Guide Tortured Journey

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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. 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.

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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. 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.

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. 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: 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. 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.

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