After an huge day in recovery we eventually made it to a ward bed and Pippa has now settled comfortably and pain free. Her little chemo body just needed a bit longer than normal to get through all the surgery medication.
Eye surgery
Pippa has come out of surgery but is in a lot of discomfort and pain. From a surgical perspective it went well however until she can open her eye I don’t know if it has resulted in single vision.
Her loving brothers were there for her when she went in and came out of surgery.
Pippa has spent a long time in recovery and we were all a little surprised at her level of discomfort and pain so after a few hours the decision was made to keep Pippa in overnight.
I was not expecting this at all and it’s not normally a requirement. A big thank you to our driver Adriano (Risotto Man to Pippa) who not only picked up James as planned and took him to meet friends at the 4wd exhibition but then came back for Patrick to take him there as well so they can both get a ride home tonight.
I’m sure Pippa will be feeling much better tomorrow.
There’s a Monkey in Pippa’s Chair!
Recently Pippa’s teacher and I were searching for resources to assist not only Pippa and her teacher, but also her class and school community when necessary. Among other information and support, we came across a program called Monkey in My Chair. A phone call to the organisation Missing School resulted in a connection to the Cure Starts Now who manage and distribute the Monkeys in Australia.
Pippa’s Monkey (aptly named, Monkey) arrived yesterday complete with his back pack full of extra information and ideas, a picture story book to explain his purpose and a “Monkey Junior” to stay at home and go to hospital with Pippa. We thought before rushing into things it would be best to make sure that Pippa and Monkey got along. His arrival was perfectly timed to test out his dancing skills………..
Getting along so far……..
Hanging around on the bar watching…….
After passing that with flying (dancing) colours there was no doubt that he would easily slot into class so off he went to school today for his introduction to the rest of D4 and his first day at school.
The introduction
Reading the story about Monkey
Apparently, Monkey likes to sit very still in class, is a great listener and his long arms and legs are perfect for giving hugs.
Monkey will get straight to work and sit in Pippa’s chair while she is away Thursday to watch Patrick and his St Joseph’s team mates play in the State Football finals and then again on Friday when Pippa is in hospital for some surgery on her eye to tighten and loosen the muscles. The aim of the eye surgery is to hopefully give her some single vision (instead of always seeing double) by tightening and loosening the eye muscles.
Lets hope Monkey doesn’t monkey around in her chair while she’s away and get up to mischief!
Pippa’s Milestone
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……….
No better kite than a yellow smiley face
James can do it with no hands!
Thank you to Pippa’s weekly “brain therapists”………….
Gorgeous Miss Mel
Angelic Elana
Rockstar Talin
Barry’s a Rockstar too!
12 Months with a Lump
Yesterday was 12 months since an aggressive, inoperable lump was found growing inside Pippa’s brainstem. The ball started rolling and the domino started falling; fast……..
12 months later and I cannot believe the journey we are on is real.
People say to me, “I can’t imagine what you are going through.” My answer is always the same, “Neither can I.”
It is not something you can ever imagine. It is not something you can ever comprehend. It is what it is and you simply do the best you can. You enter a state of just being. Your perspective on everything changes. You become calmer yet you are more on edge. You learn patience yet you worry incessantly. You live each day in the day and for the day taking the day as it comes and dealing with it then not knowing or thinking about what lies ahead.
12 months on and these are some things I have come to know………..
I know our oncologist is one of the best in the world at what he does and I am indebted to him for his persistence and doggedness 12 months ago
I know we have come a long way
I know we have achieved amazing feats
I know we have a long uncharted road still ahead of us
I know that statistics are irrelevant
I know radiation and chemotherapy are horrible but necessary to help fight the fight
I know I will never get used to handing over chemotherapy drugs to my daughter
I know that love is abundant and you can never be full of love nor can you ever run out of love to give
I know that a little sister can be her brothers’ best friend
Most importantly, I know that Pippa has the most amazing constitution, inner strength and wisdom beyond her years. Her attitude to life, is infectious and her whole approach to the past 12 months is inspiring.
Winter Blues
A friend of mine once told me she thought the “Winter Blues” were just a myth until she met me.
I’m not a cold weather person. I don’t like layers of clothes; I am much happier in shorts and a t-shirt with the sun shining warm on my skin.
This week has seen Pippa complete her 8th cycle of chemotherapy. She only had one uncomfortable night on day 2 but we managed that with some stomach cramping medication and our normal chemo routine of massage, healthy food, baths and of course, cuddles from not only me but James and Patrick as well.
I was perhaps exaggerating how cold I was during the southern WA cold spell a couple of weeks ago – I’m now feeling that was warmish……. This week Victoria has seen the weather change to real winter weather and along with it (and during the chemo cycle) came a cough for Pippa. It started small and only at night time. It wasn’t bothering her much but listening to it I knew it was going to become nasty. I watched and waited. On Monday it turned and she couldn’t stop coughing. I knew that based on the last cough she would end up in hospital but wasn’t sure whether I was supposed to wait for that to happen or if there was something I could actually do.
Yet again I rang the Royal Children’s Hospital Oncology department for help and advice and then off we went to visit the GP. My suspicions were confirmed and the GP gave us some antibiotics in the hope that we were just enough ahead of the infection to help her compromised immune system fight it before it got the better of her.
The first night on anti biotics I spent popping ice into her mouth so she could sleep. The second night I gave her strong pain relief which also acts as a cough suppressant because she has pulled all her stomach muscles from coughing. So far the anti biotics have supported her and her immune system is holding up instead of shutting down. She’s happy enough within herself but she can’t go to school. We still went to dancing yesterday which in itself was good medicine – some lovely light movement to some beautiful music that of course brought an emotional mix of tears, smiles and laughs (to everyone but Pippa, she’s just the smiles and laughs part).
Fingers crossed Pippa and her immune system can hang on and win this mini fight………
This is going to be the longest bout of the “Winter Blues” I have ever had. Summer with its warming, happy sunshine can’t come quickly enough as far as I’m concerned.
Pippa Rea 