Pippa Rea

Pippa's Journey with a Brain Tumour

Jul 14

Pippa’s Milestone

by Virginia Rea

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!

 

 

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Jun 27

12 Months with a Lump

by Virginia Rea

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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Jun 18

Winter Blues

by Virginia Rea

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.

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May 24

3 Weeks of Being a Normal 10 Year Old

by Virginia Rea

Pippa has just completed her 7th cycle of full strength chemotherapy (after having also had the 42 days straight of low dose in conjunction with radiation).  7th of I’m not really quite sure how many.

Between the last cycles Pippa had 3 weeks of being a normal 10 year old with no trips to hospital either planned or unplanned in between cycles and no pains or discomfort.  She enjoyed the holidays, went to school, had plays and sleep overs with friends  and  made the most of everyday life.  All with what seems like an almost complete smile across her face.

So normal were we that when we were due to go to Melbourne to the hospital ready to start the most recent cycle we both had trouble leaving.  I seemed to wander around the house aimlessly for 2 hours!  It was a beautiful sunny Sunday; Mothers Day in fact,  and Pippa was playing James & Patrick.  She came to me to say she didn’t want to drive to Melbourne and leave James and Patrick again.  At the same point I found myself ironing James’ school tie (what??!!).  We hugged.  The stalling for 2 hours was just a feeble attempt at trying to put off the inevitable and not reenter the life we’d been able to ignore for the past 3 weeks (sort of).

Of course we made the trip down the highway.  This time Pippa read her book out loud for 2 of the 3 hours.  We went to the hospital on Monday, all was good, collected the medication and came home that night to start the chemo routine again.  Like last time Pippa breezed through the week of treatment with no side affects.

Bowling with Laura
Sleepover Fun with Phoebe
Afternoon Tea with Nibbles
A feed of chocolate before going without during treatment!

 

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Apr 26

A Happy Easter

by Virginia Rea

The week before Easter was the second time Pippa has successfully made her 4 week chemo cycle.  The continual adjustment to her medication seems to be right for the time being  meaning her blood and her body’s processing of the toxicity of the drugs is finally as it should be.  Whilst I still live day to day, for the first time in 10 months, whilst I can’t plan, I can at least think a little further ahead.

I didn’t think this girl could amaze me any more, yet last week she did it again.  We were juggling treatment with school holidays, visitors and Easter.  After another very long day at the hospital on the Monday we came home prepared for the gripping, horrible pain that seems to be the normal first 48 hours of treatment.  Nothing!  Not even a hint of pain! By Wednesday I asked her if maybe she thought there was a mistake and the capsules were perhaps empty and the syringe just filled with water???  She shot me a look and asked, “Do you want to taste this disgusting stuff?”  No thanks!

Thus, we had a great school holidays and lots of fun with all our visitors.

This Easter was also our first Good Friday Appeal as a patient and a family of the Royal Children’s Hospital.  That was hard for me.  Every time I turned on the TV or opened the paper it was there.  It’s hard enough living your own struggle without being constantly reminded.  We put coins in the collection tins at all the traffic lights we drove through, Pippa and the boys went out to the street when the SES vehicle drove by and gave them a stash of money, but I didn’t want to hear or see anything.

The Royal Children’s Hospital is amazing; the staff, nurses, doctors, specialists and volunteers are incredible.  I wish the only way I knew that was from seeing the Good Friday Appeal on television.  Instead I can’t walk through the foyer of that beautiful building without seeing someone I know.

In July last year I kissed my precious daughter goodbye and let her go in for massive and dangerous brain surgery and I have now entrusted her medical future to her oncologist.  I know first hand the stories of that hospital and I am grateful every day for the skills and knowledge of the people at RCH who now form part of our daily lives.

In Pippa’s words, the best thing in the world would be that no child ever had to go to the Royal Children’s Hospital and that every child could live a normal life.  Unfortunately, that’s not going to happen, but at least we are so very lucky to have the Royal Children’s Hospital and all that it does for children.

Pippa and Zoe were good at going round in circles!
Chloe and Nibbles
Stacks On Beth!
There’s a koala in the tree and a leopard on Pippa’s coat!
Toasting Marshmallows

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Mar 27

9 months in

by Virginia Rea

Yesterday was 9 months since a lump the size of a golf ball was found inside Pippa’s brainstem.  Our options have been nothing other than to kill it and Pippa’s doctors have attacked the tumour as aggressively as it attacked her.

The anticipation, anxiety, trepidation, stress and worry leading up to an MRI scan is unbearable.  Not knowing what is going on inside, but knowing that soon you will be updated rips you apart in every direction.  Holding all that together on the outside is exhausting.

Yesterday evening Pippa’s oncologist rang me.  He was sitting in front of Pippa’s scan from the day before and could easily see a shrinkage in its size.  Death to tumour is our ultimate goal; shrinkage to tumour is an unexpected bonus!

We have a very happy little family in our house at the moment but we all know there is still a long path ahead of us.  And just to remind us poor Pippa has spent the night with another sore tummy and then provided a slight interruption to writing this blog this morning for a vomit.

For the time being I feel that we are one step ahead of the tumour and I can’t wait to see the pics for myself next week.

 

 

 

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