Pippa Rea

Pippa's Journey with a Brain Tumour

Ten Fingers, Ten Toes and a Cute little Button Nose

28 September, 6 months.  James decided to dig deep into his wardrobe and have a clean out.  A feat generally unheard of from a teenage boy!  I didn’t realise he was even doing it until he emerged carrying a box.  Apologising to me he handed me the box telling me he thought that in it were some birthday cards.  James’ bedroom used to be Pippa’s before I moved her into a room close to mine.  Close so I could hear her every breath every night.  And then, later,  I moved her even closer – right into my room.  James was correct.  In the box was a collection of birthday cards of Pippa’s.  I knew this without lifting the lid.  But lift the lid I did anyway.  To my amazement sitting on the very top of some of her birthday cards from when she was a toddler were two ultrasound pictures.  They were from twelve years ago to the day.  The hairs stood up on the back of my neck, my heart stopped and I burst into tears.

Ten fingers and ten toes.  As parents we all check and count with the same intensity of looking at a four leaf clover – making sure we’re counting correctly.  We listen for the first cry – a sign of good, healthy lungs.  We marvel at our newborn’s instinct to attach to the breast and suckle.  They scrunch up their little bodies so used to being curled up in the womb and then time stands still when they first lock eyes with their mother.  Perfect moments of bliss.  Pippa was all that.  Perfect in every way a tiny little newborn should be.  Perfect in the way that all mothers want and hope that their newborns are.  She was born at 39 weeks measuring 48cms and weighing 8 pounds 1 ounce.  ‘Short and fat’ I remembered my brother calling her!  She had an Apgar score of 9 at 1minute and 10 at 5minutes.  She breastfed immediately.  She slept perfectly.  She rarely (in fact I could almost say never) cried.  Pippa was utterly perfect.  A blessing to James, Patrick and me.  Utterly adored.  A treasure we only had for eleven years.

Ten fingers, ten toes, a cute little button nose and a time bomb ticking inside her brain.  I found myself wondering what if I had have known then? What if, at her 20 week ultrasound I knew what twelve years time was going to bring me?  Of course I would have not done a thing.  How could I not have a life full of Pippa for eleven years?  How could Pippa not have a life of eleven years?  Would have our lives been different if I had known what was going to happen?  They most certainly would have.  I know how I was for the 2 years I did know what was going to happen.  A living hell every time I shut my eyes.  I shudder at the thought of having to do that for 11 years.  I’m grateful that twelve years ago I didn’t know what lay ahead.  I would not have wanted that crystal ball.

I then found myself wondering about the next 12 years.  What would the crystal ball show if Pippa hadn’t had a time bomb in her head?  Would she grow up OK?  Unscathed?  The 6 o’clock news doesn’t give us much comfort for what lies ahead – fears for teenagers and young adults; and the fears for our daughters are possibly worse than those for our sons.  I found myself asking what if I just accepted the time bomb and alleviated those fears?  No was the very quick answer.   I would take any fear that I could possibly ever have for the future if it meant that Pippa was still here.  We can hold our children tightly and fear for their safety, their wellbeing and their future.  But I can’t hold Pippa anymore.  To be able to hold her, feel her, hear her, see her smile…far outweighs any fears that the newspapers and televisions can put in front of me.

Instead I have new fears.  Fears for me, James and Patrick in a life and a future without Pippa.  Fears for our wellbeing.  Fears for the scars that Pippa’s brothers will forever carry.  A tragic burden they should never have to endure.  Heartache.

Count as we might, superstitions or not, it turns out that ten fingers and ten toes cannot guarantee us anything.  Not life.  Not happiness.  Not health.

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Coping with Chemo

Pippa’s 12 month chemo cycle is supposed to be 5 days on, 3 weeks off starting every 4th Monday.  The late drop of bloods in the 4th week of the cycle however has meant that this has not been the case and with each cycle we have had to wait until Pippa’s blood test results are at a level where it is safe for her to receive chemotherapy.  The outcome of this though is that it has made her behind on her 12 month, 4 weekly cycle and thus, this is why her doctor is adjusting her doses to try and enable the chemo to be taken monthly.

This of course is all written in sand anyway and lead by Pippa in how she responds and copes with the chemo and results of current and future MRIs.  Thus, we are zig-zagging along learning as we go with not really any  guide book to show us the way.  But that’s OK we seem to be managing quite well.

The first day of Pippa’s last cycle was the second last day of 2013. After that night I was definitely not looking forward to any form of New Year celebration at all.  I gave Pippa the 2 (new levels of) doses of chemo and within 1-2 hours she was in all sorts of pain and discomfort along with awful waves of nausea.  Needless to say, Taylor Swift and heat packs were called upon.  Her body was aching and he tummy was twisting in knots.  I could see the hurt in her eyes.  She was exhausted from the day anyway so curled up in a ball while Taylor Swift sang her to sleep but she tossed and turned all night.

The next day I decided that I would have to resort to using the really strong painkillers I have in case  the side  affects of chemo become unbearable.   Pippa is so strong; she didn’t want them on the first night but I couldn’t watch her writhing like that again.  We had stayed in Melbourne due to our long day at the hospital and driving back I thought like I always do.  (A lot of thinking is done in the car while Pippa sleeps. )  I hadn’t been expecting the pain to be so extreme the first night and wondered what I could do to help.  I decided to put in place a routine for the next night.  I knew that once we need to use the painkillers we have reached a threshold so to speak and there is no margin for adjustment in treatment if her doctor needs to do so.  

Day 2 of the cycle and at 4.45 I gave Pippa her first dose of chemo, at 5.15, her second, at 5.45 we ate a healthy dinner of protein and vegetables.  After dinner she had a deep, warm bath.  Pippa then stepped out of the bath and onto a massage table for a 45minute massage and then into bed.  This meticulous routine was followed for the remainder of the chemo that week and Pippa did not have even a hint of pain.  Most mornings she woke with a sore belly, but that has been normal and even continues for a few days after she finishes the chemo. That pain is easily fixed with a heat pack.

Having been able to cope with the different dose of chemo in this way means we are not at our maximum and if we need to get more aggressive the room is there to do so.  The pain killers are still up my sleeve, I’m not afraid to use them but I am fully aware of what I am dealing with.  Pippa is taking it in her stride and by me changing the way I help her do that we are still well and truly on the front foot.  Hopefully we can manage the next cycle in the same way.

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Sorry, No Pic of an MRI……..

A full day at hospital today also included an MRI that we had not told anyone about.  I have quickly learnt that keeping a poker face and holding MRI appointments close to my chest is a much simpler way to deal with the anticipation.  Unfortunately, it also seems to bring secret tears as I sit through the scan.

The result however, has proved worth it.  Whilst reading an MRI like this takes many weeks of intricate comparison to the previous scans, Pippa’s oncologist was very keen to have an “unqualified”  look for himself.  He is happy and can see some positive signs in the pictures so far.  This at last (after 5 and a half months of surgery and treatment) matches something solid and medical on the inside with what we see on the outside.  It also, I imagine, motivates and confirms for him that despite the length, the twists and turns and the intersections without directionsthe road he is following is perhaps the right one.

I should have taken a photo of Pippa in the MRI tunnel to placate my mother who likes to see photos on every blog.  Better still, I should have taken a sound recording of the most boring 45 minutes I always have to sit and ‘vibrate’ my way through whilst Pippa gets to watch a movie.  I didn’t.  I thought instead about my grandmother, Nellie, and secretly thanked my cousin who recently reminded me that her strength is passed through all of us and she sees it so clearly in Pippa and I.  Then I shed a few tears.

Now, I’m drinking bubbles and Pippa’s celebrating with another, in some ways slightly stronger and more aggresive than previously, course of chemotherapy.

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Taylor Swift

When I was very first pregnant with James 14 years ago I was told by a friend your children will take you to your highest highs and your lowest lows but they are the most wonderful thing that will ever happen to you.  I had no idea how extreme these highs and lows would be and how right he was.

Yesterday was a highly anticipated day as we were going to the Taylor Swift ‘Red’ Concert and Pippa was a lucky girl; one of four little girls chosen by Challenge to meet Taylor.

A red dress and a red flower hairpiece were arranged.  A little bracelet was made by a friend as a gift – one for Pippa and one for Taylor.  An autograph book and pen were on hand. All was set, what a day it was going to be!

We woke in the morning to a bit of blood smeared across Pippa’s face and a slight blood nose – James wondered if Pippa was perhaps going a little too far with the Red theme!

We drove to the RCH with ice and tissues.  Blood tests were done and an emergency blood platelet transfusion was ordered.  Pippa was not pale and lethargic, she was literally running around the hospital whilst we were waiting.  The nurses and doctors knew about the date with Taylor and explained to Pippa she needed to have safe blood to be able to meet her.  

Plans were changed and we got ready for the concert in the emergency department.  There was a point were I didn’t know if we would make it in time and if we would would still be able to meet her.  Challenge were so supportive and communicated everything with Taylor’s management to please still let Pippa come to meet her

The hospital rushed through the transfusion to as fast as it could go.  We were late but Taylor waited for Pippa and what a beautiful time it was.  Special cuddles with a world superstar.  Taylor told Pippa how gorgeous she looked in her dress and how pretty the yellow strap on the bracelet was (Pippa’s new favourite colour).  Pippa was so happy.  I, on the other hand, was still pulling myself together just from getting there and wondering how much can one mother bear?

The concert was an amazing spectacle and every song was sung along to.  Taylor has been on this journey with us from the start.  Her songs have been sung through the highs and the lows.  She can get rid of  nausea and now also is capable of making blood transfusions bearable.

What concert, what a superstar, what a girl….peaks and troughs; what a day!

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The Waiting Game

Waiting, Waiting, Waiting……..

Again I wait.  This time because the post radiation scan cannot be used and needs to be regarded as a pseudo scan; the radiotherapy is still working in Pippa’s brain and thus the scans were distorted.  Now we just wait longer for a time when the scan can be certain to be clear of radiation.  After seven weeks of huge levels, this was not unexpected but Pippa looks and is so great it’s a bit disheartening and would have been just lovely to have something medically sound to validate her external signs.

This is what I have learnt recently:

  1. Sleep is important for every part (other than the golf ball in her brainstem) of Pippa’s body to stay healthy
  2. Really bad belly pain caused by nasty doses of chemo drugs is best dealt with heating one of Nan’s snuggle sacks and lying on the couch under a gorgeous, soft, snuggly aqua rug (by the way, yellow now seems to have overtaken aqua!)
  3. Nausea is most likely cured by cranking up Taylor Swift and singing (sometimes even dancing) your heart out – breathing and distraction!
  4. A vomit, if it’s going to come, should not to be confused with nausea and although it doesn’t happen often, when it does, grab the big purple bucket as quickly as possible.  It will be fast and furious, but will no doubt end with a big smile 🙂
  5. It is what it is and there will be twists and turns; peaks and troughs.  It will change the way I am but I can’t change it.  Our journey is not a path already planned or plotted;  we have no map to follow, no guide book and no directions.  I am being led by Pippa’s oncologist and follow one step behind him.  He is guided by Pippa.  So far she is doing an incredible job of leading us through the maze.

I don’t look too far ahead.  I stay in the present and deal with each day as it comes.  I am there whenever and wherever my children need me.  As a family I will take the opportunities that present themselves to create memories and experiences for us.  I am used to doing things quickly, taking control and getting the job done.  This is different.  There was urgency before Pippa’s diagnosis.  For now, I need to be calm and patient.  I need to wait.

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