One-year-old Malachai Johannes fighting stage IV neuroblastoma

A benefit to help the family with medical costs to be held Friday, Nov. 8

By Tina SnellStaff Writer

One-year-old Malachai Johannes of Buckman has gone through more in his short lifetime than many will ever experience.

Malachai has neuroblastoma, a cancer that originated in the adrenal glands, the most prevalent area for it to first present itself. It is a cancer which develops from immature nerve cells. While it is one of the most common cancers found in infancy, it is rare with about 650 cases per year in the United States. Most of the cases occur in children under the age of 2.

Tumors are one symptom of neuroblastoma and, depending on where they are present, will determine symptoms. Abdominal tumors, or lesions, will cause a swollen belly and/or constipation. Tumors in the chest may hamper breathing and those around the spinal cord may cause weakness.

Many times the cancer has spread before symptoms appear.

Stage IV neuroblastoma means the cancer has spread to lymph nodes, bone marrow, bone, liver or other organs.

Malachai Johannes
Malachai Johannes

Malachai, who turned 1 Sept. 29, was diagnosed in July.

“When he was born, he spit up more than usual,” said Jenna. “At about four months, subdermal lesions (tumors) appeared on his back. Plus, he was not gaining weight, even though he was eating normally.”

Malachai was hospitalized for a week in St. Cloud. He was given an increase in calories plus physical therapy.

“At 8 months, he had three lesions,” said Jenna. “The doctors told me they were probably not cancerous.”

On July 24, Malachai had two of the lesions removed to be biopsied. During that surgery, the doctors found a larger tumor in his abdomen.

He was given a computed tomography (CT scan). Afterward, Malachai’s parents were told of the diagnosis.

“Malachi had some of his bone marrow removed and it showed the cancer had spread,” said Jenna.

The CT scan also showed cancer in the liver, adrenal glands and abdomen. The biopsy showed the tumors were also cancerous.

“The doctors said not all the cancer cells in the tumors were bad cells,” said Jenna.

Malachai is currently going through chemotherapy and radiation injections at Children’s Hospital in Minneapolis. He will have eight trials, three weeks apart. Some of the trials will last three days, others one day.

“It all depends on the medications he is receiving,” said Jenna.

Children’s Hospital doctors have told Malachai’s parents, Jenna and Nigel Johannes, he has about a 65 percent chance of recovery.

Malachai’s routine is arduous.

His parents need to give him injections to raise his white blood cell count. When the count is low, chemotherapy must be postponed.

The testing and treatments are non-stop. Blood labs are taken two times a week at home. Malachai receives his nourishment through a feeding tube for 12 hours each night. Orally, he is given formula with extra calories.

“Solid food makes him nauseous,” said Jenna. Malachai weighs just under 15 pounds.

Scans and bone marrow tests also continue.

“With most of the tests, Malachai is sedated,” said Jenna. “For hours before that, he is not allowed to eat. That’s one of the reasons for his low weight. He is also nauseous most of the time.”

There is occupational therapy twice a week, physical therapy once a week, speech therapy once a month and early education classes once a week.

Jenna said that it’s tough to watch the doctors put him out.

“The worst part of this was during the first 10 days. Malachai had four surgeries to remove the lesions, install the chemotherapy port and to put in a feeding tube. The last was the worst because of the pain it caused Malachai. He was miserable and couldn’t sleep,” Jenna said. “His next surgery is Wednesday. He will have his abdominal tumor removed because it’s not shrinking. He will also have his adrenal tumor removed. That’s the largest lesion.”

Jenna, also the mother of Mariah, 6, and Morgan, 3, is being pulled in many directions. While Morgan comes with her to Children’s Hospital, Mariah is in school at Pierz Pioneer Elementary and stays with family.

“There is homework to help with, medical and dental appointments for all of us and more,” she said. “I have family and friends to help, and Nigel. But it’s a lot for me.”

Jenna and Nigel are separated.

Two years ago, Jenna was involved in a work-related accident and was hospitalized on and off for a year. As a result, she had seizures, sometimes up to 17 a day. Those are now controlled by medication, but she still gets tremors and has focus issues.

“I have three – four medical and therapy appointments of my own each week,” she said. “It’s been hard to get through each day, but I am doing the best I can.”

Jenna said her children’s smiles get her through each day.

“That and their laughter,” she said. “There are days when you wouldn’t even know Malachai is ill. He has a smile that grabs your heart. It makes all this worth it.”

In the beginning, when Jenna would cry, her daughters would hold her.

“They, too, have had a rough two years,” she said.

The benefit for Malachai and his family will be held Friday, Nov. 8, at the Little Falls VFW, located at 1210 Third Ave. N.E., from 4 p.m. – 9 p.m. Homemade chicken dumpling soup will be on the menu.