Pippa Rea

Pippa's Journey with a Brain Tumour

Tumor vs Reirradiation and Steroids

on November 22, 2014

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.

 


26 responses to “Tumor vs Reirradiation and Steroids

  1. Cara Chisholm says:

    You are such amazing people. Sending so much love to you all. Xxxx

  2. E says:

    No words from me will bring you comfort, but Love, hugs and prayers are still coming your way, as always. I admire your strength, your wisdom and the love you have for you children Virginia. May God bless you all xox

  3. Rachelle says:

    Just letting you all know that we are thinking of you.
    Much love.
    Rach, Alex, Luka and Carys

  4. jo bishop says:

    Praying for sweet Pippa and for all of you xxx

  5. Rasheedah Duval says:

    May God bless your sweet angel; the strength you’ve all shown has already brought her an endless lifetime; God hears all children I’ll make certain my boys (1 a DIPG warrior) ask the lord to grant Pippa strength, health, and prosperity…she’s beautiful

  6. Carolyn says:

    Darling Virg, we hope the radiation approach kicks in – in a huge way – very soon. Pippa’s approach throughout all her treatment has been simply incredible. She is amazing, you are all amazing! We think of you all, so often and I know there are so many others in the background, sending you all constant love, support also. If there is anything more tangeible I can do, please let me know. With much love, Carolyn, Joby, Coen and Yarra xxxx

  7. Catherine shaw says:

    Virginia, James and Patrick,, Keep fighting hard, you have everyone’s support, wrap your arms around that little girl of yours and love her hard! Xx

    Darling Pippa , you are doing an amazing job, you are SO loved and we are all SO proud of you xx

    Sending you all lots of love Catherine Matthew Flynn lila and lottie xxxxxxxxxxxxxxxx

  8. You are all so very much in our hearts and thoughts. What an amazing family. All our love, Sam, Tom and Luke xxx

  9. Narelle Hill says:

    Dear Virginia, James and Pippa. Sending you strength and love. You are all amazing!
    Keep fighting brave Pippa! Xx

  10. Dear Ginny, much love and positive vibes for you Pippa and the boys. What a beautiful courageous family. Deb , Gary and family xxx

  11. Jacquie says:

    You are all truly amazing! All our love, prayers, thoughts and any strength we can send to you is yours!!! Biggest hugs to you all!!!!!!

  12. Jackie says:

    Beautiful family, my thoughts are with you always and your gorgeous Pippa! Sending lots of positive vibes and lots of love xx

  13. Cathy says:

    Lots and lots of love and hugs to you all. You , Pippa, Virginia, James and Patrick are such special and amazing people. Cathy xxoo

  14. Carolyn Fleming and Gordon Szegi says:

    You are ALL very brave and strong. We feel very priviliged to be sharing your journey ,the wonderful memories and great fun you have.. Keep the cheekiness up Pippa . Love and hugs to you all. Carolyn n co

  15. leanne.mugavin@raywhite.com says:

    Pippa and the boys are so blessed to have you for a mum Virginia.
    Love and prays to you.
    Leanne & Noel xx

  16. Diane Mugavin says:

    Thank you for the update, know that Ray and I are thinking of you all. Diane xxx

  17. Mandy Ross Paris and Austyn Maglaras says:

    The courage, strength, determination and grace of Pippa is credit to you all, such a beautiful family full of love and support. Our positive thoughts and prayers are with you all. God Bless xxx

  18. Cleta says:

    Just wanted to send all our love and let you know we are thinking of you.💋💋💋💋

  19. Joy Mitchell says:

    Thank you for the updates. You are an incredible Mum Virginia! What a great job you are doing of getting the absolute best for your family. Sending love and hugs to you Virginia, James, Patrick and Pippa as you continue your journey. Joy xxoo

  20. You are constantly in our thoughts, what a remarkable family you all are. We feel privileged to be part of your journey. Virginia, you are such a ‘special’ mum, a credit to all of your family Sending you lots of love, hugs and ooodles of kisses, with an extra special hug for Pippa. Kathy and
    Tony Lochead (uk). XXXXXXX (for pippa)

  21. kerri bilson says:

    Thank you for the updates Virginia. You are an amazing little family. Our thoughts are with you all.
    Kerri, Jas, Nicola, Ruby and Halle xxx

  22. Jacinta, Craig and family says:

    Every night at dinner for the last 18 months Will has said a special prayer for Pippa. Mine has been for you. As a mother, it is to give you continued strength. You are so strong, brave and loving and I have no doubt that the courage Pippa is and has shown throughout this journey is in no small part due to you. We think of you everyday.

    Jacinta, Craig, Alysha, Shaylea, William, and Patrick

  23. Christine Harris says:

    There are no words. Love and prays

  24. Joel says:

    Thoughts and prayers are with you all. Keep fighting. Sending you all our strength.

  25. Goldie says:

    Sending all my love and strength.xxxxxxxxxxxxxxxxxxx

  26. Nicola says:

    You are constantly on our minds and in our hearts. Sending much love and prayers your way.
    N&B xxxx

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