After nearly six weeks of waiting, speaking with doctors, and sifting through information, a treatment plan for Lucy’s craniopharyngioma recurrence has clearly emerged.
She will go to Jacksonville Florida, one of four places in the US where proton radiation treatment is available. This is not an experimental procedure, and has been used for pediatric cancer with great success for several years. The short and long term risks and side effects both cognitively and otherwise are greatly reduced from traditional (photon) radiation. The treatment is precisely targeted and controlled so that very little healthy brain tissue is exposed, and it is fractionated, which means that the amount of radiation is broken up into 28 doses over so many days. It usually takes less than 5 minutes per session, but because of her age she will be sedated, which will increase the time some.
September 28th we have a few days of preliminary procedures and paperwork. October 12th we return to start the actual radiation, which will continue five days a week for 6 weeks. I will have Garrick with us in Florida, while Richard and Jack will remain at Grady and E Rivers. The weekends are free, so we are hoping for some fun beach time together and maybe a few trips back to Atlanta.
We have talked with her about it, and she is not worried or afraid, just dreading the IV. Jack is nervous about me leaving, but both are optimistic and determined to meet this next challenge with courage.
We will keep you updated here, and continue to rely on your support and prayers,