As mentioned in an earlier post Madi arrived home to Southern California on Tuesday July 22. Wooo hooo! Prior to leaving Boston, all imaging and scans required for the next leg of her journey were completed for the final 12 sessions of Proton radiation at MGH in Boston. The last round of proton radiation is scheduled to start August 25. Proton radiation is M-F, so another 3 weeks in Boston.
The proton radiation machine is basically a 3 story building. The walls, floor, and ceiling are solid concrete... 6 feet thick. The lid of the machine weighs 20 tons. If there is a technical anomaly and the unit must be shut down for repairs, it takes 12 hours to boot. A bit complex, yes. The benefits of proton radiation are particularly beneficial for stubborn tumors. If you picture a walnut being thicker in the center yet thin along the edges, traditional radiation would zap the whole area and surrounding tissue with equal intensity. Proton therapy is an amazing technology! It offers higher doses in the core a tumor, but a lower where the tumor is thinner. Along the edges, very little... just tickling the outside of a tumor. Another amazing aspect is that proton is 3D, meaning the radiation intensity bakes the tumor at it's core, but starts at the front of the tumor and stops at the rear. No residual radiation left, right, front, or rear.
Madi is getting what's referred to as 'pencil beam scanning proton radiation'... the holy grail and next generation of proton therapy per her radiation oncologist, also head of the Center. Proton radiation intensity is measured in Gy, commonly referred to as "gray". Madi is getting 50 Gye, pronounced 50 Gray. Giving the varying intensity given the exact shape of a tumor.. 50 shades of Gray. They should make a movie... catchy title. She'll get 22 more Gye later in the year, a sequel at least for her.
A reminder of the blessings and gifts throughout this journey:
Love,
The Jones'
The proton radiation machine is basically a 3 story building. The walls, floor, and ceiling are solid concrete... 6 feet thick. The lid of the machine weighs 20 tons. If there is a technical anomaly and the unit must be shut down for repairs, it takes 12 hours to boot. A bit complex, yes. The benefits of proton radiation are particularly beneficial for stubborn tumors. If you picture a walnut being thicker in the center yet thin along the edges, traditional radiation would zap the whole area and surrounding tissue with equal intensity. Proton therapy is an amazing technology! It offers higher doses in the core a tumor, but a lower where the tumor is thinner. Along the edges, very little... just tickling the outside of a tumor. Another amazing aspect is that proton is 3D, meaning the radiation intensity bakes the tumor at it's core, but starts at the front of the tumor and stops at the rear. No residual radiation left, right, front, or rear.
Madi is getting what's referred to as 'pencil beam scanning proton radiation'... the holy grail and next generation of proton therapy per her radiation oncologist, also head of the Center. Proton radiation intensity is measured in Gy, commonly referred to as "gray". Madi is getting 50 Gye, pronounced 50 Gray. Giving the varying intensity given the exact shape of a tumor.. 50 shades of Gray. They should make a movie... catchy title. She'll get 22 more Gye later in the year, a sequel at least for her.
A reminder of the blessings and gifts throughout this journey:
- Given the rarity of chordoma and even more rare variation that Madi has, Proton and chemotherapy adversely impacted the tumors much more than anticipated... there just isn't that much data. As such...
- The last two surgeries went much better than expected.
- All visible tumor was removed. Since they couldn't get clean margins with tissue given the involvement of the tumor remnants around the vertebral arteries, another 12 sessions of proton radiation are required to nuke any remaining chordoma cells.
- They did not need to split her jaw or any other equally invasive consideration to remove viable tumor.
- She did not need a tracheotomy (would have been 2 weeks of being muted... unable to speak)
- She will have more left-right and up-down head movement than predicted.
- All of you. We are truly blessed.
Love,
The Jones'
