Pippa Rea

Pippa's Journey with a Brain Tumour

Hospital Waiting Games

It just can’t be avoided and sometimes the waiting is just so painfully long.  This week the waiting around kept us so late I had to drive the majority of the way home in the dark.

After two and a half hours in the eye clinic waiting room we were told in a 2 minute consult the redness will go in a couple of weeks and there is now single vision straight ahead………Pippa and I had already figured out both those pieces of information on our own now that the soreness has eased and the weeping has subsided.  Really, the only person who can truly know how beneficial the surgery has been is Pippa. I can’t imagine what it was like for her to see double all the time and only she can decide whether the resulting single vision is enough for her to feel a bit more normal. Healing, time and the messages her very clever brain receives and interprets will let her know that.  At least once the redness has gone he eye will sit more central and look normal which in itself is rather important for a 10 year old girl.

Luckily I have an unwritten rule that we always combine hospital trips with something fun.  I try my hardest not to just make our trips about waiting rooms and appointments.  Last week it was dinner in Lygon St with cousins; this week it was a games night with Julie and yoga in the morning followed by breakfast with Pippa’s favourite puppies, Chip and Frenchie before heading to the hospital.  Thank goodness we came away from the games night with a new game to entertain us in the busy waiting room (aptly named “Too Many Monkeys”). I’m absolutely positive I won the most rounds………although after two and a half hours it all became a bit of a blur!

There was no chance of staying down again Thursday night – there was a very pressing reason to come back.  Today is Book Week dress up day at school.  Pippa had been planning for weeks and had an outfit that she had made with Nan ready for her to go dressed up as Agatha Christie’s “Miss Marple”.  I don’t think I’ve ever seen brown and tweed look so stylish!

 

 

 

 

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Back on Track

After a quiet, restful weekend Pippa’s back to school this morning. Wearing sunglasses, she’s opening her eye a little but she can’t judge her vision just yet because there is still a lot of scarring both in and on the surface of the eye.

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Eye surgery part 2

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.

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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.

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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……….

Thank you to Pippa’s weekly “brain therapists”………….

 

 

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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.

 

 

 

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