Over the past 17 months I have written some really difficult words so I can record, remember and communicate this journey James, Patrick and I have taken with Pippa. Somehow though, these last two posts have been the hardest for me to write. I am not writing pragmatically or clinically or even emotionally; I am simply numb watching my gorgeous Pippa struggle every minute of every day and I am exhausted hoping that the massive doses of steroids that she has been on for the past week can just keep the tumor at bay until the radiation therapy kicks into action. To me, these words are just mushed up babble on a page making no sense at all but we have virtually disappeared again and this is the easiest way for me to communicate.
Last Friday we returned from Noosa straight into a planning day and Tuesday was the day we were to begin reirrradiating Pippa’s tumour. I know we have been told there is nothing more that can be done for Pippa and 12 months ago I was told Pippa could not have more radiation but I had researched this as an option to improve Pippa’s current symptoms, delay her disease progression and prolong her life. This is not buying a cure, but buying time and we are hoping it will work. Too early or too late and the treatment doesn’t have a chance to work (albeit temporarily) against the tumour.
Pippa needed to tick many boxes to be considered for reirradiation and then we had to wait. I have been silently watching and waiting for weeks. The timing needed to be so precise and if it wasn’t there was no point attempting it. Both Pippa’s oncologists supported me and agreed she was a good candidate for the treatment but I was put through a lot of questioning from them to make sure I understood my (our – because I had discussed it with James, Patrick and Pippa) decision. How could we not try to buy our precious Pippa extra time here with us?
In addition to the time waiting for the tumour to become aggressive enough to be attacked, radiation therapy itself needs time to start to work. Firstly we had to make it from Friday to Tuesday. Pippa declined even more rapidly on Saturday and Tuesday seemed like a lifetime away. Tonight, after a 5th treatment this week we are waiting again. This wait is proving even more painful. James and Patrick have joined us in Melbourne earlier than planned. We can’t be apart just now. It’s the battle of tumour vs steroids and reirrradiation. Pippa needs the radiation to hurry up and join the fight though – its’ currently taking its time stepping up to the plate with a rather nonchalant attitude. Her little body is fatigued; walking, talking, eating and breathing exhausts her. She is on such high doses of steroids that they too are taking a toll on her – making her leg muscles ache and sometimes her stomach cramp.
Even with all this going on inside her body she is still our amazing Pippa – not one complaint and just the right amount of cheekiness.
One thing that put a big smile on our faces today was hearing Pippa’s CD for the first time. It’s strange hearing yourself but James, Patrick and I were all very impressed and I think a pretty good indication of how Pippa felt was that she sang along to her own voice and when it finished she said, “there’s two more songs I want to record”. I am very thankful for the opportunity that Pippa had to do this recording before we left for Paris. I can hear in some of the songs the strain the tumour was putting on her voice and breathing even then, but it is beautiful and another memory to have for each of us including Pippa. I wouldn’t change anything I have done in the way I have dealt with this and if given more time we will create more memories and have more fun. Even though Pippa can’t do much at the moment, just being with her every minute is fun and memorable. She is the most beautiful and wonderful person to have in our lives. She is the very centre of our little family and we love her so very much.
Pippa Rea 