By Tim Fleischer Editor-in-Chief
New Year’s Eve is typically a night of celebration, looking back on the past 12 months and looking forward to the next 12.
But for Trey and Jessica Lovett who have called Salado home since 2009, it was the first indication of a serious and life-threatening condition for their 10-year-old son Houston.
“This was a blow out-of-the-blue,” Houston’s mother Jessica said of the New Year’s seizure, adding that he had no other health issues and no family history of seizures.
“He went from having short absence seizures to many-minutes-long tonic-clonic seizures in a matter of months,” she said. “He also began to have tyrannical headaches and simple partial seizures where his hands or feet go numb and he loses motor control unpredictably.”
She describes her son as passionate, loving, spirited and brilliant.
He is — she says — a “budding violinist, pianist, engineer, scientist, Chess-enthusiast, NASA fan, and Lego Master Builder!”
“He is full of verve,” she adds, with “opinions on everything, theories on how to make the world work better, Grumpy Cat jokes, and love for his Creator.”
Houston also has Asperger’s Syndrome, which “he always tells people that he actually enjoys having,” she says.
After months of testing, the Lovetts learned that Houston has a cerebral cavernous malformation (CCM). It is right next to his dominant motor cortex. “Past hemorrhaging has caused brain tissue around the CCM to be irritated and permanently stained, which in theory has begun the seizures outbreak,” she said.
“He has a benign brain tumor in a very difficult to operate on location,” Jessica said. “He has been bravely undergoing many, many tests and seeing the most special specialists we can find to try and find out the safest way to solve the problem and see if there is any way to surgically remove the tumor without high risk of paralysis on Houston’s right side, or worse.”
“We are trying to not think of the ‘or worse’ part right now,” she says, but for any parent who has had a seriously ill child knows, this can be one of the hardest things to do.
“Nothing can prepare you for seeing your child have a tonic-clonic (previously called “grand-mal”) seizure,” she said. “There isn’t a warning to tell us when to grab him before he falls to the ground, so we are just on edge constantly day and night. If his seizures are past the two minute mark, we are supposed to call EMS due to long seizures being an indicator of bleeding.”
Equally heartbreaking are the moments following a seizure, when Houston can’t remember his name and doesn’t recognize his parents’ faces.
“Ten-year-olds aren’t crazy about never getting to take a shower alone or close their bedroom door, so the loss of privacy and independence makes us feel like crazy helicopter parents,” she said.
She admits to noticing the glances and silent judgment of people who see her “holding the hand of my child that’s almost as tall as I am and hovering so.”
She brushes that off easily, however, but admits, “What bothers me is protecting his sweet head from trauma which could cause another hemorrhaging event and possibly be fatal.”
The family is in limbo, waiting for a final decision from the neurosurgeon. “We are hoping it will be mostly covered by insurance if it happens by the end of the year,” she said.
The tumor is large — 14 mm — and deep — 4.5 cm. Too deep to be removed with options like a laser ablation. “And he would have to have a craniotomy,” she adds.
“There are not many more horrifying things to say to a parent than ‘By the way, your child needs to have brain surgery,’ and ‘We think it would probably not permanently change their personality or have memory loss but there is a risk of full or partial paralysis,’” Jessica says.
But not having surgery is not much of an option, either, leaving Houston at risk of a second hemorrhaging event, which could be random and fatal.
“We are between lots of rocks and lots of hard places,” Jessica said.
The past seven months have also left the Lovetts between a rock and a hard place financially.
“No matter how many calls you make to try and cover your bases before doing a test or procedure, inevitably there will be a surprise bill (or three) in the mail,” Jessica said.
“We have always prided ourselves of being sort of frugal,” she said, admitting that “when our child started hurting and things started getting scary, we just went full-speed ahead to the tests and the best specialists we could find, knowing that if we were in debt forever, it didn’t matter – all that mattered was saving our Houston and cradling the hope that our lives would get back to normal again!”
The travel and unexpected medical bills not covered by insurance have taken its toll on the family. Recently, the Lovetts established a Go Fund Me campaign to help alleviate the financial burdens of battling a long-term childhood illness.
In just a week, family and friends have donated more than $4,000 toward the $7,000 goal for the Lovetts. You can donate by going to https://www.gofundme.com/houstonhasaproblem.
The medical journey with Houston began with Baylor Scott & White, where his father, William “Trey” Lovett III, is a physician’s assistant at the Salado Clinic.
However, “his team advised us that they are not equipped to deal with this kind of rare tumor that is in such a high-risk area of the brain,” Lovett explained. “We needed MEG machines, specialized MRIs, and more.”
The family has been traveling three hours each trip to Texas Children’s Hospital in Houston, which has the #3 pediatric neurology department in the nation, according to US News and World Report.
Jessica writes and is a pet sitter through the website rover.com. This has given her the ability to travel with Houston and his younger sister Aurora Joy to the hospital for appointments, tests and consultations.
Jessica home-schools the two. She adds that Baylor Scott & White “has been very understanding so far for Trey to be out when he comes with us.”
“We have done many hours of school in hospital waiting rooms and on the long car rides to Houston for tests and appointments for him and for Aurora when she has to tag along,” Jessica says, “We carry backpack loads around with books, notebooks, and art supplies to make the most of our time. Taking it along isn’t really strictness as much as the fact that schoolwork is enjoyable for us and keeping it going is part of the fight to keep our comforting, familiar routine intact in all the chaos.”
Houston even shares some of his knowledge of history with doctors and nurses caring for him. He “gets a lot of his confidence from his academic ability,” Jessica says, “but with the combination of the anticonvulsant medicines and the effect of the seizures on his capacity to focus, it has set him back quite a bit. He can’t remember things as well, like math facts, and it is extremely frustrating to him.”
“It is also annoying when he finishes building a Lego masterpiece and then has a seizure and it crashes to the ground when he is unconscious, only to wake up to a pile of pieces,” Jessica said. “He hesitated to even play his violin for a long time out of fear that he would drop and damage it when a seizure hit.”
Houston clings to routine and for the past several months, there has not been much of that for the Lovetts. Some of this, his mom says is just personality and some is symptomatic of Asperger’s Syndrome.
Houston has a need “to control what’s going on around him, so it has been especially corrosive to him for his body to randomly do things he doesn’t want it to do.”
Surgery could give him freedom from the random seizures and allow Houston to return to the routines of childhood that he craves and deserves.
Routines like building Lego Masterpieces, playing the violin, beating everyone at chess and sharing interesting historical tidbits he learned that day with whoever may be in earshot.