Becca and Nick eagerly awaited word from specialists at a London hospital.

“On October 10, Becca returned to writing in her blog, The Helping Georgia Fund: “I can research until the cows come home but we need experts who have done this procedure to tell us the options and give advice. We need someone to say I have done this before on a Ewing’s sarcoma spinal pediatric patient and this is what I advise. We are therefore really pinning our hopes on getting this information from the UK.”

Days later and still no word from London, Becca wrote: “This is the hard thing, constantly waking up and checking email to see if we have heard anything. It is the first thing we think about in the morning and of course the last thing we think about at night.

Nick rang the Proton Center in Seoul via a number in the US but it was an answer machine, we have had a general message back from them telling us all about Proton but not actually mentioning if they do pediatrics.”

On October 15, Becca reported: After many sleepless nights Nick and I had an email on Sunday from the UK … and this is what the email said…

“The opinion is the following:

1. At the moment (and most likely in the future) surgery is not a viable option. Although surgery can remove the tumor, this would render Georgia paralyzed, incontinent, and she would have to have an ileostomy bag. Definitely not a right option.

2. Radiotherapy — conventional radiotherapy difficult, but protons might be an option. Having said that, protons are as effective as conventional radiotherapy (external beam or IMRT or RapidArc), not more effective.

We believe it might have less side effects to the healthy tissues, but in Georgia’s case we would have to irradiate the bones of the pelvis and the heads of the femurs, so damage would be done anyway.

3. The conclusion of the [UK cancer specialists] was to obtain some more images after further chemotherapy….”

The email also went on to ask if we would like G’s case sent to the radiation oncologist at the Jacksonville Florida Proton Therapy Center in the USA. This is where the UK send all their NHS patients to. And it has an excellent reputation for working with pediatric patients.

We have asked the UK team about the option of Tomotherapy which is available here but are still waiting for a response on that.

Nick and I have also found a Proton Therapy Center in Seoul, South Korea that is a third of the price of the USA. However, we are still in the process of finding out if they take pediatric patients. Nick and I lived in Seoul for four years before moving here, so we know how good the medical system is in S. Korea.

We have also asked for more explanation on the above email. From what we understand Proton and IMRT or Tomotherapy are all equally effective as a means of radiation so what we are concerned about is which is the safest option or is there no difference?

From what we have read and understood there is no exit dose with Proton so from a lay man’s perspective that seems to be a slightly safer option.

“…At the moment these are our options as we see them …”

Wait to hear back from UK as to what they think regarding Tomotherapy and whether it is a viable option (as it is available here at Makati Med).

Wait to hear back from the UK for further explanation – are they saying Proton is the safest or are they saying because there will be radiation into her bones whether we do Proton or IMRT/Tomotherapy makes no difference.

Send all of G’s records to Jacksonville Proton Therapy Center in the USA.

Send all of G’s records to NCC Proton Center in Seoul, South Korea (but first we need to have confirmation that they do pediatric patients).

Meet with our team at St. Luke’s to have our immediate questions answered.”