Pippa Rea

Pippa's Journey with a Brain Tumour

Finishing up and leaving Melbourne

If only the internet connection and phone service problems I have had since returning home this week were the only things on my mind leading up to Christmas……..

We completed Pippa’s reirradiation last  Friday instead of Tuesday – 15 instead of 17 days of treatment.  Her body was tired from the steroids, the treatment and the tumour.  Fifteen treatments earlier we were greeted at Peter Macallum Cancer Centre by friends from a year ago with smiles on their faces and tears in their eyes.  On Friday we completed our final day and said our goodbyes again to those same friends with the same smiles and the same tears.  Now we start reducing Pippa’s steroid dose.  Our Peter Mac friends……

Deciding when to actually return home proved rather tricky.  Thus, we asked Pippa about things that were important to her and she wrote a list on her iPad.  She wanted to spend a day playing games with Julie, Harry and Charlie and then she wanted to go to the zoo but just with James, Patrick and me.  Pippa wanted to return home and go to school and see her friends but she also wanted to go to “Liz’s Christmas Party” on Saturday evening.  With all this in mind, we stayed in Melbourne until Sunday and returned home with the car full on Sunday evening.

“Liz’s Christmas Party” was the RCD Fund Very Merry Christmas Market Party.  Pippa was insistent that we attend and she even made sure that she slept before and after the zoo so that she wouldn’t be too tired to go.  Pippa feels a very special bond with Liz and Celia.  James and Patrick were slightly less enthusiastic to attend, but they all agreed that the best way to go to a party of people you don’t really know was to “Do a Tony” – smile, be happy and talk to lots of people you have never met before.  To try and say that we were all glad we went does not truly reflect how the evening was for us and I really don’t know if, in this case, I can put it into words.  We knew Liz and Celia of course, and had met Scott that week when he collected 400 shortbreads from our apartment that my mum had made for the market. Pippa and I had previously met Connor’s bother and sister, Nick and Hannah, once before and of course we both love her beautiful music therapist, Sarah, and Yoga therapist, Patricia.  Nothing though had really prepared us for the warmth and love that greeted us; the welcome we received from people who knew of us but didn’t know us.  We were taken literally into the embrace and hearts of strangers who made us feel like friends.  Pippa was (in James and Patrick’s words) made to feel like the VIP of the party – Very Important Pippa!   James, Patrick and Pippa participated by drawing all the raffles which was a very tricky task considering they were actually willing Pippa to draw out their own name!  They all felt happy and included.  It was an extraordinarily humbling and beautiful evening.

 

 

 

 

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Minute by Minute, Day by Day

Today we entered the 8th day of  reirradiation.  I no longer profess to evaluate whether or not it has started to work as last Thursday I thought that her walking looked better but then on Friday I was hit with a tonne of bricks.  Pippa wakes in the morning, smiles and looks at me with her big, beautiful eyes……that is enough.  That in itself means we have another day and another day means time for the treatment to work.

We have a lovely, tranquil and peaceful apartment in which to spend each day; perfect for just existing.  I’m sure it’s the relaxing view both day and night that has contributed to me finally heeding Pippa’s oncologist’s advice of, “try not to worry about things that are out of your control.”  For the past 17 months it’s been easier said than done but right now I know I am doing precisely everything I can and if I didn’t try this I would regret it forever.  The hardest thing is that Pippa had to get to the very edge to let the treatment try and work.  Right now, there is simply nothing more I can do.

Pippa rests, sleeps, does drawings and plays games.  Monopoly though,  has been sent home because no one else ever wins!  Instead, we have kept Tony’s beloved vintage (we’d better not call it antique) Chinese Checkers Board and of course we still have all of our favourite “Julie” games including Greed and Rat-a-tat-Cat.  Sunday we went for a “roll” in the sunshine along the waterfront market – it was lovely but tiring.  The warm weekend also saw Pippa have a brief swim in the pool helping exercise her leg muscles affected by both the tumour and the steroids.  On Monday I was wondering how on earth I was going to wash Pippa’s hair – balancing slippery shampoo, conditioner and Pippa all at once was going to be challenging.  My solution saw us stop off at the hairdressing college on the way home from Peter Mac.  She was well and truly ready for a sleep when we got home but it was certainly the perfect answer!

We are just keeping everything very low key; going along day by day.  Actually, as Pippa corrected me yesterday, “this is how we go mum – seconds, minutes, hours, days, weeks and then months.”  Of course she is correct.  Last night she had hours of belly pain from her steroids.  Once we fixed that she had hours of sleep, today she’s had minutes of radiation therapy, minutes of fun playing games waiting and then hours of sleep again.  Minute by minute, day by day; all to get more precious time for one precious girl.

 

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Tumor vs Reirradiation and Steroids

Over the past 17 months I have written some really difficult words so I can record, remember and communicate this journey James, Patrick and I have taken with Pippa.  Somehow though, these last two posts have been the hardest for me to write.  I am not writing pragmatically or clinically or even emotionally; I am simply numb watching my gorgeous Pippa struggle every minute of every day and I am exhausted hoping that the massive doses of steroids that she has been on for the past week can just keep the tumor at bay until the radiation therapy kicks into action.  To me, these words are just mushed up babble on a page making no sense at all but we have virtually disappeared again and this is the easiest way for me to communicate.

Last Friday we returned from Noosa straight into a  planning day and Tuesday was the day we were to begin reirrradiating Pippa’s tumour.  I know we have been told there is nothing more that can be done for Pippa and 12 months ago I was told Pippa could not have more radiation but I had researched this as an option to improve Pippa’s current symptoms, delay her disease progression and prolong her life.  This is not buying a cure, but buying time and we are hoping it will work.  Too early or too late and the treatment doesn’t have a chance to work (albeit temporarily) against the tumour.

Pippa needed to tick many boxes to be considered for reirradiation and then we had to wait.  I have been silently watching and waiting for weeks.  The timing needed to be so precise and if it wasn’t there was no point attempting it.  Both Pippa’s oncologists supported me and agreed she was a good candidate for the treatment but I was put through a lot of questioning from them to make sure I understood my (our – because I had discussed it with James, Patrick and Pippa) decision.  How could we not try to buy our precious Pippa extra time here with us?

In addition to the time waiting for the tumour to become aggressive enough to be attacked, radiation therapy itself needs time to start to work.  Firstly we had to make it from Friday to Tuesday.  Pippa declined even more rapidly on Saturday and Tuesday seemed like a lifetime away.  Tonight, after a 5th treatment this week we are waiting again.  This wait is proving even more painful.  James and Patrick have joined us in Melbourne earlier than planned.  We can’t be apart just now.  It’s the battle of tumour vs steroids and reirrradiation.  Pippa needs the radiation to hurry up and join the fight though – its’ currently taking its time stepping up to the plate with a rather nonchalant attitude.  Her little body is fatigued; walking, talking, eating and breathing exhausts her.  She is on such high doses of steroids that they too are taking a toll on her – making her leg muscles ache and sometimes her stomach cramp.

Even with all this going on inside her body she is still our amazing Pippa – not one complaint and just the right amount of cheekiness.

One thing that put a big smile on our faces today was hearing Pippa’s CD for the first time.  It’s strange hearing yourself  but James, Patrick and I were all very impressed and I think a pretty good indication of how Pippa felt was that she sang along to her own voice and when it finished she said, “there’s two more songs I want to record”.  I am very thankful for the opportunity that Pippa had to do this recording before we left for Paris.  I can hear in some of the songs the strain the tumour was putting on her voice and breathing  even then, but it is beautiful and another memory to have for each of us including Pippa.  I wouldn’t change anything I have done in the way I have dealt with this and if given more time we will create more memories and have more fun.  Even though Pippa can’t do much at the moment, just being with her every minute is fun and memorable.  She is the most beautiful and wonderful person to have in our lives.  She is the very centre of our little family and we love her so very much.

 

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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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9 months in

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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