The spot of darkness in his right eye is growing. It gets bigger and bigger until he can’t see out of that eye. He’s also losing vision in his left eye.
Note: This is Part 2 in a three-part series.
The spot of darkness in his right eye is growing. It gets bigger and bigger until he can’t see out of that eye. He’s also losing vision in his left eye.
It’s a little more than a month after San Benito High School student Jose Rocha, 18, was diagnosed with leukemia, and the chemotherapy is making him go partially blind. Despite the set-back, he still plans to finish a project he started three and half years ago: graduating high school.
Rocha takes an audiobook CD and puts it into a loaned laptop. He listens to the recorded voice of Gwendoline Yeo as she reads “The Kitchen God’s Wife.” She reads what he cannot: his assigned novel from English class.
“He has many goals but the closest one he knew he could obtain with a lot of work was graduating,” says his mother, Alicia Andrade-Rocha.
Reading. It’s a once ordinary skill that suddenly – like everything else in his life – is difficult and a luxury.
Sometimes, focusing his eyes on the computer screen makes him nauseous. Other times, the chemotherapy makes him too sick to work. But every day, he tries a little more because he believes pushing the limits of today is the only way tomorrow will get better.
Rocha has a subtype of leukemia so rare, it’s not a requirement that nurses and doctors learn about it. It’s called Childhood Acute Promyelocytic Leukemia. Only one percent of all childhood leukemias are APL, according to the St. Jude Children’s Research Hospital website.
“They compared it to a one-in-a-million type of diagnosis for people that have leukemia so they didn’t know I had it,” Rocha said.
Since being admitted into the hospital in mid-February, Rocha hasn’t been allowed to brush his teeth because the bristles of a toothbrush could cause bleeding that won’t stop. And while bleeding is always bad, chemotherapy is killing his body’s platelets – a type of cell that serves as the body’s natural blood clotter – along with the cancerous cells.
Rocha’s body rejected platelet transfusions from donors, so he is trying to avoid anything that will make him bleed. Instead of a toothbrush, he uses a special mouthwash.
Help is on the way
It’s April. The cost of fighting this battle for his life is adding up. In two months, the family has spent $7,000 in savings on medicines not covered by insurance and gas for the family car. The trips from Palo Alto to Hollister are at least an hour each way and cost about $50 in gas round-trip.
The community is stepping up to help. Rocha’s high school senior class president, Frankie Sanchez, organizes a walkathon to raise money for his family. The Rochas receive a check for $1,200 in donations. For his parents, it’s money to help their son. For Rocha, it’s a reminder that people at home care.
“It really touched me because I would never, ever in a million years picture anyone coming together for – for me,” Rocha said. “I was just – I was surprised. I was touched. It was really uplifting and it really, really helped me know that there’s so many people in the world that really want to help.”
It’s a generous contribution to be sure, but it pales in comparison to the costs of cancer treatments.
In the hospital, each bag of chemotherapy costs $10,000 and as much as $50,000 in drugs can be given in a single week during the treatment process. The family’s insurance covers 80 percent of the costs, but the family must pay the other 20 percent, explains Andrade-Rocha.
At the same time, the costs of daily living – the groceries and the rent – don’t go away.
Rocha continues to plod along in school. At first, his mother helps him write school assignments as Rocha dictates the words. Eventually – when it’s clear some of vision loss is here to stay – Rocha decides he needs to do it himself.
All he can think about is how much harder this process would be if he had been an orphan or a foster child without a supportive family helping him along.
“I had my family support 100 percent of the time, whenever I needed them, and it was still a pretty hard thing,” Rocha says. “I couldn’t possibly imagine how hard it would be for them already wondering why they don’t have parents or they don’t have family or someone to be there for them. And then they have to go and deal with cancer things. That was just heartbreaking for me knowing how hard it was for me and my family.”
Rocha is working closely with the Lucile Packard Children’s Hospital School, within the Palo Alto Unified School District, to make sure he’s on track to earn his diploma. He has a 504 education plan, which means he won’t do all the same assignments he would have done in typical high school classrooms but he’ll do enough alternative work to earn his degree.
His assigned teacher, Thayer Gerahon, brings him a computer every day so he can listen to his audiobook and complete assignments. Gerahon encourages Rocha to participate in the Palo Alto commencement ceremony because the district is accustomed to helping students with cancer participate in their graduation. Rocha won’t do it. He politely refuses. He wants to graduate a Baler with his friends.
Graduation Day
It’s June 6. The morning is bright and warm, like Jose’s beaming smile.
As Rocha walks down the ramp from the stage into a sea of his peers, he puts his hands in the air and grins. He wears a graduation gown that is Baler red, the color of the school he loves.
“It was amazing,” Rocha says, as he stands in front of the commencement stage and reflects on the ceremony. “I graduated with all my peers and all my friends.”
His friends run in to give him hugs. Andrade-Rocha is crying as she takes pictures of her son. His father, Jose Rocha Sr., is watching proudly.
“Graduation has been and was one of the biggest, important short-term goals that he’s had during this time,” says Andrade-Rocha. “He and his peers have been working on this. And high school, middle school, is such a struggle for kids because they’re trying to learn who they are.”
Graduation is behind him, but the journey is not over. Treatment will continue through late September or early November. Still ahead is the final diagnosis, based on how well Rocha responds to chemotherapy. Then, there are the hospital bills.
In this moment, though, there is only now. Rocha has graduated from high school and he’s responding well to treatments. Things are looking optimistic.
Check the paper next week, to read the third story in the series and to learn how Rocha continues to work toward his next goal: becoming a psychologist for cancer patients.
Look back next week for Part 3.
RE-CAP FROM PART 1:
San Benito High School senior Jose Rocha was diagnosed with leukemia on Valentine’s Day and since then he’s been fighting for his life. The side effects of chemotherapy caused him to go partially blind, but despite this hurdle, he managed to finish his course work so he could graduate with his peers last month.
Through dealing with leukemia, Rocha found his career path. He plans to study psychology so he can help children who might not have the kind of support structure he found in his family as they deal with a cancer diagnosis.
COSTS FOR THE ROCHA FAMILY:
$50-60: Gas for one round-trip from Hollister to Palo Alto
$500-600: Monthly medication costs to the family after insurance
The Rocha family’s insurance covers 80 percent of the costs of treatment. In addition to medical costs, the family must continue to pay for the basics of life including groceries and rent.
Source: Jose Rocha’s mom
HOW TO HELP:
To make a donation, go here: http://www.gofundme.com/7ezx48
GET A PORTRAIT, HELP THE ROCHAS
Alicia Andrade-Rocha posted last week’s article to her Facebook page and a former colleague who owns a professional photography business responded with a fundraiser idea: Let his staff take portraits and ask families to make donations to the Rocha family.
Through the end of the year, the Santa Cruz-based Mockingbird Photography company will take any kind of portrait including family photos, actor headshots, pictures with kids and photos with pets for a minimum donation of $25.
The company’s owner, Helbard Alkhassadeh, was inspired to help after he read about the reoccurring costs of dealing with cancer, including the cost of filling a car with gas to make the drive from Hollister to the hospital in Palo Alto.
Prior to making photography his full-time passion, Alkhassadeh worked with Rocha’s mom for the County of Santa Cruz where he helped people transition from welfare to work. Sometimes Alkhassadeh’s job required him to make house visits and he was always surprised by the lack of family photos hanging from refrigerator doors at the low-income residences he visited.
Those who don’t want photos but still want to help the Rocha family can make a donation of $25 or more and ask that the their photo shoot be given to a local low-income resident who wouldn’t otherwise be able to afford a family portrait.
“The donation can have a double bang for its buck,” Alkhassadeh said. “You help out the Rocha family and you help out a local family in need.”
Donors will get a CD of digital images from their photo shoot and will be able to make their own prints. Every dollar of the donations goes straight to the Rocha family. For more information call Mockingbird Photography at (831) 471-8054.
