The Sunday News
Robin Muchetu, Senior Reporter
MS Juliana Mahuni moves out of the kitchen with a resigned step and looks into the distant mountains with a blank face.
She is an emotionally shattered woman and her pain is no longer hidden in her heart, it has become axiomatic, one can easily touch it. In fact, there is an aura of it all over her face. She led her guests including a Sunday News crew into a dim room where her son — an eight-year-old boy — Freeman Khanye is no longer free.
He was diagnosed with cancer — Xeroderma Pigmentosa (XP) and most of the time will be lying covered with a mosquito net to keep away flies and other small insects from landing on his face.
The young boy lets out a small, soft but piercing and agonising cry as he breathes under the cover of bedsheets.
“Vala mama, kubuhlungu (close the blankets, it is painful),” was all he could say and continued to cry, his voice muffled by the blankets that his mother used to cover him once more.
His face has been colonised by a cauliflower- like growth that has destroyed his right eye and is creeping towards the left one. He has lost sight in both eyes.
Another lumpy growth can be seen shooting above the left eye while his nose has been swallowed by the growth. The right side of his neck has an open wound that oozes pus, together with the other growths on his face that have also burst open.
His small limbs have wasted away and he is always curled up in a foetal position on his bed. He has developed pressure sores and his feet and genitals have swelled up such that he no longer has control of any bowel movements forcing his mother to rely on diapers to keep him clean and dry.
What is heartbreaking about Freeman and his condition is that he has not received much medical assistance since he was discharged from Parirenyatwa Group of Hospitals in Harare where he had a few sessions of chemotherapy.
He was discharged into the hands of his mother who is responsible for cleaning up his wounds daily with whatever she can lay her hands on.
“I clean his wound daily by myself. When I have cotton wool, I use that, with an antiseptic solution. The clinic is far from here and there is no transport that I can use to take him there.
“Look at his condition, who would want to carry him in their car to the clinic daily. I also cannot afford it,” said Ms Mahuni, fighting back swelling tears.
She has conditioned her mind to offer palliative care, single-handedly and feels there is no glimmer of survival left in her son. Community health workers who are supposed to offer home-based care assistance have not been so helpful. They have been bringing an antiseptic solution for her, if they find it from the local clinic. No-one comes and assist in cleaning Freeman.
“I gave birth to Freeman in 2015 and there was no problem. He only changed at 11 months when his face suddenly turned black and I took him to the clinic. His eyes seemed to have been painful as he would rub them. I was referred to the Richard Morris Eye Unit in Bulawayo and the doctors said they could not find any problem. He then started getting skin tags (insumpa) on his face. These then developed further and he developed a growth on his head. I took him to Mpilo Central Hospital where they performed a biopsy and doctors said it was cancer around February 2021. A little later another growth developed and they did another surgery in September. The third growth appeared on his nose and the hospital said they could not keep cutting him with no solution in sight,” she narrated.
She was referred to Parirenyatwa Hospital in Harare for further assessment in January this year where doctors also said they could not operate on him.
“I asked why I had gone all the way to Harare to be told they could not operate on him. I was told it would recur if they operated and I had a breakdown until they agreed to do the operation. But the growths started to grow bigger and faster,” she added.
Freeman now has an opening on his neck and cheek where the growth is bursting from, but is still able to eat soft foods. After the last operation Ms Mahuni said she was called by hospital officials who said the boy was in a terrible situation.
“I was called to a private room at the Harare hospital where they told me that Freeman’s situation was dire and they could not operate on him further. He was supposed to return to hospital on 11 July 2022 but I was unable to get transport from Matobo to Harare as he cannot use public transport to get there. He also stopped walking so it was just a challenge. The last session he had in Harare was a challenge as doctors could not find any veins to administer the medication and they had to stop as they had injected all possible places to no avail,” she added.
However, when asked if she would like to go back to Harare for review, Ms Mahuni took a long pause and sighed.
“Ahhh, he has swollen feet, he can no longer walk and even if we go back to Harare what will they do? Look at how this flesh has covered his face? They will not operate on him, we will go and just sit there and get no help, maybe get the wounds cleaned only. He cannot see totally now, so I am skeptical about everything,” she said with her voice breaking.
Cancer
In addition, Freeman has never been in school. Ms Mahuni’s case reads like a script in a tragic movie scene. She was blessed with five children but the third born passed away from a similar cancer in 2012. The girl was buried right in front of the homestead and the small grave at the gate is a constant reminder of the trauma she went through when she raised the child. She is scared history may repeat itself.
“I had five children, but the third born also had a cancer that affected her and she died when she was eight years old. She also changed and turned black two weeks after birth. She, however, had growths that grew on all her finger tips and toes in a similar fashion to what Freeman has on his face. He had several operations at Mpilo to cut off those growths but to no avail until her death. I was later screened by doctors to see if there was a problem as I was giving birth to children with similar conditions but they found nothing,” she said.
She said her husband Zenzo Khanye who works at a nearby homestead has tried to seek assistance from traditional healers and churches to no avail. Ms Mahuni said she does not know what will become of her son.
“I do not think there will be change, but look, we cannot plan for God, he may heal him and he may survive,” she said.
Reverend Bekithemba Phiri, the superintendent of the Methodist Church in Zimbabwe Hillside Circuit said he first saw Freeman in 2021 during an outreach.
“I saw Freeman when I was doing pastoral visitations in the area in November. He was at his grandmother’s homestead but his situation was much better than it is now. Last week I came with our Bishop and there was a request for prayers for the boy and that is when we saw that the condition had worsened since the last time. Through our Christian Social Responsibility department in the church, the co-ordinator Mrs Irene Manhovo assisted by Mrs Phoebe Makuvaza rushed and mobilized some resources for him and he got antibiotics, painkillers, pampers, betadine, cotton wool and some food staffs.
“The issue of morphine tablets that was communicated to Island Hospice needs more attention and they have indicated that Freeman has to travel to Bulawayo to be seen by doctors who can then make the assessment and facilitate that they get morphine in order for him to relieve the pain. The challenge, however, remains that he needs to be transported in a suitable vehicle in order to move from one point to the other. We need to ensure he is assisted as soon as possible because the situation is now beyond the family.”
Ms Mahuni said the Church brought her potatoes, pampers, drugs, cotton wool, antiseptic solution, gloves and bedsheets and said these have assisted.
“They also told me that Freeman needs stronger painkillers like morphine to assist with pain and to enable him to sleep as he cries the whole night and day from the pain he will be feeling. He only keeps quiet when he falls asleep for brief periods. However, the relief from the regular pain killers is temporary,” she lamented.
