Once you reach a 12 month milestone it then becomes ongoing – 12 months of……..12 months of diagnosis, 12 months of starting radiation, 12 months of ending radiation, 12 months of starting chemo cycles…….and so on. The more milestones that are reached and passed, the better.
For Pippa, the date she has continued to refer to and one that she will never forget is the date she underwent a risky and dangerous 6 hour craniotomy to obtain tissue from the tumour within her brainstem in order to reach a diagnosis to treat.
12 months was Friday 11th July.
What to do? A party? Of course Pippa the social butterfly wanted a party, but celebrating her head being cut open seemed a little bit odd. Instead, we came up with an idea to not celebrate, but recognise where Pippa is now compared to the same day 12 months ago. We decided that James and Patrick would come and watch Pippa do three fun activites that she now does on a weekly basis as part of her ongoing brain therapy. Therapies to keep her brain active, her cognitive function developing, stimulating her left/right brain, working her short and long term memory and to generally let the “lump” know that it certainly doesn’t belong! Doing them all on one day was actually quite tiring especially as it was during a chemo week. Regardless though, it was a perfect way to mark the date.
Twelve months ago Pippa went in for surgery relatively fit and healthy (she was a 9 year old who could walk and talk after all) emerging out 6 hours later with many of her gross motor functions diminished. A situation quite difficult and frightening for a 9 year old to comprehend. Most noticeably, she had lost the balance on her left side. Six weeks later her neurosurgeon was happy with her recovery but did advise me that the balance she still didn’t have may not fully return.
For the past 12 months music has formed a very important part in Pippa’s therapy and will continue to do so for years to come.
On Friday Pippa danced……….
She sang………
And she drummed………..
Each activity James and Patrick watched and they also tried. They spent a day in Pippa’s brain therapies.
At the end of the day the sun shone in the afternoon light and we flew kites together. Something liberating and free; beautiful and fun……….
Thank you to Pippa’s weekly “brain therapists”………….
Pippa Rea 