Living with childhood leukaemia
Posted on 15 September 2016
While the childhood leukaemia diagnosis was a shock, Kathy Singery and her husband’s positive attitude has helped their son – and his three siblings – to handle the disease.
‘Daniel is doing exceptionally well, both mentally and physically,’ says Kathy. ‘We’ve all been very positive from the start – statistically, we have every chance of beating this. There are some testing and trying times, but those are bad moments, not bad days.’
Motherly instincts led to earlier childhood leukaemia diagnosis
When she noticed irregular swelling in the glands around Daniel’s neck and ears on the 8th of June, Kathy immediately took him to their GP, who advised her to return in six weeks. ‘As an observant mom and knowing it couldn’t be right, I got a second opinion the next day,’ she says. ‘However, his bloods tests came back normal. I called the doctor again on the 17th to say I was worried. Although Daniel wasn’t feeling sick or running a temperature, his glands were still very, very swollen.’ Further blood tests revealed that his white blood count was up by 70 from the previous week. Daniel was admitted into ICU and after a consultation with a haematologist, T-cell acute lymphoblastic leukaemia (T-ALL) was provisionally diagnosed.
‘We immediately started the regime of steroids, antibiotics, blood tests, bone marrow biopsy and insertion of the Groshong line [an intravenous catheter]. Chemo started that same week. We’ve been through the first two rounds of chemo – both lasting around a month each, and at the moment we’re continuing a relatively normal life until we start the next round. Daniel has responded phenomenally well to treatment so far.’
All about attitude
Although they’re well aware of the risks, the family’s positivity and humour have been invaluable in coping with the ups and downs they’ve faced after the childhood leukaemia diagnosis. ‘After the initial shock, we made every effort to normalise our situation as quickly as possible,’ says Kathy.
‘I kept saying that although the situation wasn’t what we’d planned, it was what it was and all we could do was decide how we respond to it. I have a WhatsApp list of approximately 500 people I update daily – I believe that if as many people as possible know how Daniel is doing, it takes away the terror of the disease. Fear is such a defining emotion, but there’s more chance of getting it right than wrong.’
‘What we’ve learnt’
While lessons vary from parent to parent, a calm attitude has worked best for the Singery family. ‘The biggest factor is honesty and maintaining calm and logic,’ says Kathy. ’Don’t imagine what could happen – deal with what is happening as it happens. Most of all, try to find a balance between being there for your child and allowing them to find their own feet. Obviously this is age and situation appropriate.’
The family has also learnt the importance of accepting help and keeping people updated in a way that works for them. ‘Choose a person you trust to bounce information off – not for an emotional response, but rather for a practical one. There’ll be a lot of emotional people around you, but try not to let their emotions rub off on you. Don’t live in fear – don’t live like your child could die, live like he will live.’
Join the fight on Sunflower Day
Working to fight both adult and childhood leukaemia, the Sunflower Fund is dedicated to creating awareness, educating the public and facilitating the registration process for people to join the South African Bone Marrow Registry.
The fundraising initiative Sunflower Day replaces National Bandana Day and takes place on 16 September this year. The organisation has also unveiled a new product to replace its iconic bandana – the Tope, or tube of hope, is a multipurpose article of clothing that can be worn as a headband, mask, scarf, cap or armband. The Tope is available in small (R20) and large (R25) and is on sale at Pick n Pay stores nationwide, Round Table, selected ICPA pharmacies and the online store Zando, while stocks last.