Part 4 – In the search for the best cancer therapy option, “knowledge is power”

October 7th was fast approaching for Becca and Nick. That would be the day they would learn if their daughter’s spinal tumor had shrunk in size.

Since mid-June, 3-year-old Georgia had weathered round after round of chemotherapy at St. Luke’s Medical Center in the Philippines. She had endured experimental gene therapy injected directly into her tumor and intravenously. The side effects were miserable.

Georgia’s continued treatment was reaching a fork in the road. Radiation therapy needed to be pursued. But which kind? Photon beams or proton beams?

“…It makes my stomach tighten just thinking about it all as the next step is radiotherapy,” Becca wrote in mid-September on her blog, The Helping Georgia Fund. “But we don’t know what kind and we don’t know where. What I do know is that G’s time just to be a little girl playing at home will be over as she faces the next stage of this journey.”

A few week later, Georgia lay within the MRI scanner. Becca shared the news with her family and friends. “This afternoon we had a text from our doctor saying ‘the reduction in the size of the tumor is remarkable – the radiologists weren’t able to measure it though because the margins are ill-defined.

“The big tumor in front of the spine is almost gone. What’s left are the small parts in-between the spine and some at the back.’ We knew from the scans when G was having the P53 injections that the tumor had shrunk a little each time but to have it confirmed is the best feeling. BUT I am also very cautious and wary of getting too over excited as she still has the tumor in places which are very difficult to reach.

“Our team still think that radiosurgery is the next phase of her treatment, and we know we still have a long way to go, but it is good, good news.

“When I really think about the impact of these words I just feel overcome and want to cry but at the same time we have to keep it together and focus on the next step.

“…I guess anyone who has been on this cancer journey never gets the luxury of fully relaxing their guard ever again, but believe me you do value and appreciate the good times and reading that text today was a good moment and we need to cherish it.”

Days later, Becca continued sharing her thoughts to family and friends: “We understand that doctors have different opinions but at the end of the day we need to know what the safest option for G is and also that the treatment has been done before.

“Our surgeon is very confident about doing SRS but she has never actually done it on a spinal pediatric patient before, only on the brain. As parents we have to look for the person with the most expertise in this area.

“To have two conflicting opinions is just confusing so we will obviously wait and seek more opinions. At this stage we are just thankful that we also have a team in London and Germany looking at G’s case.

“Our radiologist also mentioned that she had spoken to a doctor at Makati Medical (a hospital in Makati City about 10 minutes drive away) and they have something called Tomotherapy which is a CT scan machine capable of giving radiation and that they have used it successfully on spinal tumor patients. She did not know any more details so we are hopefully going to have a consultation with this doctor on Friday so that we can find out more and whether he has done it on pediatric patients.

“Yesterday we spoke to the radiation oncologist at St. Luke’s and she said that after looking at G’s latest MRI scan she still thought that IMRT – Intensity Modulated Radiation Therapy — was the way to go. This would involve 31 fractionated doses of conformal radiation over a period of six weeks. This would involve G being sedated 31 times, but she felt that because of the tumor being so near to the spinal chord and all her vital organs that this was the safest option.

“Later last night we spoke to her surgeon and she said that she felt that SRS – Stereotactic Radiosurgery was still an option. This is one high dose of radiation to the tumor. Her opinion was that the tumor has shrunk enough for her to be able to do this.

“We pointed out that she had the opposite opinion from the radiologist and her response was still that she felt SRS was the way to go and that it would not involve having to put G to sleep 31 times!

“Hmm, it has all left Nick and I feeling rather confused. Our doctor has said that she will go back to the radiologist and surgeon and ask all of the SRS team for their general consensus on what they think is the best option.”