Jasem and the monster ...

Our one-year-old boy, Chen-Wei or Jasem, has been diagnosed with hepatoblastoma last January 3, 2006. His Afp (Alpha Feta Protein - amount of disease in a body) was 400,000 something at that time… normal is below 20. Our oncologist Dr. Hong was so sure that it was hepatoblastoma but still a surgical biopsy was done to confirm her diagnosis. The day after the biopsy took place, a port-a-cath was inserted in his right chest. It was a 3-hour surgery started at 10:51am on January 5, 2006. Jasem was born at 10:51pm by the year 2004, coincidence? Because of the need to intravenously access him, this device will be used for an easy blood withdrawing, transfusions, and chemotherapy.

How did we find it out...

It was the first day of 2006... Jasem was watching the Teletubbies in our room when I (his mom) suddenly noticed him rolling down the carpet. Although my 19 month old baby still can't tell what he feels... I'm so sure that he was in pain that time. I got him out of the carpet and took an ointment that I thought will relieve his pain. But to my surprise as I pull up his shirt, I felt a mass in his right abs. Frightened, I asked my husband and mom-in-law to take a look on what I've found. They were trying to convince me

that it was just gas or something that he picked-up then swallowed. Whatever it was, I thought it was something that needed to be consulted to a physician so they hurried him to the clinic even if it's sunday. The doctor confirmed that it's not gas or a thing that was inside... it's something that was growing and it's growing so fast. The doctor advised us to bring him to Chang Gung Memorial Hospital the next day.

January 2, monday, at the CGMH... blood testing, x-ray and CT scan were done consecutively in a day bcos the doctors themselves were alerted. The next day, the diagnosis came out.

 

ABOUT HEPATOBLASTOMA

The following is taken from St. Jude Children's Research Hospital and Lucile Packard Children's Hospital at Stanford

Definition

Hepatoblastoma is a very rare cancerous tumor that originates in the liver. The liver is one of the largest organs in the body. The primary functions of the liver include filtering and storing blood. The liver consists of right and left lobes. Most hepatoblastoma tumors originate in the right lobe.

Incidence

• Liver tumors account for 0.5-2 percent of pediatric tumors and are the tenth most frequent tumors in children.
• Hepatoblastoma has an incidence of 0.9 per 1 million children.
• The median age of diagnosis is 1 year; most patients are diagnosed by 2 years of age.

(see... it's like Jasem winning the lottery)

Survival Rates

• Cure of hepatoblastoma is possible when the tumor can be completely removed by surgery. However, this is possible for only about half of the patients at the time of initial diagnosis.
• Hepatoblastoma is usually sensitive to chemotherapy and with treatment the tumor will shrink enough to allow total resection.
• Children whose tumor has spread outside the liver rarely survive long-term. (The doctors assured as that Jasem's tumor doesn't spread outside his liver, but they told us that if the tumor doesn't return within 5 years after the surgery, that's the time we can say that he's completely cancer-free)

Treatment Strategies

• Until effective chemotherapy became available, complete surgical resection was the only successful treatment option. However, the procedure carried significant risks because these tumors typically form an excessive number of blood vessels – making them difficult to remove. Tumors that couldn’t be removed progressed. This situation changed in the early 1980s when several studies produced cure rates of 70 percent by adding chemotherapy for initially unresectable tumors, followed by total resection after the tumor shrank sufficiently. This combined approach is now the standard of practice in the United States and in Taiwan.
• In tumors that involve the whole liver, liver transplantation from a donor is sometimes an option.