Budi’s Story

What do you do when your child suddenly loses his sight?

 

Patient Name          Budi
Age                        7 years old
Admission Date       May 2014

 

Budi was five when he started complaining of headaches and blurred vision. He was also vomiting four to five times a day. After three weeks, when the symptoms did not abate, his mother decided to take him to the local clinic. The doctor diagnosed Budi with shortsightedness and prescribed him with spectacles.

When the symptoms continued and he started losing his sight, Budi’s mother took him to the hospital. After several tests, Budi was diagnosed with a neuroblastoma – a nerve-related cancer that commonly affects children. In Budi’s case, these nerve cells were found in the areas around the brain that were putting pressure on his eyeballs and causing severe headaches.

Budi was put on the waiting list to have his tumor removed. After 4 weeks of waiting and the headaches and vomiting worsened, Budi’s mother decided to take him back to the first hospital (a private hospital), despite the expense. There, the doctor told them that Budi’s condition had worsened (stage IV) and needed to be operated on as soon as possible.

Two days before the New Year in 2013 and almost 4 months since he first complained of headaches, Budi was wheeled in for the surgery. The tumor was removed, and a VP shunt was installed to drain the excess fluid that was building-up in the intercranial region. Unfortunately, after the surgery Budi lost his speech.

FACT CHECK: WHAT IS A NEUROBLASTOMA?

  • One of the most common cancer affecting children under 5 or younger
  • There are 750 cases per year diagnosed in the UK and US
  • They are often diagnosed in patients between the ages of one and two, and often begin in the nerve cells

Living with your child’s illness…

In March 2014, 15 months after the surgery, Budi started to regain his speech. While his speech returned to normal, he sadly never regained his sight. There were moments when Budi would pray out loud to negotiate with God for the return of his sight, in exchange for “anything”!

At around the same time, while still undergoing chemotherapy treatment, Budi started to have seizures coinciding with each time the chemotherapy drugs were administered. A CT scan result revealed that a build up of fluid had started again in the intercranial region of his brain and the VP shunt was once again installed. Budi was admitted in the hospital for three months after the procedure.

Accepting the end of treatment

In April, the seizures had continued with increasing regularity. Budi’s parents were informed that the tumor had unfortunately stopped responding to the chemotherapy treatment and the doctor suggested a home-based palliative care for him and referred him to Rachel House. Budi and his parents came face to face then with the harsh reality: that he would most likely not recover from the cancer.

In Budi’s case, he was blessed with a beautiful mother who dedicated her every waking hour to keeping him comfortable, happy and loved. Rachel House’s nurses together with the volunteers were there to give every support she needed to help add quality to Budi’s remaining days.