Walking the walk with children – a private paediatric oncologist’s insights

As much as it is parental instinct to protect your child against traumatic news, such as a cancer diagnosis, it’s virtually impossible. Parents and the patient are entitled to know the full extent of the problem so they can be empowered and educated. The clinician’s job is to earn their trust, hold their hand through the journey, and make it as safe and pain-free as possible. That’s how Dr Monica Vaithilingum, a private paediatric oncologist and haematologist approaches her patients. She expounds on this topic.

Dr Vaithilingum’s patients range from newborn to 18 years of age. She recently visited a four-year-old, who had a stem cell transplant for his leukaemia at Groote Schuur Hospital, in Cape Town. The boy, without his family and friends in a strange city and hospital, lit up at her unexpected appearance. She was in Cape Town, attending a board meeting of The South African Bone Marrow Registry and stole 10 minutes to look in on her patient. Monica, who’s been treating cancer-affected children for 21 years in the state and private sectors, continues in her own words:

The first thing I want people to know is that the earlier the child is diagnosed, the better the outcome. It’s important for all people and clinicians to be aware of the signs and symptoms that need referral. We come across too many delays in diagnoses. Patients sometimes come referred, having gone to three or four doctors with persistent symptoms. When symptoms persist, and remain unresolved, they need to be looked at in more detail.

The second thing I want to emphasise is that most childhood cancers have a better outcome than adult ones, especially leukaemia. It’s important to know that, depending on the type and stage of cancer, we have a good success rate in managing, and even curing children.

Acute Lymphoblastic Leukaemia (ALL) is the most common cancer among children and has a very high cure rate. I always endeavour, even though I’m sure it feels like people are being inundated with information, to emphasise this optimism. Obviously, at the beginning you literally take it one day at time, otherwise it’s overwhelming.

Being honest with children about their diagnosis

It comes down to building my relationship with the family and child.   I attempt to take the level of understanding of the child into account. You’d be surprised how much a three- or four-year-old can understand. The more they’re prepared for what’s going to happen on a particular day, the better. Preparing children emotionally  is crucial.

As a rough rule, any child older than eight needs to be part of the discussion. Obviously, you’re sensitive to the language and words you use. Often, the fear of the unknown is worse than the fear of the known. Yes, there are parents who go into denial or want more to be done.

As caregivers, we have to do good, but also be cognisant of not doing harm. For example, there comes a time when you have to consider if an aggressive curative treatment plan is really best. You always have to prepare the family and child if you’re heading towards switching your therapy from curative to palliative intent. It’s a process. It won’t happen overnight. We, as clinicians, need to take stock of what we’re hoping to achieve.

Being a single mother myself, it’s not easy breaking this news to another mother. This, together with the focus of caring for my patients, is what drives me on a daily basis. It’s my reason for getting up each morning.

I find it gratifying taking a18-month-old sick child diagnosed with cancer, who can barely talk, all the way to university and seeing that child graduate. To be privy to that makes it all worthwhile. Many parents keep in contact and let me know where their kids are. Recently, I lost a two-month old. It was difficult. Often you cannot help but cry with patients and families too. It never gets easier. Each loss takes its toll.

Giving children the care they need at every step 

So often as clinicians, we’re separated into units. I’m fortunate to have a partial multi-disciplinary team, including a paediatric surgeon, dietitian and physiotherapist. I’m finalising assistance from CHOC (Childhood Cancer Foundation of South Africa), and rely on other NGOs, like CANSA (Cancer Association of South Africa) and Hospice, for further support.

When it comes to the minority of patients who need exclusive palliative care, I assess where they are first. They need to feel safe with the environment and able to express themselves. I give them freedom to ask me anything and promise to always be honest. Sometimes parents don’t want their child to be told. Therein lies a big dilemma, because the child intuitively knows it’s not going as it should.

When you’ve moved on to a palliative care plan, it’s important that the patient and family have a say in how that unfolds – where they’ll be managed, what resources they have, and are they emotionally supported at home or in the hospital?

If they feel equipped in these areas and are also financially prepared, I always give them the choice of home or hospital care. As far as possible a child should not be in a hospital. Unless, of course, it’s medically required or the family requests it.

“There’s quality of life and living, but there’s also quality of death and dying. Dignity needs to be present in both.”

There’s quality of life and living, but there’s also quality of death and dying. Dignity needs to be present in both. Children sometimes say they need to know if they’re going to die. I’ll never forget a young boy who wanted to know if he was dying. I found out afterwards that he went out and bought all his siblings gifts.

If I could wave a magic wand…

What I’ve learned from my work and chairing the South African Children’s Cancer Study Group (SACCSG) is that as a global goal, we want comprehensive access to the relevant medicine required, across units and across specialities. We need available medicine at a reasonable cost.

I also believe teenagers should ideally be treated in an adolescent unit. Teenagers have specific needs that are different to those of children and adults. The Red Cross War Memorial Children’s Hospital has a pod where teenagers can isolate themselves and listen to music or watch videos, or just socialise. Having peers around is hugely beneficial. Teenagers can be difficult when it comes to psychosocial issues, they need more time to deal with things, and even medicine compliance can be a problem. They’re at a naturally rebellious developmental stage, fighting for independence and autonomy. We have to acknowledge and address that.

Holding on to hope 

Speaking more generally, my message to all newly diagnosed patients is to hold on to any hope. You find hope in the smallest everyday things. There are days when I think ‘I need to do something different.’ Yet, when it all comes together and you see patients getting better and you’ve helped them through so many challenges over the years, it is incredibly gratifying.