, Snoopy, Slash and Nacho,” Jessica said. “I’m letting them believe that we’re actually considering those names, and then we’re going to torment the baby when he gets older, `your name was almost Woody!’ “
Francisco is currently getting his certification to teach science in high school. Offered as part of the teachers’ severance, a National Emergency Grant pays for his credential to teach biology, earth science and physical science.
“I like learning, I’ve already gotten my master’s from CGU (Claremont Graduate University), so this is just a supplement to get teachers back in the classroom,” Francisco said.
The family hopes the next five months go smoothly and are nervous about the next two years, until Joaquin can officially be declared cancer-free.
“I think being pregnant helps, because my husband and I feel more hopeful, like this doesn’t have to mean that our future has to end, that we’re defined by cancer,” Jessica said. “The Sonrise group, just knowing that they’re praying every day — they have a calendar and families sign up and pray for us — just knowing that, it takes such a burden off.”
The Shave for the Brave event raised more than $2,700 for the Diaz family and Carnighan was waiting for more donations to come in. to contact Sonrise or make a donation to the Diaz family, call Carnighan at 626-938-1199, email marycarnighan@gmail.com or make checks payable to the Diaz family and send them to Mary Carnighan, c/o Sonrise Christian School, 1220 E. Ruddock, Covina, CA 91724. to see Joaquin’s blog, go to kickincancersbooty.blogspot.com.
“Our life has changed so much in the last three years that the next two years will be very different with no medications,” Francisco said. “I can’t even imagine, it’s like there was a storm and now it’s clear, and it hasn’t been clear in a long time.”
626-962-8811, ext. 2472