Kleefeld toddler in ICU due to cancer prognosis

Eighteen-month-old Aliyah Hernandez had trouble breathing and was coughing so much she was on the verge of vomiting. Her mother, Ashley, took her to multiple doctors to see what was wrong before she got news that every parent dreads hearing, “Your daughter has cancer.”

“We’re just honestly trying to hang in there. It’s been very tough. It’s been very hard. We’re trying to stay positive that our daughter will beat this and I’m not going to lie it’s been hard,” said Ashley Hernandez, Aliyah’s mother.

Hernanadez took Aliyah to the doctor about four weeks ago with a fever and a cough. She was told her daughter had bronchitis and was given medication. When things didn’t change and seemed like they were getting worse she took her daughter to her pediatrician who told Hernandez that her daughter had a strep throat and was given medication.

When things continued to get worse, Hernandez took her daughter to the emergency room at De Salaberry District Health Centre in St Pierre where she said she was almost turned away.

“She was so sick and her breathing was going into her ribs and she was distressed and the nurse looked at me and said, ‘I’m sorry, but we’re full.’ I looked at her and I said, ‘My daughter is very sick and she needs to be seen right now.’ And they were like, ‘Emergency is full.’ And I said, ‘I’m sorry, but what do you want me to do with her. Do you see her right now? Look at her.’”

Hernandez was told she could stay if there was a doctor willing to see her daughter. The doctor on call did see Aliyah and issued an x-ray, which showed Aliyah’s heart was a little bit bigger then it was supposed to be, but the doctor wasn’t sure. He told Hernandez it was pneumonia and gave her medication and puffers.

The next day, Hernandez saw her daughter was still getting worse with laboured breathing and it was then that she decided to take her daughter to Children’s Hospital in Winnipeg. While at Children’s, a CT scan was done which revealed a neuroblastoma behind Aliyah’s heart and lungs. One in 7,000 children are diagnosed with the cancer every year, according to the Mayo Clinic.

“The oncologist said it’s a curable tumor, but it’s going to be a very long journey to get there because of how big it is and where it is. But as of right now, we’re just taking it day by day because she’s in critical condition and she’s very sick. There’s days when it’s minute by minute and days when it’s hour by hour,” said Hernandez.

As it was too risky to do a biopsy in Winnipeg because Children’s Hospital doesn’t have an ECMO machine, which acts like the heart and lungs of a child, the Hernandez’s went to Edmonton at the Stollery Children’s Hospital for the procedure.

“Sometimes I think doctors just have so many patients and they are like here’s meds, here’s meds, here’s meds. They just throw it at you…I know that Children’s Hospital said we did all the right things; same with the Stollery (Children’s Hospital) in Edmonton. They were like, ‘It’s not your fault. You did exactly what every other parent would have done. She wasn’t feeling well you took her to the walk-in you took her to the doctors you took her to emergency. You’ve done all the right things,’” said Hernandez.

For the past three weeks, Aliyah has been sedated and on an ECMO machine as she received one round of chemotherapy and three rounds of radiation. She is sedated so that she doesn’t pull out any of the tubes in her body and to keep her comfortable.

Hernandez said she came out of her sedation once and the nurses said she looked a little scared and uncomfortable. The doctors can’t operate on Aliyah because of the position of the tumor and because blood vessels have wrapped themselves around it.

“Now she’s still on the ECMO until she becomes more stable until the tumor shrinks because it’s compressing on the heart and lungs. Then she got an infection and became (septic). So she’s still fighting that. Her last few days have been better than the weekend but she’s still very, very sick.”

“We haven’t held her in 16 days,” said Hernandez.

Ashley and her husband, Louis, have been staying at Ronald McDonald House while Aliyah undergoes her treatment. Their four-year-old son, Benjamin, has been staying with Ashely’s parents in Steinbach until the Kleefeld couple can return home with their daughter.

As the couple can’t work right now and some of Aliyah’s medications are not covered by Manitoba Health, a Go Fund Me page was created to support the Hernandez’s. To date, it has garnered more than $30,000.

“It’s honestly left us speechless. We’re beyond grateful for the community support. We honestly didn’t think it would get that far. But we’ve been blown away and we’re so thankful for everybody,” said Ashley.

It will be weeks before the Hernandez’s can return home as Aliyah’s tumor needs to shrink and she needs to be stable enough to come off the ECMO machines.

“It’s very hard to describe how it’s been,” said Ashely. “It kind of feels as if you’re just reliving a nightmare over and over and you’re stuck in it. Just when you think she’s kind of OK we’re going up than we have five steps backwards, right? So, that’s been really hard.”