Waiting, Waiting, Waiting……..
Again I wait. This time because the post radiation scan cannot be used and needs to be regarded as a pseudo scan; the radiotherapy is still working in Pippa’s brain and thus the scans were distorted. Now we just wait longer for a time when the scan can be certain to be clear of radiation. After seven weeks of huge levels, this was not unexpected but Pippa looks and is so great it’s a bit disheartening and would have been just lovely to have something medically sound to validate her external signs.
This is what I have learnt recently:
- Sleep is important for every part (other than the golf ball in her brainstem) of Pippa’s body to stay healthy
- Really bad belly pain caused by nasty doses of chemo drugs is best dealt with heating one of Nan’s snuggle sacks and lying on the couch under a gorgeous, soft, snuggly aqua rug (by the way, yellow now seems to have overtaken aqua!)
- Nausea is most likely cured by cranking up Taylor Swift and singing (sometimes even dancing) your heart out – breathing and distraction!
- A vomit, if it’s going to come, should not to be confused with nausea and although it doesn’t happen often, when it does, grab the big purple bucket as quickly as possible. It will be fast and furious, but will no doubt end with a big smile 🙂
- It is what it is and there will be twists and turns; peaks and troughs. It will change the way I am but I can’t change it. Our journey is not a path already planned or plotted; we have no map to follow, no guide book and no directions. I am being led by Pippa’s oncologist and follow one step behind him. He is guided by Pippa. So far she is doing an incredible job of leading us through the maze.
I don’t look too far ahead. I stay in the present and deal with each day as it comes. I am there whenever and wherever my children need me. As a family I will take the opportunities that present themselves to create memories and experiences for us. I am used to doing things quickly, taking control and getting the job done. This is different. There was urgency before Pippa’s diagnosis. For now, I need to be calm and patient. I need to wait.
Pippa Rea 
You gorgeous, beautiful person – and mother. What a lucky girl Pippa is to have such an extraordinary mum to nurture her. I hope you know you are amazing. You won’t though – so I want you to know that I think you are amazing. And that you are where she gets her strength. Big hugs.
Virginia what an inspiration you are! You are so honest and so true to yourself.
I watch you, listen to you, read what you write and I am completely blown away.
I see you with your children, now ,and as in the past, I am filled with admiration and amazement at your skills.
The vicissitudes and contingencies that you have encountered are extreme and extraordinary.
I know why Pippa is the leader, I know why she is strong, decisive, determined and dealing with every curved ball with such grace and humour ,… she has THE best leader, teacher and role model as her mother.
xxxSusie
I pray for Pippa.
And I think of you all often xox
You are all always in my heart. xxx
Your words and actions are an inspiration to us all Pippa, James, Patrick and Virginia.
Love always, Sue, Soph and Jess xxx
Ginny
You are doing an amazing job. Our children are our life and we will do what it takes for them.
Stay strong and positive. You are all in my thoughts and prayers everyday.
Love to you all.
Goldie
xxxx
Virginia you are truly amazing, inspiring & strong! Had a quiet little chat with Pippa in the library at lunchtime yesterday. Great to see her smiling & she too has your amazing strength xo