NED
We are elated and very relieved. Rory is NED (no evidence of disease). The CT of his head, neck and chest were clear of cancer. Once he completes chemotherapy this week he will officially be in remission. This does not mean he is cured. There is no way for the doctors to know all the cancer cells in his body are gone. However, it is the best possible outcome which could be achieved upon completion of the treatment protocol for osteosarcoma. It means we can return home to recover and tentatively rebuild our lives. Rory will be monitored closely for the next five years to detect any recurrence of cancer. I will remain hyper-vigilant.
Dr Nick, the ENT Surgeon, is also happy. He said Rory recovered from the surgery to remove the tumor and reconstruct his left jaw bone incredibly well. Rory can eat, speak and has reasonable functionality of the left side of his face. A decision was made, in Rory’s best interest, when he had surgery not to wire his mouth shut. This would have required a tracheostomy to assist with breathing, an NG tube for nutrition and would have lengthened his recovery time delaying chemotherapy. As a result there is anormal alignment of his top and bottom jaw. It is called malocclusion. Also Rory has no joint at the top of his left jaw, it is sutured in place and there has been some movement. Dr Nick will review the reconstruction in two years, provided Rory remains NED. At that point we may decide to proceed with further surgery to improve the functionality of Rory’s jaw.
Today is Day 4. Rory is again battling major fluid retention overnight and receiving furosemide twice a day to wring out the excess water. The past couple of nights he went over five hours without a pee and had received 1700mls during that time. The nurse has had to wake the adult on duty to get him to go. Nurse Tracey has continued to provide great support. Teacher Jan has called in for a chat most days.
Thank you to the Brimelows for the massage vouchers. Sean and I will put them to good use ironing out the kinks from the hospital pull down beds and releasing some stress.