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Genesis bent down and opened her arms wide as her daughter, Amalia, leaped toward her. With tears streaming down her face, Genesis cried out with emotion as she kissed and held her daughter for the first time in 21 months.
Genesis and her husband, Jan Louis, and their twin daughters, Janelle and Amalia, were back in Puerto Rico together. They were united again after being separated in 2021 when Janelle was diagnosed with brain cancer. The toddler and her parents traveled nearly 2,000 miles to St. Jude Children’s Research Hospital for treatment. Amalia stayed on the island with her grandparents.
“Our biggest mission was to reunite the two of them, (and) to get to our house and see our family, too,” Genesis said. “It was like we were holding our breath, and we were finally able to breathe again.”
They were together after so many months of fear and worry. In just a few moments, they watched as Amalia and Janelle, the two little girls who shared a womb for nine months, saw each other in person again. They were 3 years old now and had been separated longer than they had lived together.
Amalia was curious as she extended her arms to Janelle.
“Look, that is Janelle,” Amalia was told.
Amalia later said “Hello” to her twin, and tried to give her a high five, but Janelle, too tired and sleepy from the trip, was not able to return the gesture.
Months later, the sounds of little girls playing, listening to music, getting into mischief, walking and crying are daily reminders that life is slowly getting back to a new normal. Janelle and Amalia, who are energetic twins, seem to develop in new ways constantly. Janelle, who continues to recover, is still learning to walk and talk. She often holds an adult hand to help her with her steps. And Amalia’s vocabulary and personality grow every day.
“Janelle is learning from her sister, and vice versa and (it) is very satisfying for us as parents, and we can’t ask for anything more,” Genesis said.
Janelle and Amalia were unexpected bendiciones or blessings. Twins run in the family, but the last pair was born more than two decades earlier. When they were told the pregnancy resulted in two babies, the couple was shocked and elated.
After their birth, Janelle and Amalia were doted on by their parents as well as their maternal and paternal grandparents. They were las niñas — the little girls who always had someone willing to feed them, hold them and kiss them.
Genesis and Jan Louis noticed their different emerging personalities and were filled with pride. They took extra care not to compare.
The girls celebrated their first birthdays and were growing and meeting developmental milestones. They began to sit up, stand, then started to move on their own as they leaned and held on to furniture.
And then Janelle began to regress.
She no longer sat up and instead leaned or fell over. The same with standing. She began to vomit excessively, and then she fainted.
A trip to the emergency room and a CT scan later revealed a tumor the size of a golf ball in her brain. A medulloblastoma, a brain tumor of the cerebellum, the doctors told the stunned parents. The cerebellum controls balance and coordinated movements.
Genesis and Jan Louis felt like their whole world fell apart.
“We looked at each other and it felt like this was not real, this could not be happening, my daughter can’t have cancer,” recalled Jan Louis. “I asked God to give it to me. I’d rather give my life for my daughters than spend one day seeing them suffer with something so disastrous like cancer.”
Janelle underwent a 14-hour surgery in Puerto Rico to remove the tumor. She would need additional treatment and was referred to St. Jude. Genesis and Jan Louis knew of the scientific breakthroughs made at the research hospital, in part because Genesis’ father, Jaime, had been a long-time donor.
When St. Jude opened in 1962, childhood cancer was largely considered incurable. Since then, St. Jude has helped push the overall survival rate from 20% to more than 80%.
“Our hope was a little bit restored,” Genesis said. “We heard good things of St. Jude, and if we had a chance to treat her there, she would have a little bit more of a chance.”
One week after Janelle’s diagnosis, her parents packed their suitcases and traveled to St. Jude.
Genesis had never been away from Amalia or her parents for long periods, and she felt she had left her support system back in Puerto Rico. She and her husband knew no one in Memphis.
The couple knew that St. Jude had treated children with the same brain cancer. The St. Jude Brain Tumor Program is a worldwide leader in medulloblastoma therapy and research.
But Genesis worried how Janelle would react to the treatment.
“The hardest thing that we went through at St. Jude is not knowing what we were going to face,’’ she said as her daughters played and slept just a few feet away in a playpen in their living room.
Genesis said that at St. Jude, Janelle’s treatment included 16 months of chemotherapy and then six weeks of proton radiation therapy. Because Janelle’s immune system was weakened, Genesis and Jan Louis did not go back to Puerto Rico for visits, because they didn’t want to expose Janelle to anything that could make her sick. When they arrived at St. Jude, COVID-19 was still a pandemic.
Instead, Genesis and Jan Louis stayed connected with their family and Amalia via video calls.
While in treatment, Janelle also received physical, occupational and speech therapy at St. Jude. As weeks and months passed, Genesis and Jan Louis watched their girls grow in different ways miles from one another.
When doctors told Janelle’s parents there was no evidence of disease, they prepared to return to Puerto Rico to Amalia and the rest of the family.
When Genesis’ parents, Jaime and Irma, found out that Janelle was coming home a few months after the girls’ third birthday, they planned a celebration. The grandparents waited in the family’s house with a meal that included traditional Puerto Rican food. Arroz con gandules (Puerto Rican rice with pigeon peas) and pernil (slow roasted pork) were on the menu.
The family dog, Abby, was also excited about the homecoming, barking uncontrollably while they were outside and wagging her tail at the sight of her owners when they entered the house.
No one knows how long Janelle’s recovery will take and what long-term effects she may have, but her parents see gains all the time. Janelle will visit St. Jude for regular checkups every three months. She goes to physical, speech and occupational therapy in Puerto Rico arranged with the help of St. Jude.
Genesis and Jan Louis initially had been apprehensive about leaving Puerto Rico. Now they feared being far from the doctors and nurses at St. Jude who had become their support system. But they knew it was time to leave and resume life with both girls.
“It makes me so happy to see them together, playing together, snuggling when sleeping,” Genesis said. “Our prayers were answered, and being able to reunite Janelle with her sister, as well as curing Janelle, were my greatest wishes. And being able to do that, I couldn’t ask for anything more.”