Part 1 – In the search for the best cancer therapy option,“knowledge is power”

April 8th can’t come soon enough for Becca and Nick. That’s the day PET scans and an MRI will be done to see if their 3-year-old daughter’s tumor is gone.

The scans will be conducted at St. Luke’s Medical Center in the Philippines where Georgia undergoes chemotherapy. They’ll be evaluated by her medical team in Manila and her proton therapy team some 1,600 miles away in Seoul, Korea, at the National Cancer Center’s Proton Therapy Center.

Diagnosed with an aggressive tumor on her lower spine just days after her birthday last June, Georgia received proton beam treatments at the National Cancer Center from November 19 through January 7.

Becca and Nick’s journey with Georgia and their son, AJ, has been so much more than the miles between Seoul and their Manila home. It’s been about finding — and at times fighting for — the best cancer treatment available for Georgia, “this little beautiful spark of life.”

And it was no easy path.

“As this process has taught us every step of the way, knowledge is power and we need help to overcome these challenges,” Becca observed on her blog, The Helping Georgia Fund. “We need to research all our options and we need to do it sooner rather than later.

“…All any parent wants is to make the right decision for their child. We don’t ever want to look back and have any regrets about our decisions and so the only way we can do that is to find out as much as possible, and keep asking questions. We know we can’t just take the first opinion that we are given. We have to ask for a second and third opinion. We have to get this right for little G.”

When they first diagnosed Georgia with a rare Ewing’s sarcoma, physicians at St. Luke’s Medical Center predicted a 20 percent chance of survival. At their recommendation, Becca and Nick moved quickly to get Georgia on an intense regimen of chemotherapy and experimental P53 gene therapy. This combination therapy would prove to be fairly successful at shrinking the sarcoma.

In August, about seven weeks into Georgia’s therapy, Becca and Nick were surprised to find a new person added to her medical team: a radiation oncologist. Up until then, surgical removal of Georgia’s spinal tumor was likely to occur in early October, following completion of a sixth round of chemotherapy. The medical team no longer supported surgery. The tumor was just too close to the spine.

“Our heads are now spinning,” Becca wrote on her blog that day. “It was explained to us that if the tumor has shrunk and is small enough the best option is to do SRS, which is Stereotactic Radiosurgery. This is like surgery but without a knife; it is known as ‘cyberknife.’ A laser beam is used via a CT scan from outside of the body and it puts a high dose of radiation into the tumor. It is an effective and fairly precise way to treat spinal tumors if they are relatively compact and not too large.

“So here is the problem: What if her tumor is too big to treat using SRS? We don’t want to do traditional radiation as that goes through the body killing anything in its path. We have to find the most precise method of radiation to treat G’s tumor with the minimum damage to the surrounding vital organs.

“I have been trying to research Proton Therapy (not easy unless G decides to have a sleep). This is also an external beam that delivers a high dose to kill the cancerous tissue without damaging the surrounding healthy tissues. The difference from SRS is that it can be given over a longer period of time in small doses and is used to treat bigger tumors.

“The problem is that there are only a few countries that offer Proton Therapy and that does not include the Philippines or the UK [where Becca and Nick’s families live]. If you have insurance or are an NHS patient, Proton Therapy is covered, but of course we have neither. We have not researched the cost yet but a figure of 120,000 pounds was mentioned and that is the treatment only. You also have the cost of travel and staying in the country for six weeks.

“The other problem is that we won’t know what size the tumor is until October and then we have to act fast and of course have a plan in place.

“The radiologist also mentioned today that she has used SRS for brain tumors and that the treatment has been used here at St. Luke’s for two years. But she has not used SRS on a spinal tumor on a pediatric patient before; Georgia will be her first time.

“Everything that I am reading about centers that offer Proton Therapy, these procedures have been done many times before.”