George I. Jallo (editor) - Brainstem Tumors: Diagnosis and Management

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On March 25, 2015, Amador, my second 12-year-old son returned from his karate lessons and began to complain that his right arm and right leg hurt. He said that he was having difficulty moving his right limbs. We assumed it was an effect of his work in karate. Two days later, Amador could no longer hold a plate with his right hand. I also noticed that he spoke fast and skipped some words. The next day, Amador walked making the leg to the side, as if it was a neuropathy. He started to eat and write with the left hand, since it was impossible to do it with his right hand. By Sunday, March 29, Amador no longer moved his right arm in its entirety. We took him immediately to the Childrens Hospital, and they informed us that it was a neurological issue, and we had to perform a magnetic resonance imaging (MRI).

That evening, he underwent MRI, and it turned out that he had a tumor in the brainstem. It was not possible to get a biopsy because of the sensitivity of the very delicate location in the medulla. As parents, this was the most painful news that we had ever received in our entire lives. We understood what a brain tumor meant, but we never guessed how delicate and perhaps fatal a brainstem glioma could be.

In our desperation, we looked for the best possible solution locally as well as internationally. We were terrified to hear the words brain surgery, so we tried to avoid any possibility of an operation.

In the next few days, Amador was better after receiving high-dose steroids; he began to talk in a habitual way. He also recovered some movements. On April 6, Amador underwent gamma knife radiosurgery. It seemed to be successful, as his neurological function continued to improve. He was transferred to a rehabilitation center, where he received intense physiotherapy. He had some improvement, but 6 weeks later, his neurological function began to deteriorate. On Sunday, May 17, Amador had irregular respiratory efforts, and he required emergent admission to the intensive care unit (ICU).

The doctors informed us that he had a severe pneumonia. The following day, he had a respiratory arrest, which required resuscitation. The tumor had not grown but developed cystic components instead, which further compressed the important neural structures. He entered the operating room, and, because part of the inflated cyst was outside of the brainstem, they were able to take a biopsy sample. After 7 days of ICU care, Amador started to recover, and he was extubated. He was a very intelligent child. He knew about his condition, and his worst fear was not being able to return to home. He suffered from stress when he was separated from his parents, since medical protocols in Mexico do not allow parents to stay close to their children in the pediatric ICU. Three days passed, and, again, he suffered from another respiratory arrest. We decided with the doctors that the best chance was to perform a tracheostomy. There was no time to tell Amador, so he was very angry and upset when he woke up without being able to speak or breath.

A few days passed, and the wound began to become infected. In turn, the biopsy indicated that it was a Grade 2 tumor, and, in other sections, it was a Grade 1 astrocytoma. However, there was a study that marked it as Grade 3. The oncology team started chemotherapy, but he developed several complications. Obviously, chemotherapy lowered his immune defenses, and he developed a wound infection. Amador had two ventricular drains to cleanse the infection in the cerebrospinal fluid (CSF). After 2 months of being in the ICU, the infection was treated, but the tumor continued to grow. The strangest thing about brainstem gliomas is that Amador was conscious in every minute and every second of this process. We read books, sang, and talked to him, and he understood everything; Amador never lost consciousness until the last minute.

We were transferred to another specialized unit where the team stabilized him in preparation for another surgery. Amador had already turned 13 years old. His condition was very complicated, but we all had that illusion. On August 13, I had to accompany him to the operating room, and he entered surgery at 10 am. At 1:00 pm, the surgeons came out to let us know that the surgery had been successful; the tumor was still a Grade 1 and was not malignant. Unfortunately, the infection was still present in the CSF and in the cyst fluid. The organism was a resistant bacterium.