Sharing the Load

Six year old twins Courtney & Claudia Sammut share beautiful brown eyes and a love of swimming, drawing, colouring-in, dancing, dolls and dressing up. While Courtney is loud and blasé, a relaxed child who likes to wind her sister up, Claudia is sensitive, quiet and meaningful - she tends to think things through, and already shows signs of being a “hoarder”.

The twins shared their birth on the 8th November 1998. A few years later they shared the loss of their two front teeth and then their first day of school. However shortly after starting school Claudia and Courtney faced a drastic change in their lives that couldn’t be shared, and yet has become a joint burden.

Claudia began experiencing violent headaches and vomiting. Initially this was thought to be the result of a virus, but the “virus” was still there 8 weeks later. Claudia’s parents Samantha and John began to worry. Claudia was referred to a specialist at Starship Children’s Hospital for a scan. The following day Claudia and Courtney were whisked off by a nurse and Samantha was left alone in a room waiting for the doctors to come in. When they walked into the room, Samantha felt like she might pass out. Before they even spoke she realised she was about to hear something serious and could not cope with whatever it was. Her worse fears were realised as they told her Claudia had a cancerous brain tumour. Stunned numb, Samantha phoned her husband John, but does not recall their conversation. Desperately she pleaded with doctors, “You can take it out. Right?”

Claudia spent the next week and a half in HDU awaiting specialist surgeon Andrew Law’s return. She was given steroids to relieve the intense pressure in her head (which had been causing the vomiting). Samantha found herself unable to tell Claudia what was wrong with her, although she was strongly urged to do so, she felt that it was too much of a burden for her daughter to bear at this point. Courtney was also very upset; she was taken home with her Dad and felt very scared in the absence of her sister and Mum. She understood that something was very very wrong.

John stopped work, feeling emotionally collapsed, he went into shock. Sam quit her part time job to focus solely on the situation. The news of the tumour and surgery had come within a day of Samantha’s birthday. She did not celebrate it. She was urged to try and enjoy her time with her daughter before the operation, but this advice merely distressed her more as it seemed to imply “it may be all you have.”

Around the last week of March 2004, Claudia was prepped for her operation. Samantha finally told her that she had a lump in her head and that the doctor was going to take it out. Seeing “men in funny suits” surrounding her and her mother in a gown and facemask, Claudia became extremely anxious and upset. Samantha and Claudia both wept as she was wheeled in for surgery.

During the five-hour operation, part of the tumour was removed but part of it had to be left behind as it was, and is, wrapped around the pituitary area, (which has caused Claudia to lose a lot of her sight in one eye).

Afterwards, when Claudia was in recovery and Samantha was still in a state of agitation, Claudia turned to her mother and said “don’t worry mum, because worry makes you sick”. Surgeon Andrew Law was pleased with this early indication that Claudia had not been adversely affected by the operation.

Following the operation Claudia was put on a 60-week cycle of chemotherapy. Understandably Claudia has come to hate Wednesdays, the day she receives chemotherapy, and resists week after week, insisting, “I am not going”. It is a struggle for Samantha to convince her child to go through this process, one that causes her to feel extremely nauseous, throw up and have a big headache. She is also zapped of all energy for the following 24 hours or so. At the time of writing this article Claudia has 6 cycles to go, which, all going well will see her last treatment taking place in June/July.

While Claudia has barely been at school over the past year, Courtney has also missed a lot of school due to the strain placed on the family. For a while she simply didn’t want to go. While previously she had always been the confident outgoing twin, this experience shook her little world and left her afraid and insecure. She said she didn’t want to go to school “alone” and felt anxious away from her family. Courtney has also expressed feelings at times that she isn’t as well loved as Claudia. This has been tough on Samantha as a Mum - trying to divide her energies between a child who needs her because she is ill, and a child who needs her because she feels left out.

The twins have both recently received scholarships from the Child Cancer Foundation to assist with filling the gaps in their education. These allow Courtney to attend Kip McGrath for extra tuition while Claudia has an ongoing teacher aide. Later on Samantha would like to explore the idea of sending the girls to a drama class, feeling they have a natural tendency for it, (certainly these girls have great imaginations, they interrupt the interview to point out the “fairy houses” in their backyard, which turn out to be a group of toadstools growing in the lawn).

Samantha helps Claudia to write stories “if she’s up to it” and occasionally she will go in to school to interact with her classmates and teachers and pick up work assignments, but Samantha doesn’t force her, believing life is too short and precious. She would rather see Claudia doing whatever makes her happy and relaxed.

Before she got sick Claudia wanted to be a lawyer when she grew up, now she just wants to be someone who “takes lots of holidays and has lots of fun.” At this moment Courtney yells out from the next room that she would like to be a hairdresser. Claudia quietly considers this and decides maybe she would like to be a hairdresser too.