Part of her skull was stored in the abdomen

On top of the 2020 wish list for Josephine Lumumba and her family is that it will be the year that she gets back great health and independence. She hopes that she will undergo all the surgeries that could not be done. Her husband Patrice recounts. By Agnes Aineah

My wife started complaining of pain in her eyes in June 2013. She was managing our shop while I worked at a construction company in the city. For months, we ignored the pain until she started having blurred vision. She also complained of a nagging headache that remained unabated by painkillers.

We first visited a top hospital in Kitui where doctors ran some tests and concluded that my wife only needed glasses to manage her poor vision. But the pain intensified even with the glasses and her vision only got worse.

In 2016, we visited a hospital in Nairobi where doctors hinted that there was some form of pressure on her eyes. An MRI revealed that my wife had a brain tumours. The medics explained that the tumour was sitting on her optical nerves and it was the cause of the pain and vision problems. She needed urgent surgery to remove the tumour.

In March this year, we raised funds, paid the initial Sh450,000 and had my wife wheeled into the operating theatre at a top hospital in Nairobi. We were told that she would be in a comma for 48 hours after the surgery, but this wasn’t the case. Instead, doctors explained that they had experienced a difficulty getting to the tumour after they opened my wife’s head. That when they cut her frontal bone to get to the tumour, her brains started surging outwards with a lot of pressure. They also explained that she was bleeding profusely from where the doctors made the incisions in readiness for the operation and they only managed to chop a little bit of the tumour for lab tests and sealed the brain back in her skull by pulling the skin on her forehead over it. They then kept the frontal bone in her abdomen where they said it would stay safe until another surgery for removing the tumour. They said keeping the frontal bone in a freezer would potentially kill the cells in it. To date, my wife has the bone in her abdomen.

After the unsuccessful surgery, my wife stayed in comma for five months. She was still in the ICU when doctors performed another surgery to clean the surgery wound from the initial surgery. It was also during this time that I lost my job since I had been absent for many days tending to her.

In July, she regained some degree of consciousness and moved to the general ward where they continued managing her condition. She started breathing on her own and moving her limbs. Within a short time, she could sit up with some support. By then, the hospital bill had accumulated to Sh4.5 million which was a nightmare to us. We were detained at the hospital for a whole month, as we scrambled to pay the fee. I had to part with my land title for us to be released.

Unable to pay our rent in Nairobi, we moved upcountry where I thought my wife could also enjoy a quite environment for a speedy recovery. We also enlisted for services of a physiotherapist who charged us Sh800 a day. We only did the physiotherapy for a month because we couldn’t afford it anymore. Fortunately, I had keenly observed the regimen and knew what had to be done. I regularly try to straighten her limbs, turn her head around and ensure that I walk her around.

The doctors who performed the first surgery linked us up with doctors in India who they said can operate on my wife. The doctors said that the surgery would cost us Sh5.7 million. Now the biggest challenge for us is raising the money for this surgery.  While I feel totally helpless, I hold hope that with the help of well-wishers, we will get the help we need and get my wife back on her feet.  

Fast facts on brain tumour

A brain tumour is a collection of abnormal cells in the brain. Brain tumors can be cancerous or noncancerous. When tumors grow, they can cause an increase in pressure inside the skull and may result in brain damage or death.

Risk factors include the following

·         Can be inherited

·         Risk increases with age

·         Being exposed to certain chemicals,

·     Exposure to radiation for instance through high-radiation cancer therapies

Symptoms of brain tumors

·         Headaches that are worse in the morning when waking up, occur while sleeping or those that are made worse by coughing, sneezing or exercise

·         Vomiting

·         Eye problems, such as drooping eyelids and unequal pupils, blurred vision or double vision

·         Confusion and clumsiness

·         Weakness of a limb or part of the face

·      A change in mental functioning and memory loss

·         Difficulty writing or reading

·         Changes in the ability to hear, taste, or smell

·         Decreased alertness, which may include drowsiness and loss of consciousness

·         Difficulty swallowing

·         Uncontrollable movements and muscle weakness in the face, arm, or leg

·         Hand tremors

·         Loss of bladder or bowel control

·         Numbness or tingling on one side of the body

·         Changes in mood, personality, emotions, and behavior

Diagnosis

Tests in include

·         CT scan of the head

·         MRI of the head

·         Skull X-rays

·         Biopsy

Treatment of brain tumors

It depends on the type of tumour, the size of the tumour and the location of the tumour. Options include

·         Neurosurgery

·         A combination of surgery with radiation therapy and chemotherapy

·         Others include physical therapy, occupational therapy and speech therapy

To help Josephine Lumumba, her husband, Patrice Lumumba can be contacted via 0729 936600.