“There are two diagnoses floating in my mind,” I said, “both equally sinister.” “Kidney and adrenal?” Dr Karuga pre-empted me, as if trying to show off his clinical acumen. Illustration I John Nyaga
Curled up in bed in the children’s cancer ward, Philomena looked scared. It was the first time that I saw an expression of fear on the face of this intrepid six-year-old girl.
“I am afraid,” she murmured when, on my ward round, I asked her how she felt.
Philomena’s mother, who was sitting on the bed with her, cradled her daughter’s head, looking hideously large on a body which had incongruously shrunk. It was a sight that brought tears to the eyes of the young medical students and probationary nurses who were accompanying me on the teaching ward round.
They were too callow to have become accustomed to the pain of being a doctor or a nurse. They were still wearing delicate sensitive skin which would sadly turn thick by repeated exposure to such scenes, as they progressed with their studies.
Ravaged by chemotherapy
It was a situation which was as poignant as it was transitory for, three days later, Philomena’s body, ravaged by chemotherapy, scarred by multiple surgeries and riddled with malignant tumours, could not take it any more. It slipped away under our very eyes, with her parents and two siblings holding her with their helpless hands and watching her with tearful eyes.
A year earlier, Philomena was referred to me, complaining of a lump in her belly, by my paediatrician colleague. It had proved a diagnostic enigma and Dr Karuga, the child specialist, thought that a senior eye might solve the puzzle.
“She just arrived in my clinic,” Dr Karuga said when he rang me, “feeling listless and looking pale. According to the parents, she had recently lost her appetite. Normally she likes food and the mother and father, who are very caring, told me that they had to stop her eating excessively.”
As I was listening with increasing clinical interest, Dr Karuga introduced a new element.
“It was while I was doing a general examination and foraging for a diagnosis that I put a hand on her abdomen and hit this strange lump in her abdomen. With that finding, I realised that she was a surgical problem and so I had better call a senior experienced surgeon in joint consultation with me.”
“Does it hurt?” I asked Philomena when I went to see her in the children’s ward where Dr Karuga had admitted her.
“A little,” replied the girl, watching me with some natural suspicion.
After giving my young patient a full examination, I walked out to Dr Karuga’s office in the hospital. “There are two diagnoses floating in my mind,” I said, “both equally sinister”.
“Kidney and adrenal?” Dr Karuga pre-empted me, as if trying to show off his clinical acumen.
“Yes,” I said. “Nephrolastoma or neuroblastoma.” I clothed his two tentative possibilities in high-fluting technical terms.
By the time I saw Philomena’s parents, following various investigations including CT scan, MRI and a full skeletal survey, the final diagnosis had been arrived at.
Malignant lumps
“I am afraid I haven’t got very good news for you,” I told them when they came to see me in my office. “Malignant lumps in the belly in children arise from one of two organs – kidney or adrenal,” I said feeling quite uneasy myself.
“Kidney we understand,” the father interrupted me. “But what is adrenal?”
“It is a gland which sits on top of the kidney,” I explained. “It has two different sections, each one carrying out a distinct vital function in the body. One part mostly comprises nerves and neuroblastoma, as the name implies, arises from it. Unfortunately Philomena is suffering from that horrible tumour.”
After a few relevant and intelligent questions pertaining to the diagnosis, the parents turned to the subject of treatment.
“The first step is surgical,” I said. “I go in and try to remove as much as possible of the tumour. Even if I can remove it all, which is unlikely, surgery will have to be followed by radiotherapy and chemotherapy.”
“And what does the future hold for our daughter?” Asked the mother.
“I am sorry. It’s not very bright.” I did not see the point of hiding the truth. “Mind you,” I softened the blow. “It is an extremely rare tumour and, for some reason, it attracts a lot of research. Who knows what new treatment might be lurking round the corner? Medical research is running at a very fast pace and I read new treatment in the journals, while a patient is under my care receiving the old time honoured treatment. I then change my tack, based on the most up to date research, and the prognosis can change from an utterly dismal to a pleasantly promising one.”
The post-script, as it were, turned out to be prophetic. My surgery, as I feared, was incomplete.
“The tumour was very extensive,” I said to Dr Karuga and Philomena’s parents. “It was stuck to the aorta and vena cava and, though I have removed most of it, swathes of the tumour attached to these big blood vessels had to be left behind.”
Dr Karuga and I decided to move Philomena to the children’s cancer ward so that she could easily receive her radiotherapy and chemotherapy. As this treatment proceeded, it was painful for everyone to see the little girl lose her curly hair, her mouth covered in painful sores, often suffering from bouts of vomiting and continuously losing weight.
And, to add insult to injury, there was no let-up in the relentless progress of her terrible disease. One morning, Dr Karuga and I sat over a cup of coffee in the doctor’s lounge to discuss Philomena’s sad case. We both had read in journals about immuno-therapy research being carried out in the USA and India to treat these dismal children’s cancers.
Attack the tumour
The research is directed towards stimulating the child’s own immune system to attack the tumour cells from within and destroy them. In medical jargon, it is known as monoclonal antibody therapy. The research had shown that this new therapy had greatly improved survival rates. We discussed the matter with Philomena’s parents.
“The cost of this treatment in USA is prohibitive but not so high in India,” Dr Karuga and I told them.
“It is still beyond our means,” the parents said when we gave them a rough estimate.
“We will do a harambee,” the mother said.
“And set up a “Save children from childhood cancer fund,” the father enthused.
Invitation cards for the harambee went to all friends and relatives and notices appeared in some newspapers with the account number for people to send money. Ironically, Philomena was going downhill fast while funds were coming in slowly.
And then something strange happened. “You won’t believe it,” Dr Karuga said to me one morning as we bumped into each other in the hospital corridor. “I saw another case of neuroblastoma yesterday in my clinic and have admitted the child. I have enjoyed working with you on Philomena’s case. So why not do the same on three-year-old Apollo?”
We did, came across the same problems and took the same line of action. In the meantime, despite writing desperate letters to potential donors, not enough money could be raised to send Philomena to India.
In the final days of her short and sad life, she could barely walk and her legs were like jelly. She became an old caricature of herself. That is when she said to me “I am afraid”.
I knew that she was dying but, at that moment, she said something to her mother in my hearing. “I hope no child suffers like me”. It was a remark which was etched in my mind.
When the mother repeated to Dr Karuga and me what her daughter had told her before she succumbed to her terrible disease, we both personally approached our rich friends and they topped the “Save children from childhood cancer fund”.
The first beneficiary of this fund was Apollo. He was quickly dispatched to Hyderabad in India and is receiving treatment there.
Heart-breaking episode
Though the initial reports are encouraging, I have no definite – sad or happy – ending to this story which I know my readers like. I have, however, something better to close this heart-breaking episode. It is what Philomena’s parents said when we asked them if we could use “Save children from childhood cancer fund”, initially started to help Philomena, to send Apollo to India for treatment.
“Though we ran out of time with Philomena, her death wish to see no other child suffer will be fulfilled if Apollo goes to Hyderabad and returns home fully recovered,” the mother said.
The father reminded us of the title of the appeal and the account.
“It was to save children from childhood cancers,” he said. “It did not specify a particular child for, after all, we are all children of God. Apollo is a part of the whole and, if the fund helps one child, it has helped them all.”
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