Child cancer treatment

Children need more care

But, oncologists are not all that the children need. Balagadde says they have had to think outside chemotherapy to see how else they can help children recover fully.

One of those ways is to go the Walusimbi way.

“Treatment is not just what happens on the physical. It’s about emotions. It’s about peace of mind. That’s what we are seeing here,” she says.

Among the activities they focus on are annual childhood cancer survivors camp. This was first held in August 2018. They also have the 3C programme which involves using children to talk about the problems that affect them the most.

Under the programme, she says, they will look for child ambassadors to go into schools, speaking about cancers, and teaching the community about cancer warning signs they should look out for. Most importantly, they will talk to them about services that are offered at the institute and other referral clinics around the country.

In the budget for such activities, Orem says, the institute has suggested that they are allocated Shs178million for increasing awareness and shs144billion to operationalise regional cancer centers in the new financial year.

Having patient hostels for those who continue to pick treatments from the Institute and yet they are from upcountry, he said they have been suggested to government as one of the unfunded priorities.

When this was put to the Commissioner Clinical Services at the Ministry of Health Dr. Jackson Amone, he said a patient hostel is a new term in Uganda which needs to first be studied not only about relevance but the legal issues that may arise. For instance, what happens when a child dies from there?

He said a policy on palliative care, which might cater for all that, is being drafted.

“We are costing it now. After that, it will be forwarded to the Ministry of Finance for a certificate of financial implication and then cabinet,” he said.

However, as healthcare managers embark on those plans, Dr. Samuel Guma a palliative care expert and Executive Director Kawempe Home Care, an NGO that offers end of life care warns that they should know that childhood palliative care is unique. The programmes, Guma says, should recognize children need to play, to be counseled, and to be understood. This includes children who recover from cancer.

“There should be a discussion about quality of cure. Children need to be prepared for treatment aftermath. There is pain and trauma that comes with chemotherapy. There are many complications that come out of treatment like heart disease and others,” he says.

Walusimbi who is no professional in this field agrees. From experience he says, he often sees recovering children becoming depressed, rejecting medicines even as they are responding because of what happens to them after swallowing medicine.

“At the end of the day a child is a child. When they get some little energy, you will see them running around playing. The next minute, they take drugs and become very sick, they can hardly swallow, at this time they need an explanation,” he says.

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