Parenting is hard-work. But nothing prepares one for the profound labour of love needed when you get a child with special needs. ESTHER AKELLO spoke to Julius Mwaria on what it takes to raise a child battling cancer.
In September 2016, Julius Mwaria and his wife noticed their daughter Marline Waithera wasn’t feeding well and her personality had become lack lustre.
She complained of a stomachache and had traces of blood in her urine. They took her to a nearby dispensary where she was given some medication.
One day in October, as her mother was bathing her, she noticed Marline’s stomach was swollen and was also hard to the touch.
Julius took Marline to a hospital in Nyandarua where they were unable to diagnose the problem. This would be the beginning of an agonising journey as he moved from hospital to hospital without getting much help.
It was at Bliss Healthcare in Nakuru that he finally got the much-awaited diagnosis. Nephroblastoma – cancer of the kidney!
“One hospital had previously diagnosed Marline with an enlarged spleen. At Bliss Healthcare, the doctors told me that I needed to be prepared because my daughter was about to take a long journey that may cost my family everything. When they said the word cancer, I went into shock, then denial. I told them that was impossible. There was no history of cancer in our family…,” says the special needs teacher.
A long and agonising battle
If Julius’ reaction was strange, then his wife’s was out of this world. She went into total denial saying Marline had been bewitched.
“My wife not only threatened, but also attempted to pull Marline out of hospital several times. When she realised I wouldn’t allow her, she ran away from our home and went back to her mother. Thankfully, my mother-in-law was more understanding and wiser. She told my wife that if Marline was bewitched, then she needed to go back home and pray for her deliverance. That is how my marriage was saved,” confesses the 50-year-old, adding that was when it dawned on him that everything now rested on his shoulders.
“I realised the responsibility of making sure Marline was bathed, changed, fed and so on was entirely mine. It was tough at the beginning as traditionally these are things women do. Thanks to my exposure in dealing with children with special needs I embraced these new roles wholeheartedly. They also made me more aware of my students and their parents,” he says.
Marline took the news quite well when her condition was explained to her and was told the swollen part of her stomach was going to be removed. She didn’t seem afraid and her only concern was whether she would get an injection.
According to Phillip Ouma, a clinical psychologist and the patient support manager at Faraja Trust, children’s cancers are rarely given the attention they deserve. There is little awareness and often children find it hard to verbalise their symptoms. There is also the other challenge of dealing with the inevitability of death.
Children, whether sick or not, tend to be confused about death if the issue is not discussed. They need to be prepared to handle the trauma of watching their friends die or to understand it may happen to them.
“You can’t tell children they’re going to be okay if they aren’t. You need to be there for them and continually assure them of your love and affection,” he advises.
Doctors advised Julius to take her daughter to Kenyatta National Hospital (KNH), which was better equipped to handle her condition. He faced many challenges as he didn’t have an NHIF card for Marline, nor had he followed up on her birth certificate.
When he got these vital documents in place, he sadly learnt that it would take another one month before Marlene could get started on treatment at KNH.
He made the decision to take her to the Shoe4Africa Children’s Hospital in Eldoret where chemotherapy was started immediately.
The side effects of chemotherapy were devastating. “Her face and tongue became swollen and she was unable to eat. They had to feed her through a tube in her throat but Marlene would pull it out until she got too weak to manage even the simplest of tasks. Seeing this happening to my daughter was distressing,” says an emotional Julius.
Marline endured 15 chemotherapy sessions to shrink the 3.5-kilogramme mass that had grown on her left kidney before surgery could be carried out.
But just when things were looking up and she was ready for surgery, the 2016 doctors’ strike hit. She was being prepared for theatre when the strike was announced. We moved her from hospital to hospital looking for an affordable private facility and when we could not find one took her back to Shoe4Africa hospital to wait out the strike.
By a stroke of luck, a temporary deal was brokered between doctors and the government and within that window Marline had her surgery. She was then referred to Faraja Cancer Centre for radioactive therapy. By this time Julius had completely ran out of money and things were getting complicated at work.
“I was away from work so often until I was asked to relinquish my post as head teacher,” he says.
“I thank God that Faraja Cancer Trust found a sponsor for Marline’s treatment. She has just completed her radioactive cycle of treatments but will need to be monitored before she can be declared cancer free,” says Julius.
He adds that many people said Marline would die. Her name was even struck out from her school’s register but through God’s will she is still alive and looking forward to going back to school. Out of the 10 children she started treatment with eight have already died.
To help children cope with the ravages of the disease, Faraja Centre offers several therapies.
“We have a Crafts for Cure – an art therapy programme where children indulge in arts and crafts. This is aimed at giving them an outlet for their emotions. If they just want to talk about their feelings or draw out their emotions, we simply listen and engage with them at their level,” Philip explains.
Faraja also offers support to parents. “Having a child with cancer tends to put tension in the family, which sometimes can lead to separation or even divorce. One of the hardest things to deal with is when a child has gone through treatment but does not respond and the only option left is palliative care. In such instances, we prepare the parents for life after the loss of their child (anticipatory grief),” Phillip says.
Phillip decries the state of research in children’s cancers in Kenya. “It is high time the country focused on full spectrum studies on all cancers. Cancer in children should not be a death sentence. In fact, children are more resilient and do much better than adults when they get the right treatment,” he says in conclusion.
*Marline has since been declared cancer free