“They say when life gives you lemons, you make lemonade. We make lots of lemonade,” said Sheila Talamantez on her family’s current health situation.
She and husband Johnny Talamantez of Pleasanton are the parents of 17-yearold Taylor, a six-year cancer survivor. The family is preparing for a long road ahead. Five of their eight children will undergo preventative surgery soon, since they carry a cancer gene that runs on Sheila’s side of the family.
“Like my husband says, we give all our faith to God and the doctors. Those two literally have our kids in their hands,” said Sheila.
It was September of 2015 when I first wrote about Taylor Talamantez, a student at Pleasanton ISD who was diagnosed with a brain tumor, medulloblastoma, when she was 12-years-old. At the time, Sheila was on a mission to spread awareness about childhood cancer.
Sheila and Johnny’s children are: Ashley, 23; Alyssa, 21; Johnny, 18; Taylor, 17; Jason, 14; Tanner, 12; Tye, 10 and Jaxson, 4.
Taylor had just turned 12 when she began leaning to one side. She also fell down at Sea World, which the family attributed to Taylor breaking her toe the month before.
The school nurse called Sheila after noticing Taylor looked like she was going to have a seizure after P.E.
After a visit to the pediatrician and an MRI, the family was told Taylor had a golf ball-sized mass in the back of her brain. They did not yet know if it was cancer or not, and would have to wait until it was removed to know. They also would not know if it spread until a lumbar puncture was done.
After the operation, Taylor cried and told her parents, “Just fix me.”
The family learned they were just days away from losing Taylor, as the running during P.E. aggravated the tumor.
The family received updates during her 4½ hours long surgery. While the doctors said there was minimal blood loss and they thought all of the mass had been removed, they also said what the family feared– it was cancer.
Taylor had a couple of stitches in the back of her head and stayed in ICU. She asked her parents to rub her legs. They were aware at that point that Taylor could move, but they still did not know to what extent. They asked Taylor to take a couple of steps and she wanted Johnny’s parents there. So Taylor met with them and walked, although still offbalance.
After receiving a huge binder filled with valuable information and lists of doctors, they learned Taylor would need radiation and chemotherapy to lessen the chance of it returning.
They then learned the cancer had not spread. Taylor had a port placed by her collar bone and began radiation.
She did one year of chemotherapy and the family tried occupational and physical therapy. However, they did not qualify for Medicaid and the co-payment for each visit was not something they could continue financially. So they had Taylor do some activities at home to help.
At that time, Taylor was a freshman at Pleasanton High School, aided by a walker. It marked the first year for Taylor to return to school full time, rather than half a day.
Taylor’s treatments have had lasting effects on her health. She suffers from hearing loss, memory loss, vision loss and may never be able to have children. She also tires easily.
Taylor is now 17 and a full-time senior at Pleasanton High School. She was crowned the 2018 PHS Homecoming Queen during festivities on Sept. 28.
“She worked hard those six days. We passed out candies. We made T-shirts. It just reminded me that an average person can still have these goals,” Sheila said.
While Taylor was not nervous, her parents, aunts and uncles and other relatives were.
“She just proved to me that she has a heart of gold. She amazes us every day, even with that,” said Sheila.
Taylor’s boyfriend Mark Chapa was crowned 2018 PHS Homecoming King.
“He is amazing. He pushes her in the wheelchair. We’ve gone on vacation and he will carry her. He doesn’t mind her little disabilities,” Sheila said.
This past Christmas was Taylor’s last MRI, marking six years of Taylor being clear. Sheila explained there are no more MRIs unless they have a concern.
Taylor still has headaches and they look out for symptoms.
Carrying the gene
When Taylor was diagnosed with the brain tumor, her oncologist told them he thought it was more than a coincidence. The doctor felt there was more to it. So two summers ago, the family was told to get genetic testing done at Santa Rosa Hospital. Taylor was tested for every cancer gene they could think of, just to narrow it down.
“So whatever gene she would come back with, we would test all the other seven kids. So about six weeks later, it came back that the gene that she has is the APC gene. You can get thyroid cancer, colon cancer- all these secondary cancers can come from it,” Sheila said.
“Taylor had a less than one percent chance to get a brain tumor. So that is how she got the tumor, because she was a gene carrier.”
Afterwards, all the children were tested. They found out that Fourth of July that from Taylor on (Taylor is the fourth child), the four boys after her have the cancer gene.
As the gene carrier, Sheila carries some guilt.
“It is a crappy feeling, because I did it,” said Sheila.
The first three children to be born do not have the gene.
Sheila described it as being hit in the gut, hearing on the phone from the doctor, “negative, negative, negative,” followed by five positives.
As a result of their much higher increase in getting cancer due to the gene, the children will have preventative surgery.
The children have also had to undergo procedures usually done in people in their 40s and 50s. They have had colonoscopies and endoscopies, scans of their thyroid and constant blood work, for example.
Every year, the family is required to meet a deductible of $10,000. The family has insurance through Johnny’s employment with Holt Caterpillar.
“He was originally working out of town so we can save money to fix our house and stuff like that, but now that’s on the back burner. It is not just including them, but myself, too,” Sheila said.
There are six of them that need to continue testing annually for the rest of their lives.
The two youngest children do not have to have the scans until they are at least 12.
Twelve-year-old Tanner will have surgery soon, to have his large intestine and colon removed.
Research shows children can generally wait until they are 19 to get their tests.
However, Taylor, Jason and Tanner are closer together in age, so she wanted to keep those three together. At first they were going to wait to test Tanner until he was 14. Sheila pushed the doctor, who came out with tears in her eyes, as Tanner had over 30 polyps.
“She stopped counting after 30. So those polyps can turn into cancer. My brother passed away from colon cancer,” Sheila said. “So right away I said, Okay, we’ve got to do surgery. There is no way I am going to let it sit that long.”
They met the surgeon in September and scheduled Tanner’s surgery in November. Jason is next in December, who will have the same surgery. So once one is recovered and back in school, the next child will have the procedure.
They will wait for Taylor’s surgery, since she is a senior and it will require more for her to catch up. She will have her surgery in the summer.
The fourth child with the gene will be 11 this summer, so he will see the gastroenterologist who can make an appointment to get scoped the next summer.
Sheila said the only way to make 100 percent sure that they do not get colon cancer is for them to get a colostomy bag. Sheila does not feel it is her decision or her husband’s decision to make, so when the children get older they can decide if they want it or not.
After the surgeries, they will continue to get checked every year for cancer in other areas.
“We are stuck for the rest of our lives with tests and surgeries,” Sheila said.
Sheila’s brother Luis Velasquez passed away from cancer in 2016. Her younger brother Kevin Velasquez has tested negative for the gene.
“It is a struggle. I have my meltdowns. I talk to Amanda (her sister-in-law) and my husband about it, but it is a lot,” Sheila said.
Upon sharing the news about the cancer gene, Sheila first told the older three that they were negative.
She asked them not to brag about it, but to just be there for the others.
Sheila finds herself giving in to the other children more and saying yes when they want something.
“We thought it was just Taylor. Now it is times five,” Sheila said.
They are praying that after Tanner’s surgery, they will meet the $10,000 deductible so that Jason’s surgery is met.
Tanner asked, “Okay, mom, we are doing this so that way we can live a long time, right?”
“Yes, that is what we are going to do,” said Sheila.
Tanner was the first to volunteer for the surgery. Jason was the second one to stand up.
When Sheila had her test done, it revealed many, many ulcers and a blood disorder, which she will have to see a hematologist for.
When Taylor was first diagnosed and underwent chemotherapy, etc. Sheila knew it would be a bumpy road for them all. They are doing that again, said Sheila. They are just holding on.
Since there is a chance for her children to pass it on to their children, she would like for them to adopt, but understands it is their decision.
She is an advocate for genetic testing when it is suspected that you carry the gene.
“I look at my brother’s pictures. He had signs and he knew and he just didn’t. He would still be here, if he just did it. I never did it, until it came back that the kids had it. You sit down with all these doctors and they tell you everything that you can have,” Sheila said.
It is expensive, but is required to live, she said.
The surgery the children are having is called a J-pouch, which Sheila had done at age 12 or 13. According to the Mayo Clinic, J-pouch surgery allows a person to eliminate waste normally after removal of the upper and lowest parts of the large intestine.
Unlike Sheila who was cut top to bottom and now has a long scar, her children will have four incisions in their stomach and one in the belly button. They should be in the hospital for about a week and the doctor anticipates about two weeks of recovery after that. The children are thin and other than the gene, they are healthy, explained Sheila.
She hates that the children will have to miss school, but life is more important right now. She hopes that years from now her children will look back and realize their parents made the right decision.
Sheila is thankful for her husband’s support. They married when she was 21 and Johnny was 25.
She has not told many about their ordeal, except for a few family members. They recently told Pleasanton ISD, which the children attend.
“They have been really good with Taylor. So I know my kids are in good hands. They have done a good job with Taylor and helping her out and accommodating her,” Sheila said.
They will have the surgery at Methodist Children’s Hospital. The doctor they are using is the same one who took out Taylor’s port. It just so happens this is one of his specialties.
“This is way better than starting chemo, or doing radiation, or burying your child. I have to remind myself that the doctors say it is 100 percent curable, if you just keeping doing it regardless. Unfortunately, they will have to have surgeries and tests every year, but that is way better than not having your children with you,” Sheila said.
The family lives next door to her brother and his wife, Kevin and Amanda Velasquez. They have always been close. Sheila looks at her children and sees her brother.
“If you need him, he is there,” Sheila said. “We have one street that separates us. We have dinners and barbecues at each other’s house.”
She tries to see the positive and realize that Taylor testing positive for the gene helped narrow down what to test the other children for. In a sense, she saved the other siblings’ lives.
“God gave Taylor the tumor to wake us up.”
Help with a home
Sheila and Johnny took out one loan from the 401K with plans to improve their home, and then Taylor became ill, so they put those plans to the back burner.
Later Johnny volunteered to work out of town. They were hoping to add on to the house that was given to them by their father-in-law who willed it to them. It is an old house with broken windows, a leaky roof and mold. Since Johnny is only home for one day a week, he cannot spend time to fix the roof.
They had to replace the whole floor due to a leak. They do patchwork here and there, and were looking forward to fixing their house. They had the dirt tested and blueprints drawn up, which ended up being a waste.
“You get your hopes up, and then you are back down to saving your kids’ lives and you get depressed because we have a small house. And yes, we chose to have the eight kids, but who would think that we would be where we are now?” Sheila said.
She and her husband wish there was a local Habitat for Humanity program or something similar, and in return she and her children would help another family.
Sheila’s dream is to have a party outside when Taylor graduates.
“We don’t need a big, fancy house. We just want a fixed house, one that doesn’t leak.”
She thinks as each child has their preventative surgery, they will not have a room in good condition for them to recuperate in. You cannot spend money to fix a house with incoming, demanding hospital bills.
“We’re not begging for this help. We can do it ourselves, it is just going to take us a lot longer than two years. We need the help. When you see all these houses going up, what do they do with the extra lumber? What about plumbing school or electrical schools? You would think they need extra hours. We are the perfect case,” said Sheila. “I am not asking for a free house. We just want a liveable house that we can afford to build.”
Sheila said she and her husband can handle doing the sheetrock, the walls and insulation. They are just in need of a good, experienced person in roofing and someone to handle the cement.
If anyone out there is able to help or knows someone who can, they are kindly asked to contact Sheila at 830-570-8573.
Despite it all, she tries to remain positive.
“You learn to adjust. I’m happy and I don’t take life for granted,” Sheila said.
“If you have any type of cancer in your family, get checked. If you can, get genetic testing.”
In their family’s case, the testing was covered because of Taylor’s diagnosis. They did not know it was all covered until their genetic doctor advised them. They were also able to get tested in San Antonio and it only involved a little blood being drawn.
Sheila remains hopeful and looks forward to Taylor graduating. Among the staff at Pleasanton ISD, she is especially grateful to nurse Annette Salinas.
“Every day, this is the fourth year she comes out there with the wheelchair, rain or shine, hot, whatever. She’s out there, gets Taylor in a wheelchair and pushes her to her first period class. She doesn’t have to. She’s got nurse duties. She has a heart of gold, too. She’s done so much for Taylor,” Sheila said.
Taylor reminds them that anything is possible. She helps Sheila see the bigger picture of the importance and value of life.
“I live for my kids. My kids are my world. I don’t regret them. I love them. I can’t stress genetic testing enough.”