Pippa Rea

Pippa's Journey with a Brain Tumour

Steroids

on November 28, 2014

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.


9 responses to “Steroids

  1. Alison Wilson says:

    Thanks for the update. It’s great to hear Pippa has somewhat stabilised. I hope The Challenge Christmas party is enjoyable and Pippa has fun going on the rides!! Maybe you could go on some fun rides yourself Virginia!!

  2. Prue Albert says:

    Our thoughts & prayers are with gorgeous little pippa, you and your boys.
    At school assembly today pippa was mentioned & too keep praying .
    With love
    Ruby Albert , her sisters & her mum. Xxx

  3. Carolyn says:

    Hope the sun shines and you have all the rides you can stomach tomorrow Pip! We will Be thinking about you having a ball tomorrow!! Brilliant! Loads of love and fairy floss, carolyn, Jobe, coen and your special cuddle bug, yarra!

  4. Catherine shaw says:

    Have a great day today guys! Pippa really is tough & brave….I’m far too scared to go on rides!! Thank you for the updates, Thinking of you all the time
    Xoxoxoxo

  5. Miss Ryan says:

    Pippa’s teacher would not want to swap her visit yesterday at the RCH for any other day earlier in Pippa’s journey. She had the most wonderful experience with the best tour guides around – James, Patrick and of course, Pippa.

    It was such an honor for her to spend this time alone with your three admirable and inspiring children…. She couldn’t have possibly imagined what an amazing time she was going to have and could not imagine it being any other way.

    With love and gratitude,
    Natalie

  6. Diane says:

    All I can say is hang in there. Love as always

  7. Goldie says:

    What very special and amazing children you have Ginny. Although no one needs to tell you that. As a teacher myself I would feel very privileged to be invited for such a special tour. Love to you all darling.xxxxx

  8. Joy says:

    Hope you have an awesome day Pippa! Enjoy those rides. So glad you got to show Miss Ryan around!! 😃 xx

  9. boothkids says:

    Hi Pippa, we had SO much fun with you all at that great water park in Turkey – hope you have a fabulous day and go on lots and lots of crazy rides!!! Tom wants to let you know he has at long last managed to find a slingshot in Spain, just like the ones you bought. Lots and lots of love to you all xxxxx

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