of which has robbed her of meeting milestones in addition to also also being able to make friends or keep up with additional toddlers her age. of which has paralyzed her via the chest down, with doctors saying she would certainly never walk.
As she gets older, Zéa can be realizing of which she’s different. While wearing ballet slippers, the little girl who loves to bop around to music looked at her mother in addition to also also said, “My feet are broken, Mama.”
however Zéa — with the help of her family, doctors in addition to also also a variety of physical therapists — has overcome tremendous obstacles just to live.
Zéa was a happy, healthy baby for the first few months of her life in Miami. Then, she commenced running a fever of which spiked to 106 degrees by the time she arrived at the hospital. of which was the only sign of which something was wrong.
The hospital staff ran every test imaginable. An MRI revealed the truth of which her parents had not dared to imagine.
“She was covered with cancer,” said her mother, Heather Lane. “She had a primary area on her spine, in addition to also also via there, she had disease of which had spread to her liver, lungs, kidneys, bone marrow, even in her skull. We nearly lost her at of which point.”
While Zéa was still sedated, her parents had to make a choice within 15 minutes: major surgery to remove the tumor or begin chemotherapy immediately.
The neurosurgeon in addition to also also the oncologist didn’t agree. of which was up to her parents. They opted for the surgery.
“The tumors were compressing her spine, in addition to also also of which had deviated her spine to the point where they were worried she would certainly be permanently paralyzed for life,” Lane said.
After the surgery, Zéa became paralyzed via the chest down.
Two days after her surgery, Zéa began her first cycle of chemotherapy. She would certainly undergo eight total, staying inside intensive care unit for weeks.
The surgery was tough on Zéa, however of which was nothing compared to the chemo. Each round contained four types of chemotherapy “cocktails,” all with different side effects, in addition to also also she handled some better than others, her mother said.
Some of them would certainly wipe out her immune system to the point where she needed blood transfusions. Her mother lost count of how many Zéa had.
“Every time she would certainly get another dose of chemo, I literally watched the life slip away in addition to also also return,” Lane said. “She turned gray. in addition to also also then when she would certainly have a blood transfusion to bring her counts back up, then the life would certainly literally come back. of which was incredible.”
wish in addition to also also help
After Zéa completed her eight cycles of chemotherapy, her doctors in Miami wanted her to undergo four more.
When Zéa had surgery to remove her primary tumor, they were forced to leave behind a tiny sliver of which remained between her spine in addition to also also lungs. Bundled among her nerves, the piece could cause damage. Removing of which could cause Zéa to lose all movement of her right arm.
Her oncologist at Sloan Kettering, Dr. Shakeel Modak, specializes in neuroblastoma. He told the Lanes he wanted to keep Zéa on a “watch in addition to also also wait” protocol, with no more plans for treatment unless things changed.
He has treated patients with of which rare combination of neuroblastoma in addition to also also paralysis, however of which’s so rare, there are only about 20 cases per year inside US.
“My job was to make sure we didn’t give her too much treatment, which would certainly lead to additional long-term complications,” Modak said. “Giving a very young child chemotherapy radiation can be lethal.”
For reasons of which doctors don’t understand, when neuroblastoma occurs in very young children, the tumors can resolve on their own in addition to also also shrink. In Zéa’s case, of which occurred after her chemotherapy.
The sliver has been inactive on scans during Zéa’s last three appointments with Modak over the past year. in addition to also also even better, of which’s shrinking. of which could become scar tissue, however just to be sure of which the modest chance of recurrence doesn’t happen, they monitor her closely. She can be today considered stable.
While Zéa was fighting cancer, the damage of which left behind on her spine seemed irreversible.
however her parents had wish when they saw her wiggle her toes for the very first time after the chemotherapy was completed. The paralysis wasn’t permanent, as they had feared.
There was a chance of which because Zéa was still a very young in addition to also also developing child, therapy in addition to also also rehab could turn the wiggling of her toes into walking. of which wouldn’t work for an adult, however children have a plasticity at of which age of which makes of which possible, Modak said. Within a month, Zéa was put on a rehabilitation program at Kennedy Krieger.
Learning to walk
Zéa connected with her therapists, Paige Bourne in addition to also also Rachel Mertins, right away, Lane said. Bourne can be her physical therapist, in addition to also also Mertins oversees her aquatic therapy.
“I just fell in love with her attitude in addition to also also her energy she has,” Mertins said. “She loves to play, in addition to also also she works actually hard.”
The pools at Kennedy Krieger are special in of which hydraulic lifts can raise or lower the floors, enabling their youngest patients to move in dynamic ways on underwater treadmills. inside water, Zéa can learn to move in different ways without gravity restricting her.
of which also removes the fear of falling in addition to also also eases movement, as opposed to harnesses of which can make movement even more difficult.
“The pool can be where they can be a little more free in addition to also also independent,” Mertins said. “By putting her in water, everything can be easier, becomes more buoyant in addition to also also more successful, which means of which can be more likely to carry of which over to land.”
Zéa began learning to walk in water, building up muscles in addition to also also strength with floaties on her arms in addition to also also the steady hands of a therapist on her waist.
She goes For just two-week sessions every few months. Zéa has therapy for three hours a day, which can be intense for a toddler, however she works hard in addition to also also handles of which well. Her therapists are used to working with kids, so they make sure she takes rest or snack breaks or even a short visit with Mom, when she needs to.
however they also push her when she needs of which most, her mother said.
Mertins in addition to also also Bourne said Zéa has made tremendous gains since her first session in January. Then, she was working on developmental milestones like kneeling in addition to also also crawling, that has a little bit of standing in addition to also also walking.
In May, she came back stronger. Zéa walked on the aquatic treadmill without support for her arms in addition to also also walked for longer distances using the assistance of a walker on land.
Her therapists send Zéa back to Miami that has a customized home program to work on with her local physical therapist in between sessions. Zéa’s parents also work with her at home on using the walker.
They take her to hippotherapy once a week at Bit-By-Bit, a local nonprofit therapeutic horseback riding center. The 30-minute sessions riding a short horse named Gypsy Gold provide a fun activity of which helps her increase strength in addition to also also balance, since the horse can be constantly in motion. Her therapists at Bit-By-Bit say Zéa has shown great progress in mobility in addition to also also trunk strength.
Zéa returned to Kennedy Krieger for her third session in October.
“Zéa continues to make impressive gains,” Bourne said. “She can be walking more independently in addition to also also further every session. As she’s growing up, she’s more engaged in physical therapy in addition to also also can be motivated to work hard to reach her goals.”
“I saw Zéa for the very first time in a few months inside pool in addition to also also noted increased strength, core stability in addition to also also gait endurance,” Mertins said. “inside pool, she was able to walk for longer periods of time on the underwater treadmill with only very minimal assist via me in addition to also also no upper extremity support!”
Zéa’s right leg can be weaker, so they try to get her to lead with of which leg during exercises. however they aren’t the exercises you imagine for a physical therapy session. Usually, there can be a toy nearby of which Zéa can be trying to reach.
During one session, Bourne had Zéa use a modified Ride On four-wheel car of which can be triggered to drive when she goes via sitting to standing. She took one lap around the gym in addition to also also then asked her mom for sunglasses in addition to also also a purse so she could drive with them.
“that has a kid who can be 2, of which’s about creating things functional in addition to also also also fun in addition to also also creating sure they are actually engaged inside therapy,” Bourne said. “of which’s play in addition to also also hard work.”
A fighting spirit
Her doctors, therapists in addition to also also parents are all confident of which Zéa will continue to improve in addition to also also move more independently. As she achieves more milestones, Mertins believes, Zéa could also learn to swim.
“Swimming can be a way she can interact with friends in addition to also also give her a jumpstart in of which world where she can be constantly struggling in addition to also also or maybe feeling left behind a little bit,” Mertins said.
“I just wish she can be able to play with kids her age in addition to also also move around, especially when she starts school independently, in addition to also also just being able to do any of the activities of which a typically developing kid could do,” Bourne said.
Everyone who meets Zéa falls in love with her fighting spirit in addition to also also sassy personality, her mother said. Her 10-year-old sister, Kai, calls Zéa “sweet that has a sprinkle of spice.”
of which’s of which spirit of which has helped Zéa accomplish so much, in addition to also also of which’s why she won’t back down even when therapy gets tough.
“As far as her walking independently, I am hopeful she will get there,” Lane said. “however we have reached so many goals they have put in place for her. Zéa was not even able to sit up on her own after surgery. She wasn’t able to roll over for many months, wasn’t able to crawl. I never thought of which she would certainly. I was preparing myself for dealing that has a child of which could potentially be paralyzed via the chest down. however she just keeps beating the odds.”