Losing yourself in pain
“He will feel a very intense pain,” said Dr. M. “We are going to try to keep it under control with morphine, yet we cannot risk an overdose, which might lead to tachycardia or difficulty in breathing. Please brace yourselves for it”.
We have been bracing ourselves anyway. Whatever that means under the circumstances. We had rejected becoming like a torturing SS officer for the third time, and decided to play chess with Death like the Knight in Ingmar Bergman’s The Seventh Seal. We had chosen torture over death, while cursing fate that obliged us to make a decision on how our five-year-old child would live or die.
In any case, this was the only choice we had to make. We did not have any other alternatives anymore. Chemotherapy was not working. The new generation ALK medicines that had miraculous effects initially were able to withstand the ceaselessly self-renewing cancer only for four months. There were other studies and trials too, but most of them were still in the start-up phase and he did not have much time.
Under these dire circumstances, our only chance was this personalised immunotherapy, for which we raised money two years ago, but still could not afford. Now this treatment was available at some centres in Europe. Since we had been through the nightmare of immunotherapy, we were more or less aware of the tough fight awaiting us. Still, the newly developed, more “humanised” immunotherapies were more effective – and much more painful. After all, an alien antibody was going to be injected into his body; this antibody was going to stick to the cells, including the cancerous ones; and it would enable the immune system to detect “rogue cells” as if they were bacteria or a virus and destroy them. At least, that was the aim. We were going to see whether it works in time.
The problem is, neuroblastoma was a cancer of the peripheral nervous system and the cells that the antibody was going to stick to were nerve cells. The very cells that make us feel pain. Needless to say, his nervous system would react to the antibody and that reaction would take the form of excruciating physical pain. No one, not even the doctors, knew where it would hit and how intense it would be. Sometimes he will be feeling like all his body is electrocuted; at other times, particular parts of his body, his hands, his fingertips and toes, his neck, his knees will be hurting. From being an SS officer, we had been promoted to being Dr. (!) Mengele, the leading torturer of Auschwitz!
“Please do not get us wrong,” said Dr. M. “I and our nurses administer this to several kids on a daily basis. We will be talking to each other or make jokes, to be able to normalise it somehow. Please do not think that we do not take our job seriously or we underestimate his pain. It is the only way to keep our mental sanity.”
We were wondering whether it would be worse than we thought. Dr. J, the eminent Catalan physicist responsible for the trial, explained to us the process with all details. We had read everything we could find about the treatment. Yes, during the injection, for about half an hour, he will be experiencing pain, but this treatment was developed for the “worst of the worst” cases and it considerably improved the chances of children suffering from recurrent-refractory neuroblastoma. At the very least – assuming that it worked – it would prolong his life, thereby rekindling our hope considering the fast development of new forms of treatments.
And yet, we were already daunted. We were told to be at the hospital at 7.30 in the morning the day the treatment started. We could not get a wink of sleep despite sleeping pills. He was blissfully unaware of what was to come. In fact, he was still sleeping when we carried him to a taxi. Slowly, he woke up. He was still unaware of what was going on around himself. “iPad” he mumbled, and started playing Lego Star Wars.
We arrived at the hospital. They placed us in cubicle number 14. After the chemotherapy is over, they started the infusion of various painkillers and antihistaminic medicines in order to prevent possible allergic reactions (we had already started using painkillers two days before). In the meantime, the nurses closed the entrance of the cubicle with a curtain and brought a small table next to his bed, preparing syringes. Suddenly, the table was covered with syringes of different types and sizes. “How is it possible for such a small table to take so many syringes?” I thought.
He continued playing with his iPad. His mother and I were exchanging furtive glances with each other, but we didn’t talk. (What were we going to talk about?) Had Dr. M. not warned us, we would not have noticed that the infusion of the antibody had already begun. “From the 12th minute onwards, he will feel the pain,” said Dr. M. whispering. “Between the 15th and the 18th minutes, the pain will peak, and then it will slowly die down,” he continued. I started the stopwatch on my phone.
Suddenly he quit playing; the expression on his face changed. Dr. M. wanted us to ask: “Do you feel any pain? Where?” We did: “I feel sick at my stomach,” he replied. Dr. M. immediately turned to the nurse and said something in Spanish. The nurse grabbed one of the syringes and injected it.
All this lasted barely a minute, but during that one minute, he had already taken the foetal position, cuddled up to his mother, moaning. He writhed in pain, involuntarily moving his hands and arms searching for some comfort. He was wincing, involuntarily pushing me away with his feet, but then reaching out to my beard in order to make sure I was still there.
The syringes were used one after another, and the top of the table was empty. While the process of flushing began, the morphine kicked in, and he fell into an uneasy sleep interrupted with sobbing. He passed out. Or rather, he “lost himself in pain”.
His last words before passing out were “Why have they invented immunotherapy?” Dr. M. replied that it is for curing him and other children. He then turned to him and asked in Swedish “Why don’t you invent another medicine?” While translating the question to English, I wondered: Had Mengele ever had to translate anything?
The doctor and the nurses warmly said goodbye after making sure that everything was under control. Dr. M. caressed his cheek.
His mother held onto him and closed her eyes. She is the strongest woman I have ever met.
I was not that strong.