Dads stepping up to the plate
20 June 2010By BRIGITTE ROZARIO
Mohd Shah Awaluddin, business development manager with a trading company, is dad to six children. Three years ago, his fifth child - Nurul Islah – was diagnosed with brain tumour. She was just eight years old then.
Initially she complained of headaches and poor eyesight. In school she asked to be seated in the front of her class. That was in early 2007. A few months later, the headaches became more regular and they were followed by vomiting.
Her parents took her to two ophthalmologists who confirmed there was nothing wrong with her eyesight or her eyes. They recommended her for a CT scan.
That's when her family found out there was a tumour (medulloblastoma) at the back of her brain. At that time the doctor said it was about Stage 4. They operated and managed to remove almost all of the tumour. She then had to go for chemotherapy and radiotherapy.
“The surgery was a high risk one. We are thankful that she came out fine although she has lost her balance. Importantly, we still have her.
Mohd Shah Awaluddin, business development manager with a trading company, is dad to six children. Three years ago, his fifth child - Nurul Islah – was diagnosed with brain tumour. She was just eight years old then.
Initially she complained of headaches and poor eyesight. In school she asked to be seated in the front of her class. That was in early 2007. A few months later, the headaches became more regular and they were followed by vomiting.
Her parents took her to two ophthalmologists who confirmed there was nothing wrong with her eyesight or her eyes. They recommended her for a CT scan.
That's when her family found out there was a tumour (medulloblastoma) at the back of her brain. At that time the doctor said it was about Stage 4. They operated and managed to remove almost all of the tumour. She then had to go for chemotherapy and radiotherapy.
“The surgery was a high risk one. We are thankful that she came out fine although she has lost her balance. Importantly, we still have her.
| Shah: 'I always thank God that I still have her and I can still take care of her.' |
“I always thank God that I still have her and I can still take care of her, that I can still hear her laughter and see her cry,” says Shah.
Due to her tumour, Nurul Islah is now disabled because she has lost her balance and needs a rollator (walking aid) or some assistance when walking. One side of her facial muscles don't work either. As a result, when she speaks certain words are not clear.
“I was shocked when I read the radiologist's report saying there was a 'mass' in her brain. I didn't know then that it was cancer but I knew it was a tumour and that was bad enough. All the while my wife and I have tried to be as careful as possible with what we eat and what the children eat and we try not to expose them much to toxic material. So naturally we were shocked to find out our daughter had a tumour.
“But with more reading and talking to the doctors we realised that it can happen to anyone and especially for young children. So, it's not a lifestyle issue. It is an act of God that she is chosen to have this challenge and at such a young age, too.
“Certain things are fated and no matter how difficult these things are there are certain reasons for them. The key is how do you take it from there. My wife and I discussed this and we communicated this with her and her siblings and we reasoned out that there are things which can still be done.
“We also put in effort to make sure that our daughter could do things. For example, because she can't move well and she can't play sports, we decided to let her try making speeches even though her pronunciation is not as good. At last year's Relay for Life (organised by the National Cancer Society of Malaysia) she was one of the speakers. I am also involved with several NGOs so whenever they have any cancer programmes she is invited to share. We try to make her life as meaningful as possible.
“My wife has taken on the main caregiver role. As a father, I prepare her breakfast and take her to school every morning. I used to walk her right up to her class but I don't do that anymore because I want her to be more independent. I just watch from afar now. Fortunately, her schoolmates have been educated to be more caring towards her so they do assist her a bit. But as far as possible I try to make her independent,” he says.
Shah believes that no matter what happens, there is always something positive that you can take from the experience. What has already happened cannot be undone, he explains. So, the next best thing is to make the best of the situation and turn it into a positive experience.
For him and his family, this meant forming a support group for parents of cancer survivors and sharing their experiences with others.
While devoting time and energy to taking care of Nurul Islah, there have been many other considerations, too.
Shah and his wife had to ensure the other children didn't feel neglected and forgotten because of all the attention on Nurul Islah.
He explains that it has also been important for him and his wife to make time for each other no matter how fatigued they were.
For Shah and his family, it was a bonus that they had a good support network to rely on.
“You have to know when to get help. In the initial period, we had a maid. Later on we had a weekend helper. Because our extended families are quite close they do support us as well. That's why we helped set up a support group for families – to educate parents and the extended families. Extended families need to be pro-active because most parents won't ask for help. You have to know what to do and how to help.
“We are very fortunate. Even though we are not rich, we have a very good support network and close family ties. So we were able to go through it and we are managing to pull through.”
Due to her tumour, Nurul Islah is now disabled because she has lost her balance and needs a rollator (walking aid) or some assistance when walking. One side of her facial muscles don't work either. As a result, when she speaks certain words are not clear.
“I was shocked when I read the radiologist's report saying there was a 'mass' in her brain. I didn't know then that it was cancer but I knew it was a tumour and that was bad enough. All the while my wife and I have tried to be as careful as possible with what we eat and what the children eat and we try not to expose them much to toxic material. So naturally we were shocked to find out our daughter had a tumour.
“But with more reading and talking to the doctors we realised that it can happen to anyone and especially for young children. So, it's not a lifestyle issue. It is an act of God that she is chosen to have this challenge and at such a young age, too.
“Certain things are fated and no matter how difficult these things are there are certain reasons for them. The key is how do you take it from there. My wife and I discussed this and we communicated this with her and her siblings and we reasoned out that there are things which can still be done.
“We also put in effort to make sure that our daughter could do things. For example, because she can't move well and she can't play sports, we decided to let her try making speeches even though her pronunciation is not as good. At last year's Relay for Life (organised by the National Cancer Society of Malaysia) she was one of the speakers. I am also involved with several NGOs so whenever they have any cancer programmes she is invited to share. We try to make her life as meaningful as possible.
“My wife has taken on the main caregiver role. As a father, I prepare her breakfast and take her to school every morning. I used to walk her right up to her class but I don't do that anymore because I want her to be more independent. I just watch from afar now. Fortunately, her schoolmates have been educated to be more caring towards her so they do assist her a bit. But as far as possible I try to make her independent,” he says.
Shah believes that no matter what happens, there is always something positive that you can take from the experience. What has already happened cannot be undone, he explains. So, the next best thing is to make the best of the situation and turn it into a positive experience.
For him and his family, this meant forming a support group for parents of cancer survivors and sharing their experiences with others.
While devoting time and energy to taking care of Nurul Islah, there have been many other considerations, too.
Shah and his wife had to ensure the other children didn't feel neglected and forgotten because of all the attention on Nurul Islah.
He explains that it has also been important for him and his wife to make time for each other no matter how fatigued they were.
For Shah and his family, it was a bonus that they had a good support network to rely on.
“You have to know when to get help. In the initial period, we had a maid. Later on we had a weekend helper. Because our extended families are quite close they do support us as well. That's why we helped set up a support group for families – to educate parents and the extended families. Extended families need to be pro-active because most parents won't ask for help. You have to know what to do and how to help.
“We are very fortunate. Even though we are not rich, we have a very good support network and close family ties. So we were able to go through it and we are managing to pull through.”
| Nurul undergoing one of her physiotherapy sessions. |
What are his fears for Nurul Islah?
“My fear for her is that we may not be around. Her disability looks like it may be permanent. The surgeon said if she doesn't recover within the two years after surgery, it may be permanent. But we are not losing hope because we do see very gradual improvements. Nurul Islah is continuing with her physiotherapy, occupational therapy and even her speech therapy. We take her for walks in the park for exercise. But I fear that if my wife and I have to leave this world earlier than her she may not be ready.
“Of course she has her elder siblings but they are all still studying.
“My second fear is that the cancer relapses.
“Right now, according to the radiologist, she has received the maximum radiotherapy and chemotherapy treatment. If there is a relapse the only option is surgery again but we do not know how effective that will be.”
Watching your child go through major brain surgery and treatment for a brain tumour is indeed a harsh reality.
Says Shah:
“One of the biggest realities that we have had from this tribulation is that life can be snuffed out just like that. When we look at it now we realise she has survived for the past three years. When she was first diagnosed we thought we might not get to see her much longer. But then along the way we have seen the passing of other children who were not even diagnosed with anything.
“So, we have learnt to cherish every day and to take it one day at a time. Take every day as a gift. If you think about it, what guarantee do we have that you and I will be around tomorrow?”
“My fear for her is that we may not be around. Her disability looks like it may be permanent. The surgeon said if she doesn't recover within the two years after surgery, it may be permanent. But we are not losing hope because we do see very gradual improvements. Nurul Islah is continuing with her physiotherapy, occupational therapy and even her speech therapy. We take her for walks in the park for exercise. But I fear that if my wife and I have to leave this world earlier than her she may not be ready.
“Of course she has her elder siblings but they are all still studying.
“My second fear is that the cancer relapses.
“Right now, according to the radiologist, she has received the maximum radiotherapy and chemotherapy treatment. If there is a relapse the only option is surgery again but we do not know how effective that will be.”
Watching your child go through major brain surgery and treatment for a brain tumour is indeed a harsh reality.
Says Shah:
“One of the biggest realities that we have had from this tribulation is that life can be snuffed out just like that. When we look at it now we realise she has survived for the past three years. When she was first diagnosed we thought we might not get to see her much longer. But then along the way we have seen the passing of other children who were not even diagnosed with anything.
“So, we have learnt to cherish every day and to take it one day at a time. Take every day as a gift. If you think about it, what guarantee do we have that you and I will be around tomorrow?”
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