26h June 2013. Today is 18 months on. Today is one day after Christmas Day. Today is the second Christmas we have made it through. Today is further than doctors had first hoped for 18 months ago. Today Pippa is still here with us.
I’ve collapsed many times in the past 18 months. The first was the first time I was told to be prepared for not much longer than 6 months. The second was the second time I was told to be prepared for not much longer than 6 months. Then there was 1st September when I was told there was nothing more that could be done or tried. There have been times I have been told to prepare myself for the worst in the coming hours and days. I’m not sure what number collapses they have been. For three weeks in a row I crossed my fingers and my heart each day willing us to make it a few more days. My heart is almost permanently collapsed.
Pippa is still here. She ruled the monopoly board again this evening. One day at a time and Pippa is still here. Christmas Day, of course, was a milestone. The next milestone is Pippa’s 11th birthday, but that’s a little way off yet. One day at a time.
Thank you to many many people across the past 18 months……….
Thank you to every single person who contributed to fundraising that occurred in September 2013 helping us live Pippa’s number one dream of visiting the Eiffel Tower in Paris. I made a promise to take her there one day sitting on the floor of the corridor waiting for one of many blood tests. I will never forget that heartbreaking conversation.
Thank you to everyone who has sent a single thought in our direction. Thank you to my many friends near and far, all of their friends and to new people and friends I have met along this journey. Thank you to those across the world who read this blog and think of us. Thank you to friends who drop by, ring, text and message. It all helps keep me standing. Thank you to anyone who has ever put themselves forward to spend some time with or do something for my boys. They are lucky to have so many good men around them who care about their wellbeing. Thank you to all of James, Patrick and Pippas’ friends. Thank you to their school. communities. Thank you to our family.
Thank you to James and Patrick for being the best brothers in the world, giving the best hugs, the best kisses and the strongest support.
Thank you to some of the funds and foundations that have helped catch my tears either down the phone or in person…….
Royal Children’s Hospital Children’s Cancer Centre
Thank you to the doctors, surgeons, therapists, nurses, and hospital staff who have walked beside us and continue to do so. Thank you to Pippa’s oncologists at RCH and Peter Mac who have done the very best job they could, offered the very best treatment to a virtually untreatable disease and agreed wholeheartedly to do the further unproven treatment when I asked.
Thank you to Pippa who in the past couple of days has shed little tears with me behind the joyous front of Christmas. Thank you for being strong and fighting so hard without ever complaining. Not even once. Thank you for sharing Christmas 2014 with us. Your Presence is our Present. I know you are starting to get saddened by the differences that have taken over your body recently. I am still hoping this extra radiation is working and know that it ,combined with your strength and determination, is the reason we made it to Christmas yesterday. As we reduce the steroids your muscles will grow a little bit stronger for a little bit longer and we can spend more time together. Christmas is over now. Let’s start planning your birthday party. It’s not that far away, February 13th, we’d better start getting ourselves organised so we can look forward to it.
How exactly did we spend today, 18 months after I first heard the words Pontine Glioma? With family of course……A few of the Reas gathered for a family reunion. No better place to be today.
Some of the Rea Clan
just a few of us Reas……
Pippa Rea 