By Kim Hilsenbeck

Tamara Thomas of Kyle will drive off in a car Tuesday, heading to Houston. She will make that journey knowing she may never see two of her children again. 

But she must go.

In the car with her will be her husband, Joel, and their other two children. They will meet up with Tamara’s mother, then the group will meet with Tamara’s brain surgeon Tuesday evening.

Wednesday morning, after bidding farewell, so long and see ya later to her family — anything except goodbye — Tamara will undergo a risky surgery to remove a pineal cyst from the center of her brain.

She is 33 years old.

“It should be the size of a grain of rice, it’s now the size of a walnut,” Tamara said of the cyst in her brain that likely has been there her whole life.

The pressure from the cyst, which she said doctors told her is not uncommon and normally non-symptomatic, caused her to lose peripheral vision. Only time will tell if the surgery will alleviate that side effect or if the damage is too great already.

Her children, all between the ages of four and 13, say their mom can’t do very much with them because she doesn’t feel well much of the time.

In addition to the cyst, Tamara has something called Ehlers-Danlos syndrome (EDS), an incurable but treatable genetic disorder related to the production of collagen. As a result, she has arthritis.

Tamara homeschools all four of her children. She said while she uses a pre-packaged curriculum, she experimented this year with more independent study, especially for her older children.

They said they’re looking forward to their mom coming home from the surgery, feeling good and being able to play with them and do things she can’t do now.

“Schlitterbahn,” Kyber said.

“Canoeing,” Nathan chimed in.

Tamara said she started feeling unwell about ten years ago. At the time, she had two small children, daughter Kyber and son Conner, who are now 13 and 10, respectively.

“I struggled for years and years,” she said of the last decade of her life.

Hope is now within her grasp. But it hasn’t always felt that way.

With symptoms that presented similar to MS, Lupus and Parkinson’s, Tamara said she also had heart problems, headaches, neck aches and a general feeling that something was very wrong.

 “I would black out and my heart was racing at 200 beats per minute even when I was resting,” she said.

But her doctors in Arkansas, where she and Joel lived at the time, couldn’t find anything. Doctors put her through a battery of assessments: X-rays, MRIs, cardiac tests, lab work.

“I had test after test,” she said, “and the call came back normal.”

A family portrait hangs on the wall of the Thomas’ home in the Indian Paintbrush neighborhood in north east Kyle.

The photo shows Tamara and Joel when they lived in Arkansas and only had two children, Kyber and Nathan. The couple are dressed in cowboy garb, complete with hats.

“That’s when we lived on a farm,” Kyber said.

She still has memories of horses and other farm life.

“Joel was a cowboy before he was an RN,” Tamara said with a laugh.

Today, he is an RN at the Veterans Administration hospital in Austin.

As the years went by, she and Joel had two more children, Nathan and Josiah, now 7 and 4. All that time, her symptoms worsened.

 “The doctors were telling me it was all in my head,” she said. “Yes, there is something wrong with your heart, they’d say, but they couldn’t connect it to anything else.”

Little did she suspect at the time the problem was indeed in her head.

Tamara said medical professionals couldn’t find any lesions in her spine or brain.

“I have the imaging from that time and no one saw this mass in the middle of my brain,” she said.

Why?

“Because it’s not in brain tissue,” she said.

That mass wouldn’t be something doctors paid attention to until several years later.

Medication seemed to bring her racing heart down to relatively normal. But Tamara knew deep down something was still wrong.

One doctor even told her she was just really tired from being a mother.

“That’s what they kept telling me,” she said.

Near the end of 2011, things got especially bad.

“I thought my head was going to explode, my heart wouldn’t stop racing, I was out of breath and my muscles were weak,” she said.

It became harder on Tamara to do simple tasks.

“We had four kids in a three-story house and I couldn’t even tuck them into bed anymore,” she recalled.

Somewhere along the line, Tamara stopped telling Joel about her symptoms.

“People were getting tired of hearing about it, even my husband,” she said. “It’s an invisible illness. I don’t look sick. I don’t look unhealthy.”

Eventually, Tamara tried to cope with her medical battle privately.

“We did come to that point where we said let’s just move on and I kept to myself and tried to hide it from him,” she said.

Joel’s reaction to her diagnosis of a pineal cyst was a combination of thrill, hope and fear.

“He remembers what I used to be like; I was a lot different,” she said. “He’s excited but also very scared of losing me.” 

On the bright side, she said Joel no longer thinks she is a hypochondriac.

Through a series of moves, the Thomases ended up in Texas in 2013 due to a family emergency.

Joel’s sister, at 35, had a massive, life-threatening stroke. The lasting effects from the stroke necessitated the entire family, including Joel’s parents, move to Austin to take care of her.

On the trip to Texas, Joel and Tamara detoured to Arkansas.

“I was hospitalized but no one would confirm the mass was the problem,” Tamara said. “I had elevated pressure without excess fluid.”

While in Arkansas, the MRI showed the mass in her brain was now twice as large.

“I was in the cardiac ICU, and they did more testing and monitoring,” she said.

Tamara connected with someone whose daughter had an enlarged pineal cyst and had experienced many of the same symptoms.

Through an almost perfect domino effect, Tamara found her way to Dr. Dong Kim at Memorial Hermann hospital in Houston.

One of a handful of neurosurgeons who perform the risky brain surgery to extract a pineal cyst, Kim is the chief of neurosurgery for Memorial Hermann. He is also a professor and chair of neurosurgery at UT Health Medical School.

A visit with Kim confirmed the cyst, which was now about two centimeters large. The decision to operate was not an easy one, but Tamara and Joel said they researched and prayed and decided to move ahead, confident in her surgeon’s skill and success rate.

This Wednesday morning, Tamara will put her brain in the hands of Kim. While the outcome is unknown, they believe in him and say their f taith is strong.

Aside from the many risks, such as blindness, and potential complications, along with the very real possibility of death, Tamara and Joel said medical bills are starting to pile up.

“They told us to bring $5,000 with us to the hospital,” she said. “The operation overall will cost upwards of $200,000.”

The Thomases have health insurance, but it won’t cover everything. That cost also doesn’t include whatever care and rehabilitation Tamara may need following the procedure.

Friends set up a crowdfunding website for the Thomases, hoping to raise enough to offset at least some of the larger expenses.

Though they already reached their initial $5,000 goal, Tamara said unfortunately the couple had to use some of that money for other medical bills and medication.

But Tamara is trying to put all that aside and just enjoy time with her children.

“My four-year-old comes up and ask me if I’m going to die,” she said. “These last few weeks have been really hard. They’re having a harder time than they’re letting on.”

The children are in counseling to discuss the issues. Tamara believes it’s helping them deal with their fears.

“We’re taking discussion to a deeper level than we thought we needed,” she said. “They talk about the surgery. I know they’re affected.”

She added, “And they’ve been real boogers to deal with.”

Her boys are acting out and her teenage daughter is spending more time alone in her room, which is unusual.

“You can tell it’s bothering them,” Tamara said.

And though the situation and impending surgery bothers her, too, Tamara said she’s doing a lot of things she didn’t think she would.

“When I went in to say goodnight [recently], I recorded our bedtime routine. I sang ‘You are my sunshine’ with my four-year-old, and ‘Jesus loves me’ with my seven-year old,” she said.

Then she told her husband, “If you need to, you make copies of these for bedtime.”

She paused.

“I’m taking more pictures, saying more yeses and less nos,” she said. “I’m trying to make the memories and make sure they have things to hang on to.”

Her voice catches a little.

“If I can’t see or talk when I get home — OK, at least you’ll have the video of me,” she said.