Teenager in agony due to rare cancer

Catherine Kyomugisha looks extremely frail lying on the lower decker of a bed inside the Akiba House at Bless a Child Foundation (BCF). Her mother, Rovinse Turyomuruwe looks on as her daughter speaks with the Home administrator.
BCF is an organisation that offers psychosocial support services to children living with cancer. It has two Homes; in Kampala and Gulu.
What strikes you about Kyomugisha are her large eyes – made more prominent by the thinness of her face – and her beautifully black, curly, hair. Next, you will notice that her left buttock is awfully swollen and hard, like a football.

The bedsheet covering half of her body almost obscures a urinary catheter running to a plastic collection bag on the floor.
The swelling is a chordoma, a malignant cancerous tumour growing at the base of her spine. Chordomas are part of a family of cancers that affect the bones, cartilage, and muscles.
It is two hours since morphine was last administered to the 16-year-old girl and there is a lull in the pain. Next to her, on the bed, is bottle of juice, a mobile phone and The Great Hope, a religious book by Ellen G. White.

The morphine is administered in 10ml doses on a 4-hourly basis; however, there is only one dose left. According to Rachael Nsimbe Navuga, the Home administrator, Mulago hospital has run out of morphine.
“We were given only 20ml today (Wednesday) and we have already used 10ml. The remaining dose will have to be rationed in two doses of 5ml over the next four hours. After 8pm, she will start screaming in pain. But I am trying to secure some morphine from Hospice Uganda, though I am not sure if I will get any.”

How it started
In 2014, Kyomugisha, at 14, was studying at Bishop Robert Rwamagaya Voc. SS in Nyakitubire, Ruhinda, in Rukungiri District.
“One morning, in April, I woke up feeling pain in my right leg,” she says feebly, continuing, “During the course of three weeks a teacher gave me painkillers but they did not work. Then, my back started hurting and I could not bend.”
Shortly afterwards, a small, painless, swelling appeared below her left buttock. For the next two months, she did not receive any form of treatment. Kyomugisha’s mother was living in Mubende District, mining gold.

“While I was away, my four children lived alone,” says the widowed Turyomuruwe, adding that when she heard her daughter was sick, she returned in August 2014 and took her to Nyakibale hospital in Rukungiri Town.
“The doctors said there was nothing wrong with her, so I took her to a traditional healer.”
The healer diagnosed the disease as witchcraft administered by Kyomugisha’s schoolmates. His treatments, however, were ineffective as the swelling grew and the pain in the leg worsened.
In September 2014, Turyomuruwe brought her daughter to a Kampala church, though the pastor’s prayers were also in vain. One church member advised her to try Mulago hospital.
“The doctors wanted to cut a piece off the swelling (biopsy) and they asked for Shs 260,000, of which, Shs 200,000 was for a CT scan. I only had Shs 20,000 so the nurse told us to return home.”
A biopsy is a sample of tissue taken off the body for close examination. A CT scan combines many X-ray images to define abnormal structures in the body.

Turning to the spiritual
Turyomuruwe sent her daughter to her sister in Fort Portal District and returned to the goldmines.
Kyomugisha says her aunt prayed over her. “In December, 2014, after prayers, my right leg became paralysed. I could not walk. Sometimes, it felt very hot and other times, it felt cold.”
She developed severe constipation and could not urinate. Her aunt began visiting traditional healers.

“They gave her herbs and instructed her to make cuts on the swelling and smear the herbs in the wounds. Only the herbal medicine for the bladder worked because I started urinating, but I lost control of my bladder.”
Her mother also fell ill with allergies that caused her body to swell and was hospitalised at Mityana hospital.

“I stopped working and returned to Rukungiri to sell my house and land,” says Turyomuruwe, adding, “I came to Kampala with my other children and we rented a room in Nansana.”
In April 2015, she brought her daughter to Kampala to another pastor. Kyomugisha had spent four months on her stomach, so a car had to be hired to transport her.
“I was shocked at my daughter’s condition, but when my money ran out, we spent five months without treatment, only using painkillers for the pain, which at the time, was manageable.”

Getting proper diagnosis
In November, Turyomuruwe finally received financial help from her brother. When he saw the size of the tumour, he drove them to CoRSU Rehabilitation hospital.
“My uncle told a nurse that I needed an operation but she told us to go to Kisubi hospital because they (CoRSU) dealt with bone conditions only,” says the frail girl, adding, “In Kisubi I was taken to the scan. I had spent 11 months lying on my stomach but when they turned me, I thought I would die from the pain.”
The doctors thought her nerves were the problem, but the results were inconclusive. They instead referred her to Nsambya hospital for a CT scan.

“The CT scan showed that a blood vessel had twisted around one of the spinal bones. They said it was a tumour full of blood. Since a bone was involved, in December 2015 I was referred to CoRSU.”
According to the mother, at CoRSU, they were told that since it was Christmas time, the hospital was slowing down its operations. They referred them to Mulago hospital for a biopsy and told them to return in January with the results.

At Mulago, chordoma was diagnosed after a biopsy but the doctor told Turyomuruwe that the disease was too far gone. “He said Mulago did not have the capacity to treat it but he would recommend us to other doctors. We have never seen him since.”
Kyomugisha spent a month in the hospital, receiving some palliative care from Hospice Uganda.
Towards the end of January 2016, Brian Walusimbi, executive director, Bless a Child Foundation, invited them to live at Akiba House.

At the recovery centre
Kyomugisha is currently staying at Akiba House, a transitional home which offers accommodation, meals, transport, end of life care, play therapy, counselling, and subsidised medical support for sick children. Children with cancer stay at the home as they receive chemotherapy cycles. There is also a classroom where children can keep up with their studies.
“Getting her inside this room was difficult because she is tall and can only liek on her stomach,” says Rachel Navuga, staff of Bless a Child Foundation, adding, “We had to hire an ambulance.”

Kyomugisha is supposed to return to CoRSU on January 29, but lacks the funds needed.
“I do not feel pain in the tumour unless someone presses it. Sometimes it feels heavy. I have shooting pains in my right leg, at the top of the thigh and the foot. Although it is paralysed, it still has feeling in some places. When the pain comes, the morphine cannot stop it.”
What is strange is that the pain is in the paralysed right leg, yet the tumour is on the left buttock.

Navuga says the doctors at Mulago informed BCF that they could not operate on the tumour because they fear the bone in the tumour will be left sticking out.
“She cannot get chemotherapy because she is too weak, and yet, they cannot operate until she has had chemotherapy.”
Kyomugisha’s menstrual periods disappeared in November 2014, shortly before she became bedridden. Now, she is given drugs to soften her stool to make her bowel movements easier.

“We are just managing the pain,” Navuga says, adding that they are looking to upgrade to a pain medication stronger than morphine.
Kyomugisha has hopes of recovering. “I will be healed. Something tells me God is going to heal me. He is able to do that which has defeated man.”
She passes the long hours of the day reading The Great Hope, “But I also wish I had a Bible to read,” she says quietly.

Explaining the characteristics and risk factors of chordoma

According to Dr Edward Katongole Mbidde, a practicing oncologist, a chordoma is an abnormal swelling in the spinal cord.
“Depending on the symptoms that any swelling presents, you can tell if it is cancerous or not. For instance if someone has had a swelling for 20 years, it cannot be cancerous. But if the swelling is growing within a short period of time, then its characteristics are cancerous. With chordoma, the swelling compresses the nerves in the spinal cord, causing severe pain,” says Dr Mbidde.

Risks and symptoms
Chordoma can occur in any age group but is commonly found in people over 40 years. If the tumour is at the base of the skull, it will cause headaches, neck pain, and blurred vision. At the coccyx (tail bone), it will cause persistent backache, numbness in the arms and legs and problems with the bladder and bowels.
Because it is rare, with symptoms resembling those of other diseases, diagnosis is made late, after a CT scan.

“We are not exactly sure what causes it,” Dr Mbidde says adding, “It grows slowly and the only management is to remove it through surgery. If it reoccurs after surgery, then radiation therapy can be used.”
However, since the tumour grows near the brain or spinal code, it is difficult to remove without damaging these vital structures.