4 more weeks.

Victoria is well into her proton beam therapy and is doing well for the most part. She gets very tired and is dry in her throat and sinuses, which causes some pretty major nosebleeds, but those are really her only symptoms. She is not eating or drinking enough and has had to go in a few times for iv fluids, but we are all working on staying on top of our fluid intake.

Victoria is on track to have her last treatment on January 7th and we’ll finally be able to come home shortly after that. I know a lot of people are wondering what the end of her treatment indicates. Will she be cancer free? What is the goal of the proton beam therapy? Victoria’s radiation oncologist prefers to use the term tumor as opposed to cancer when talking about chordomas. Most chordoma cases seen in children are poorly differentiated chordomas, or PDC’s and, unfortunately, those don’t have great prognoses. Victoria does not have PDC. She has a conventional chordoma, meaning it is unlikely that her tumor will ever spread to other parts of her body, which is fantastic news.

We know there is some tumor left. Because of its size and proximity to the brain stem and the nerve that controls swallowing, there was no way to safely get a gross total resection. Victoria’s doctors looked at her case from every angle and did not see any benefit in taking on the risk of resecting more tumor over treating it with proton therapy.

The goal of the proton therapy is to stop any further growth of the tumor. Basically, it is trying to kill off every last cancer cell so that the tumor stays just how it is for the rest of Victoria’s life. As it is now, she has no decrease in the quality of her life, which is an absolute miracle considering how large the tumor was initially. She could suffer some hearing loss in her right ear, but that would be the extent of any damage.

Travis and I met with Victoria’s radiation oncologist yesterday and, after we looked at her images and the current plan, I came right out and asked the question, “so, do you think Victoria will live a long and happy life.” Her simple response of, “I do,” made every second of time our family has spent apart, all the hours of tears and worry, the travel back and forth, the overwhelming exhaustion, the thinning hair, and the new lines on our faces all worth it.

We can’t wait for our girl to ring that bell next month and to start living her life again (with the addition of hundreds of MRI’s and very close monitoring, of course!)