Another chance at motherhood

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Siti Juliana and daughter Nur Qamarina are now in Miri, where the girl is gradually regaining her motor skills.

THIS Mother’s Day, Siti Juliana Osman has a lot to thank for.

She is now with all her four children, especially her second youngest Nur Qamarina Mardi, 11, who affectionately calls her ‘Mami’.

Siti Juliana still remembers that frightful time a year ago, when Nur Qamarina was displaying unusual behaviour – the girl kept stumbling and feeling exhausted.

“It was during Ramadan, and she was not her normal self.

“Then, things got worse. She kept vomiting on the first day of Syawal (Hari Raya).

“I rushed her to a medical centre, where the doctors later referred her to Miri Hospital.”

When her blood-test results came out, the doctors discovered something alarming.

“They ran more tests on her. It was their worried faces that made my heart sank – I realised that it was not any ordinary illness.

“She was immediately scheduled for a biopsy,” Siti Juliana, 39, told thesundaypost in Miri.

Those results confirmed the presence of suprasellar non-germinomatous germ cell tumours (NGGCT), a rare intracranial tumour occurring in adolescents and young adults.

‘One ordeal after another’

At that moment, Siti Juliana realised the challenging road ahead, one that would truly put her patience and resilience to the test.

Following the biopsy, Nur Qamarina was placed in intensive care for close observation.

It was not long after that when another burden was thrown at Siti Juliana. Her youngest child Nur Amalina, aged nine, got struck down by an asthma attack and that required hospitalisation also.

The distraught mother was already burning both ends of the candle.

Later, Siti Juliana and Nur Qamarina were brought to Kuching, where the girl underwent more tests and treatments.

“I’m a homemaker. I never considered myself a brave person, let alone one who’s prepared to navigate the complexities of travelling with a sick child.

“My eldest son, Mohamad Aiman, came had come to Kuching to keep me company. During those three days when he was there, I could only concentrate on my daughter; my son took care of my meals and everything else.

“Honestly, I felt that I wasn’t a good mother at the time, because I could not care for my children equally.

“I was very disappointed in myself,” she lamented.

The scar on Nur Qamarina’s is a reminder of the trying times endured by the family over the past year.

‘Fear, uncertainties’

At Sarawak General Hospital (SGH) In Kuching, Nur Qamarina was undergoing chemotherapy to shrink the tumour as it was deemed too risky for her to go for surgery.

The abnormal cell growth occurred at the back of her brain, the site of the occipital lobe. If left unchecked, this could adversely affect her vision, balance, posture and coordination.

Throughout the treatments, complications arose. Nur Qamarina’s brain got swollen due to excessive fluids. The girl was experiencing episodes of hallucinations, and then, she slipped into a coma, which lasted for several months.

It was a horrific period for Siti Juliana.

“It felt like I already lost her,” the single mother recalled.

“I was already not mentally strong to begin with. I whispered good words into her ears every day – always calling her name, urging her to wake up. It was my greatest fear that I might never hear her voice again.

“This got to a point where I was very envious of the other parents in the paediatric ward whose children were always calling for them, especially the mothers.

“I was jealous in seeing them interact with each other.”

Siti Juliana said most of the time, she cried in silence.

“I didn’t know when my child would wake up again. I had fear and uncertainties as not even the doctors could provide a solution to this.

“A lot of things ran through my mind. As I cried, I prayed to Allah, asking Him to give me the strength and resolve in going through this.

“There was a deluge of calls and messages coming from family members, to a point that I had to shut down my phone. The stress and anxiety became too much for me to handle.”

Just as she was struggling physically and emotionally in Kuching, her marriage collapsed.

Not wanting to talk about it much, Siti Juliana said she knew that she had to soldier on as from that moment, she had become fully responsible for all her children: Mohamad Aiman, 20; Mohamad Aziman, 15; Nur Qamarina; and Nur Amalina.

Siti Juliana and her children (from left) Mohamad Aiman, Nur Amalina, Nur Qamarina and Mohamad Aziman.

‘Getting support’

Over the next several months, things had somewhat become a numbing routine for Siti Juliana.

Every day, she would change the bed sheets every day, make her daughter comfortable, and whisper good things into her ears.

However, there were some parts of it all that made the situation slightly bearable.

“I began to interact with other parents who were going through the same thing, and that helped get me through this difficult phase. It was actually a relief.”

The volunteers from Sarawak Children’s Cancer Society (SCCS) also kept a regular check on Siti Juliana.

“Perhaps, they thought I might need a shoulder to cry on, so they kept offering help.

“Not having any friend and relative accompanying me in the ward, I initially kept it to myself.

“So, it was deeply touching when the volunteers and the other parents came by and offered words of encouragement, telling me to ‘be strong’, checking to see if I was doing OK – those sorts of things.

“It was very comforting; it kept me sane. The rather unexpected bonding and support kept me going.”

‘Recovery, one step at a time’

One day in February this year, Nur Qamarina called for her mother.

“I was caught by surprise, and I had mixed emotions, but I was relieved that I finally got my daughter back.”

It took the girl several months to recuperate, and to be able to speak, stand and walk again.

“It felt like I was caring for a baby all over again – a big baby,” Siti Juliana flashed a smile, which signified gratitude.

“I gave birth to her, and I was there for her many firsts. So, I don’t mind doing it all over again, as long as I have my baby back.”

The tumours, however, were still present. Siti Juliana said after the doctors explained the risks from surgery, she decided that she was not going to let her girl go through all that.

“Putting her through a surgery that cannot guarantee full recovery or a chance for normal life – it’s just as cruel.”

Instead, Siti Juliana brought her daughter back to Miri where the girl slowly regained her motor skills – and also, the will to continue fighting.

Still, it took Nur Qamarina a while to be able to properly talk and walk again.

“At first, she was tiptoeing, and was babbling – I was told that these were common during the transition and recovery phase in a brain cancer treatment.

“For now, though, she would not be returning to study at SK Merbau – not yet,” said Siti Juliana.

Siti Juliana with her daughters in this photo, taken not long after Nur Qamarina’s return to Miri earlier this year.

‘Things to be thankful for’

Siti Juliana said the whole trials and tribulations had given her the chance to become a mother all over again.

“People say raising children is a hard job. True, but it was not until I had experienced all these ultimately difficult moments, including almost losing my child, that I now have the insight on what it means, and what it takes, to be a strong mother.

“My eldest son will soon turn 21. I feel sorry for not being able to take care of my other children over the last year. Words are not enough to show my love and thanks to them for managing things that I could not do for them.”

Siti Juliana said her eldest, Mohamad Aiman, was supposed to be undergoing his internship, but he had to put that off as the family needed him.

“This is my burden of regret. I cannot help but feel that because of my absence, my son had missed out on his opportunity to secure a better future,” said Siti Juliana, while holding back tears.

Nonetheless, this single mother believed that she deserved some time for herself.

“I am giving myself this break. I would see how things would go.

“I want to find a job and provide for my household, and I want my children to be able to focus on their studies.”

Siti Juliana also expressed her gratitude to the SCCS for being a pillar of support; to the other parents for their words of encouragement even when they were struggling too; and to all the doctors and nurses for their care and attention.

In this regard, she felt that she should contribute towards raising public awareness of childhood cancer.

“I’m considering getting my head shaved for the Go Bald campaign, but my daughter is against it.

“I will continue to convince her that even if her ‘Mami’ turns bald, I am still the same mother who loves her very much,” she said.

Miri will kick off the first leg of the Go Bald campaign at Permaisuri Imperial City Mall, this June 16.

The next leg will take place at Aeon Mall Kuching Central on June 30.

Founded in 2009, Go Bald is the signature fundraiser for the SCCS, where every shaved head represents an understanding by an individual of the ordeals that a child with cancer is subjected to.

Through this campaign, the SCCS aims to raise awareness of childhood cancer in Malaysia, provides a public demonstration of moral support to cancer patients and their families, and raise funds to help children with cancer, and their families.