Today Pippa’s oncologist feels she has plateaued and is perhaps stable – I’ll take that. Tomorrow instead of having an extra day of treatment he has told her she can go on whichever rides she likes at the Challenge Christmas Party! When I queried him about the head spining, jolting rides she will undoubtably seek out he shrugged his shoulders and said, “Who cares, maybe she shouldn’t but let’s just let her have fun.” He’s right, she’s been to the edge, a fun ride can’t do any worse than that. Pippa’s in bed nice and early and is looking forward to it. The poor little darling is so tired each day.
Today we had invited Pippa’s teacher to come and see her so she could show her around the Royal Children’s Hospital. This was something that Pippa herself had suggested a while ago but it never eventuated as our treatment and visits ended before we could arrange it. Thus, we decided to do it this time around. In hindsight it would have been a wonderful visit to do much earlier in our journey. As Pippa said, “then she knows where I am and what I’m doing when I’m away from school”.
Yesterday I needed to fill another script of steroids for Pippa which I did whilst she was on the radiation table at Peter Mac. When I was called to collect the script the hospital pharmacist asked to speak with me. He was quite concerned about the high dose of medication and knew it had been for a prolonged time based on how recently I had filled the previous script. He was checking that I understood how to take the medication, that I was counteracting some of the side affects with other medication and wanted to know how long I had been on that high a dose and if I knew how much longer it would be required. He was being very thorough but also very kind. I reassured him that I understood everything and that yes, we were having occasional issues but I was essentially managing everything as best I could with appropriate medications. He was comfortable with that. It was not until the end of our discussion when I corrected him that my script was not for me but my rather petite 10 year old daughter. He was speechless. We shared a look of sadness and I quietly left clutching on tightly to the bottle in my hand with tears welling up in my eyes.
Pippa has been on this dose of steroids for 2 weeks now. It is almost twice as much as the highest dose she was on last year and that was only for (I think from memory) about 5-7 days at the peak of being on steroids for approximately 5-6weeks. Dexamethasone reduces the swelling around the tumour so the radiation can have a chance at working. Neither of her oncologists is ready to risk taking her down from this dose just yet.
Pippa Rea 