Noam’s tortured journey

A paramedic with a son suffering from bone cancer that was put through hell by the health system relates his story in a published diary, and it has a happy end.

By JUDY SIEGEL-ITZKOVICH
Noam Benita (photo credit: Courtesy)
Noam Benita
(photo credit: Courtesy)
A medical and emotional roller-coaster is the best way to describe the war of the Benita family against their son Noam’s bone cancer, the health system bureaucracy and some arrogant doctors.
Moshe Benita – a paramedic and father of 10 living in Efrat with his pediatric nurse wife Ravit – decided to write a personal diary of their travails in 2013, the worst year of their lives. The just-published 119-page, softcover Hebrew-language book is titled Darchei Noam (Noam’s Journey, a word play on their son’s name and the verse from Proverbs referring to the words of wisdom in the Torah as being the paths of pleasantness).
On May 21, nine-year-old Noam complained of pain in his right thigh near the knee, and when his parents felt it, they noticed a lump. Friends and colleagues pooh-poohed it, saying it was surely “nothing,” and even when it was found to be a kind of growth they hopefully assured the Benitas that it was probably benign. But tests showed it was “high-grade osteosarcoma,” an aggressive, solid malignancy in the leg.
It was the same day of a happy family event – the birth of the Benita’s seventh grandchild, a boy.
In a YouTube video that appeared after publication of Darchei Noam, Moshe Benita said: “The message is: Never give up. One can recover even from cancer. It’s a condition for the long-distance runner, a war against disease and bureaucracy.”
It’s not enough to bring documents from the health fund (the name of their insurer is never mentioned), he said. You have to make many phone calls, explain why and have arguments. Find the right people who can move things. Even some hospital social workers didn’t know how to get things done, he declared.
“Don’t waste your energies on little things,” he advised in the video. “We are in a critical phase in the war for his life and to make him smile. The book shows how much one must fight, but it will give hope” to readers, Benita added.
Even though he is familiar with the health system as a paramedic, he recommends “not being a slave to it and to consider each step carefully and voice opposition if needed... Try to decide where the treatments will be given and who will give them. I lost my shame, and when I thought my son needed something, I got up on my hind legs.” Doctors, he added, “are human beings, and they too can make mistakes. So in every case, check things very well that no errors have been made.”
The Benitas rejected all suggestions from friends to try complementary medicine and stuck to conventional medical care.
Try as much as possible to cut the amount of time that the patient is hospitalized, says Benitas, and if it’s important to the child to be at home on Shabbat, insist on the treatments being carried out during the week.
To make a long story short, Noam Elia – who at one point suffered two hospital overdoses of chemotherapy, was sometimes given the wrong drugs and turned blue, and whose limbs were temporarily paralyzed due to treatment – is doing much better and has recovered from most of his disability. “But there is always tension from worrying whether it will come back,” said Benita.
THE MESSAGE that I got from the harrowing read is not discussed by the author at all, but it cries out from the pages: the Health Ministry must ensure that every patient with a complicated condition is assigned a health fund case manager specifically tasked with fighting for him and his family to cut the red tape, speed up vital tests, arrange for second opinions and smooth logistical problems. The lone patient is too sick and helpless to do this, and if there is family support, all the burden falls on them.
The NIS 54 volume is moving, authentic, arouses a lot of tears and a few smiles, offers hope and presents at eye level the horrendous struggle with cancer. It should be read carefully by every hospital director-general and hospital head, senior Health Ministry official, medical school dean and health fund administrator, not to mention patients and loved ones who face the same or similar diseases.
Although Ravit is a nurse at Jerusalem’s Shaare Zedek Medical Center, Noam was inexplicably treated at Hadassah University Medical Center in Ein Kerem and at Tel Aviv Sourasky Medical Center’s Dana Children’s Hospital instead.
The father describes in detail serious shortcomings at Hadassah and a few problems at Dana – but in his foreword singles out for praise Prof. Yehuda Kolander, director of the national orthopedic oncology department at Sourasky, and Prof. Michael Weintraub, head of the department of pediatric hematology/oncology and bone marrow transplantation at Hadassah.
Kolander and his team “always encouraged us and especially Noam, always with a smile on their faces, and convinced us that Noam will again be able to run like all children,” Benita wrote. Weintraub and colleagues “did and are doing all they can to save Noam’s life with pleasantness and endless courtesy.”
But the father/author also voices plenty of criticism over negative events in the hospitals, especially Hadassah. Don’t waste energies on little things, though, is his advice.
High praise is given to Jerusalem’s Zichron Menachem organization that gives outstanding free help to children with cancer and their families, along with Larger than Life and other helpful volunteer bodies.
Most of the chemotherapy was administered at Hadassah, while at Dana in Tel Aviv a “port” was inserted surgically into a major blood vessel to allow frequent blood tests and medication without the need for repeated, painful punctures. This occurred a day after schedule, forcing Noam to fast for many hours until the family were told that a urgent operation had to be performed instead; his operation was rescheduled the next day. They found that many of the anesthesiologists at Sourasky had previously worked at Hadassah and left.
One day, before leaving home for treatment, Noam played at home while using crutches, raising the fear that he might have suffered a fracture that could case cancer cells to spread to other organs. He was put into a cast just in case. After the family frantically coped with delays, it became clear that he had not broken any bones.
He was prescribed a long chemotherapy course of Doxorubicin and Cisplatin, to be followed by Methotrexate to kill as many cancers as possible. But he suddenly developed a fever, and his white-cell count dropped dangerously. The first chemical caused painful sores in his mouth that made eating and drinking difficult.
The second caused constant vomiting, bringing down the weight of the former roly-poly child, and he developed a rash all over his body.
Benita learned that Noam was mistakenly given an overdose of the chemicals, and only one doctor in the department admitted an error was made, he reports.
Noam also developed an allergic reaction to a faulty, virus-infected blood infusion he was given. It took almost an hour for Hadassah doctors to give him steroids when, said the father, it would have taken a paramedic in an ambulance mere minutes. Although the staff insisted that the infusion continue, Benita turned off the spigot and refused to allow the transfusion to continue, and eventually proving there was a problem with the blood. Finally, the doctors replaced the infusion bag with a different one.
THE SUBJECT of medical cannabis – much discussed in Israel in the past year – is given a whole chapter in Benita’s book. He writes that see- ing Noam in much pain from mouth sores and losing weigh from lack of appetite, he contacted via Facebook a family that wrote about having given cannabis to their daughter, who had cancer but has been “cured.” Kobi, the father, so wanted to help the Benitas that he drove to the other side of town to help him.
Kobi pulled a small vial of cannabis in oil from his pocket and gave it to Benita. Benita put just four drops of it on a dish of food and served it to Noam – after weeks in which Noam had hardly eaten. He soon began to wolf down the food. “We couldn’t believe our eyes,” his father writes.
Although Hadassah’s Weintraub said he didn’t recommend patient use of cannabis, he named two other doctors who finally helped the Benitas to get a Health Ministry license for Noam to use it, but only when he suffered from pain and nausea.
Damage to the bone in his right leg was worse than thought, but after an MRI scan it was decided at Dana that an implant to hold the diseased bone together was unsuitable because additional hard tissue had to be removed; it would take another month to get a different- sized one. As preparation, back at Hadassah Noam was given a new drug, Ifosfamide, for five days while being hospitalized. He did not react well; in intensive care, he babbled nonsense, was paralyzed from the neck down, his pupils jumped around and any time he was touched lightly, he screamed. The doctors insisted that the drug did not cause such side effects, but Benita found that it does – rarely.
The doctors decided to give the boy an antidote called methylene blue that was supposed to be free of side effects – but Noam’s body actually turned blue, like a Smurf. There he lay, all blue, with a too-fast pulse and high blood pressure, paralyzed and weighing half of the 45 kilos that he had carried four months before. Scouring the Internet for medical information, the Benitas insisted that the blue drug be halted and suggested that he be given another drug. Finally, the doctors agreed, and Noam’s condition gradually began to improve.
“This was one of the most difficult experience we went through as parents,” Moshe stressed.
Benita cites health fund doctor Ya’acov Armon, Noam’s personal physician in Efrat, as showing great concern and empathy and always giving good advice.
Their faith in God, as religious Jews, was always a support for helping them struggle on, the author writes.
Back at Dana, Noam was scheduled to undergo surgery to insert the bone implant. In the recovery room, he was given an air mattress to make him more comfortable.
“I still remember that in Hadassah’s intensive care unit, we were told: ‘If you want one, bring it,’” Moshe wrote. Compared to the “unappetizing food” that he was served at Hadassah, the meals at Dana were much better, he continued. He also cites the goodness of a teenager named Taleb who cheered Noam up by bringing a tablet PC and playing with him for hours.
Benita concludes the book with advice to parents of hospitalized children: “Be involved as much as possible. There is no reason to be ashamed about asking questions about drugs they are being given, what the staff are doing, what side effects there may be or what will happen next. There are almost always alternative drugs, and the right one must be given. Of course the doctor must choose, but he must give parents the information [regarding] why he chose one drug over another. If you don’t ask, you won’t know.”
The Benitas finally got the good news that Noam’s body was cancer-free. He was taken by Zichron Menachem on a free trip with other cancer survivors to Holland to bolster his spirit. His parents are still fighting their fears that the tumor, God forbid, might one day return.
If only an independent, knowledgeable, stubborn and devoted case manager had been assigned by their health fund at no charge to him to help the family on Noam’s journey.