Part 7 – In the search for the best cancer therapy option, “knowledge is power”

When they first diagnosed 3-year-old Georgia with a rare Ewing’s sarcoma in June 2012, physicians at St. Luke’s Medical Center in the Philippines predicted a 20 percent chance of survival.

Amazingly, four months of chemotherapy and experimental P53 gene therapy had reduced the tumor on Georgia’s spine by 70 percent. But the side effects of those treatments also ravaged her tiny body.

In October, Becca and Nick had to choose which radiation treatment would best kill the last bits of their little girl’s tumor — and do so with as few serious side effects as possible.

Radiation oncologists at a hospital in London had reviewed Georgia’s PET scans and tipped their hand slightly in favor of Proton Therapy. Specialists in the Philippines had agreed on proton beam treatments, as well.

A teacher by training, Becca had done an amazing job mining medical information and evaluating the scientific evidence after Georgia and son, AJ, had been put to bed. But the rational was falling away to the emotional. The enormity of Becca and Nick’s looming decision was weighing on mom and dad.

On October 10, Becca wrote on her blog, The Helping Georgia Fund: “I can honestly say that these past few weeks and this week have been really stressful for me and Nick and until we know what the next step is for G, that stress is not going away. We are trying to take it a day at a time, but at the same time there are still so many questions we need answered.

“To see the stark truth about her tumor broken down into those points made us feel very dejected and just plain sad on Sunday.

“G is so happy and chatty and loves pottering around at home so to read that email and then sit with her as she chats away, is just surreal and heart grabbing. People say to us ‘cherish the moments’ and believe me we are trying to, but we don’t want to just cherish the moments. We want a whole lifetime of moments with G and AJ.

“…I think the stress is reaching G as this morning she said ‘Mummy why are you so sad? Are you going to cry mummy?’ The fact that she can even recognize and tune in to my emotions just makes my heart burst with love for our little girl; she is so switched on to how others are feeling. She has been really clingy with me at home, sometimes she literally screams if I leave the room and she is not with me.

“I find myself getting stressed out and unable to cope when she does this and then I hate myself for feeling like this. You know when you can feel the pressure mounting and the tiniest thing is going to send you over the edge? Well, that is how I feel at the moment. I also know it will pass and even as I write this I can feel myself getting it out of my system.

“Tonight it was my turn to put G to bed and she was busy wiggling her bottom at me, as 3-year-olds love to do. I was laughing and said ‘oh what a lovely view that is, what a lovely bottom’ G replied ‘is it the best bottom in the whole world mummy?’

“I am always telling her how she is the best girl in the whole world and universe and I love how she turns things around and applies it to situations. She is so utterly gorgeous and funny.

“I think Nick and I both know in our heart of hearts that Proton Therapy is the way forward for G. We have just had an email from our doctor at St. Luke’s and they have confirmed that this would be their first choice for G.

“So now we have to decide where to go and how to pay for it. Please if anyone has any connections at Jacksonville Proton Center, Florida or knows of any charities that can help with the funding please do let us know. If S. Korea is an option the costs are much lower but we daren’t get our hopes up.

“We have always said that we would love to take the children to see S. Korea and show them some of the places we used to go to. [Becca and Nick had taught school in Korea for seven years before moving to Manila to teach.] It might not be the holiday we had in mind, but it would feel right to go back to Seoul.”

As the last days of October approached, Becca seemed more comfortable with protons: “It does not have an exit dose, from all our research it still feels like it should be the number one choice.

“We have to get this right for G; we have to give her the best chance we can. The tumor is near her spinal cord. That means her spine is going to be radiated. We can’t avoid that. That can lead to long-term problems with her growth. Do we add a 6 percent chance of a secondary cancer to those risks as well?

“But then nothing has been proved yet with the long-term risks of protons but if there is no exit dose, it just makes sense to do that and protect what we can.

“Her poor little body is going to be exposed to so much. If proton is what G needs then we have to find a way to resolve all the other things. Seoul is where we used to live it feels right to have that interconnectedness.”

The next month, Becca and Nick moved their family from Manila to wintery Seoul. Georgia’s first proton treatment was on November 19. Her final treatment was on January 7, this year.

MRI and PET scans will be performed on Georgia in Manila on April 8, 2013. They’ll be reviewed by her St. Luke’s medical team and be transmitted to Seoul to be studied by specialists at the National Cancer Center’s Proton Therapy Center.

And then Becca and Nick will wait.