Young and Brave

September is Childhood Cancer Awareness Month. As the month draws to a close, our Stories of Hope honors the bravery of one of our young patients, Pham Gia Nhi and the love and determination of her family who journeyed alongside of her.

The Diagnosis

Pham Gia Nhi felt strange. The usually cheerful 10-year-old had been feeling out of sorts for the past few months. She couldn’t eat well, had frequent headaches and constantly felt sleepy and tired. But what affected her most, was her failing eyesight. She didn’t understand why she couldn’t see as clearly as before. All she really wanted was to be a normal kid, to play with her little brother and head back to school with all her friends.

Pham’s parents grew worried as they saw her condition deteriorate. Anxious for answers, Pham’s parents brought her to a hospital in Vietnam to seek help. It was there that she was discovered to have craniopharyngioma, a rare type of brain tumor, derived from pituitary gland embryonic tissue that occurs most commonly in children and young adults.

Pham’s mother recalled, “We were shocked, anxious and frustrated. We have never heard of this disease and we were all very worried that it would be incurable. Also, we were concerned about the cost of treatment due to our financial situation”.

Unfortunately, the surgeries in Vietnam did not go as planned. The family needed to seek urgent alternatives to save Pham. This led them to travel to Singapore, where they believed something could be done for them. It was the family’s first trip to a foreign country. Fortunately, they met Dr Rajendra Tiruchelvarayan, a highly experienced and skilled neurosurgeon, who assessed Pham and her scans thoroughly and came to the conclusion that the tumor which by now had come to occupy about a third of her brain, was at high risk of bleeding during surgery. Having worked together with radiation oncologist Dr Daniel Tan to manage Brain and Spine cancers, Dr Rajendra sent Pham to Dr Daniel to see if there were any solutions which technology could offer in her situation. That was when they learnt of Stereotactic Radiotherapy (SRT) offered by Asian Alliance Radiation & Oncology (AARO). Prior to this, they have never heard of this procedure.

Initially, they were concerned about how this treatment would affect Pham’s mental abilities as she was still very young and had her whole life ahead of her. But after consultation with Dr Daniel, they learnt more about how SRT, an advanced image-guided targeted radiation treatment, would affect as little surrounding brain cells as possible, while focusing the therapeutic doses of radiation onto the tumor. While some hair loss would be inevitable, there would only be minimal side effects and it would not cause much fatigue to Pham. They also learnt that the treatment was safe and painless and its costs were reasonable. That gave them the confidence to proceed with the treatment and hope for the best for their only daughter. More critically, seeing how rapidly the tumor had recurred over the past year even after four surgeries, they knew that their options were limited and were hoping that this technology would reverse its course.

The Journey

Pham and her family flew into Singapore and started her treatment during Chinese New Year 2020 and completed her treatment in Feb 2020, just before Covid restrictions were implemented. 28 daily treatments were carried out, with each treatment lasting 15-20 mins. As SRT is an outpatient treatment which required no hospitalization, it allowed Pham to head home after each treatment and spend time with her family throughout the course of treatment.

Pham and her parents exploring Singapore in the midst of her treatment, March 2020

The Treatment

Dr Daniel recalled, “When Pham first came to us in Jan 2020, her situation was critical. The tumor had grown uncontrollably and it had already blinded her. SRT was the only option that could save her. And for a patient as young as Pham, it was critical to preserve her brain function as much as we could. Combining beam shaping technologies with image-guidance,  we were able to target her tumor while sparing the surrounding tissue which was critical for her mental development. It was also paramount that every tumor track was correctly identified (especially when everything on an MRI was shades of grey, and proper identification was made worse by scar tissue from all the previous surgeries) because if any viable tumor was missed, it would grow again.

It was indeed a challenging case as we had to navigate very cautiously. These tumors have a cystic component – which meant that the tumor could be filled with fluid. High resolution scans needed to be conducted weekly to ascertain that the cyst remained the same size. If the cyst enlarged due to fluid retention, we would need to extract the fluid and rework our plans to ensure that the beams are correctly targeted at the tumor. 

After SRT

Because children are the embodiment of life, hope and future, seeing a child diagnose with cancer and undergoing treatment is never easy for the family or loved ones to bear. One can only imagine the emotions Pham’s parents experienced when they first heard of the diagnosis and the relief they felt when her health indicators stabilized and improved after completing the treatment.

Pham seen with her special toy given by Team AARO after successfully completing her SRT in March 2020

Dr Daniel’s heart went out to Pham and her family, especially since he is a father of a young daughter himself. Throughout her brain tumor treatment, he was impressed with little Pham’s calmness and maturity. While he could sense her fear, he saw how she steely persevered in every treatment and completed it.

In Pham’s own words, “ Thank AARO for giving me new rays of hope in my life so that I can reach towards my dreams and hopes”. Pham has since returned to Vietnam in late March 2020 and resumed school with her classmates.

Pham and her family on an outing, April 2021

Due to the covid-19 pandemic and restrictions, they were unable to return to Singapore for follow up consultations. But through the Virtual Oncology Consultation Program set up by AARO, Dr Daniel was able to order follow-up MRI scans to be done in Vietnam and arrange for them to be sent over to Singapore, where the scans were read and compared with pre-treatment scans. Post-treatment scans in December 2020 showed both tumor and cyst shrinkage and these corresponded with Pham’s physical condition. Although her eyesight is still affected, it has improved significantly – from groping in total darkness, to being able to make out light and color, to being able to see her brother’s face at close range again. Physically, she is growing up well just like her peers and taking hormonal replacements prescribed by the endocrinologist. Mentally, she is a bright and intelligent girl, coping well in school and eager to learn!

Virtual Oncology Consultation with Pham, Dr Daniel Tan, and translator Thuy

The team at AARO is thrilled to know that Pham is recovering well and poised to pursue her dreams and wishes her the best of health and a bright future ahead.

This season, we are privileged to celebrate our young Ambassador of Hope: Pham Gia Nhi.

Pham exploring Vietnam, April 2021