“I fear I am becoming numb to this new life. I hadn’t cried in a few days. I was looking forward to getting the boys ready for the new school year, planning Eli’s birthday party, etc. However, you see, it comes and creeps up on you like a snake to bite you. I’m standing in line at the grocery store and it hits me. I cry. Right there. I can’t stop the tears. I want to just crumble onto the floor. There is truly nothing that can explain that feeling.
“My son has a brain tumor measuring 2.1 x 1.2 x 1.1cm and there is not a single thing I can do about it.”
Amanda Vargas has been living with this reality since June 22, 2017.
Her 4-year-old son Elijah — or “Eli” as she affectionately calls him — was diagnosed with a low-grade pediatric brain tumor.
With Eli complaining of headaches, Ms. Vargas could have never predicted this outcome, as just two days prior doctors had told her that her youngest son’s MRI scans were clear.
But there was an error. A life-defining error. A my-family-will-never-be-the-same error.
Ms. Vargas now spends months at a time wondering if Eli’s tumor has grown, with MRI scans with his team of doctors at Cedar Sinai in Los Angeles occurring every six to nine months.
Doctors have not called for surgery or chemotherapy, but it is the ultimate reality. The tumor will not go away on its own. Doctors are just trying to let the now 7-year-old’s brain develop as long as they can.
As long as the tumor doesn’t grow, the inevitable can be avoided.
And with every visit to Los Angeles, little Eli’s family holds its collective breath.
“Now we wait. Wait to hear the results. This part is probably the worst thing any parent has to endure. I don’t want to see anyone, I don’t want to talk to anyone. Not today. Not until I hear that my son’s tumor hasn’t moved or grown. Then at that moment, I will be able to take a deep sigh of relief, pick myself up and continue on this journey,” Ms. Vargas wrote on her blog at greymom.com.
Ms. Vargas isn’t alone in her concern, as Eli shares a bedroom with his two older brothers, 17-year-old Israel and 11-year-old Noah.
The Vargas family has seen long odds from its inception, with Ms. Vargas and her husband, Julio, having Israel when Ms. Vargas was just a freshman at Santa Barbara High School.
The school helped Ms. Vargas stay on track, offering child care during the day that allowed her to earn her diploma in 2004.
“I’ll be forever grateful to Santa Barbara High for not turning its back on me,” Ms. Vargas told the News-Press.
And some 15 years later, the school is positively impacting her family once again.
Despite not being able to play for a traditional football or baseball team due to the obstacles that come with having a brain tumor, Eli has an overwhelming passion for sports — “he can’t get enough of them,” Ms. Vargas said.
And, at 6 p.m. Thursday in the high school’s cafeteria, he will be adopted by the Santa Barbara High baseball team — a lifetime member of the squad, uniform and all.
“He’ll be with us forever,” head coach Steve Schuck said.
The adoption comes via a relationship formed between Mr. Schuck and the Friends of Jaclyn Foundation, an organization founded to “help sick children connect with a team to show them love, support, friendship, and give them a sense of belonging.”
Due to strict privacy laws, Mr. Schuck struggled to find a child to adopt, having to lean on a relationship with the Teddy Bear Cancer Foundation to eliminate the red tape and place Eli with the Dons.
While Mr. Schuck looks forward to providing the 7-year-old with teenage mentors, he believes that his team and the school will learn far more from Eli.
“I want to show my players how fortunate and lucky we are,” Mr. Schuck said. “We are adopting somebody that looks like they can play baseball, but unfortunately, for some reason, can’t.
“It’s important our guys realize that you don’t get unless you give.”
Eli and his family have been on the receiving end of a multitude of opportunities, including a Make A Wish trip to DisneyWorld and a visit to San Francisco 49ers practice last year.
But connecting Eli with local kids who can impact him on a daily basis is something that Ms. Vargas knows will have a lasting effect.
“If Eli can feel any sense of normalcy, we want that for him,” Ms. Vargas said. “To continue to grow our support system is something we are so thankful for. This community has supported us every step of the way, I don’t know where we’d be without that.”
The Friends of Jaclyn Foundation also puts a focus on the entire family, knowing that siblings can be pushed aside when a child is sick.
Israel, a senior at Santa Barbara High, and Noah, a student at Vieja Valley, will both receive hats and be invited to team activities.
“We are adopting the entire family,” Mr. Schuck said.
Eli has not been the only one with a health scare, as Noah started showing signs of similar symptoms earlier this year, pushing the boundaries of Ms. Vargas’ seemingly always positive attitude, which she documented in her blog:
“Right now I am reminded to focus on the positive. But it’s hard, every head pain Noah or Eli have brings me right back to fear and the reality that I have two medically complex children. Both have now been diagnosed with migraines and while many people suffer from migraines, stop for a minute and think about what you would do if out of nowhere your child is in the middle of the grocery store screaming, wincing in pain because something is ‘stabbing, scratching, poking his brain,’ you feel completely helpless.”
Fortunately for the Vargas family, they received a positive prognosis for Noah, with a brain cyst the cause of his pain. Normally, they dissipate on their own.
Through all of the anxiety and sleepless nights, Ms. Vargas has chosen to focus on promoting awareness of the obstacles that families face in battling childhood illnesses.
To have a way to continue that work while her youngest son is showered with love at her alma mater is something she cherishes.
“We will use this as an opportunity to help even more families,” Ms. Vargas said. “I don’t know how the world aligned to allow this to happen at the high school I attended, but it’s super special.”
As they say, once a Don, always a Don.