Pippa Rea

Pippa's Journey with a Brain Tumour

Blended Days

I haven’t written a blog for a while and this one has been sitting here for at least five days.  Words are not easily at my fingertips and I couldn’t even think of a silly title to suit this post.  Each day blends into the next and I don’t know anymore which are good days and which are bad days.  I guess the good days are simply those that are not bad all day long.  Sometimes the bad days are helped with special things – loved visitors, games played, tasty treats (made, grown or bought especially), funny movies watched.  Sometimes it requires extra effort though to get through the bad days. We have played games and watched movies with Nan and friends – adults, teenagers, children. Games of strategy are still mostly won by Pippa.  Whipping butts is the term that comes to mind.  Yesterday it was her new favourite Tiki Topple and the old favourite Yahtzee (no less than four Yahtzees by Pippa – I’m not sure why the rest of us even bothered rolling the dice).  Friends recently made and delivered a behind the scenes making of the CD DVD along with a funny Shake-it-Off music video.  Such an incredibly thoughtful gift.  All this is fabulous and so much appreciated giving Pippa (all of us) a lift.  Today she is tired and just watching TV is an effort. We have a sign for when we don’t want visitors, it’s been outside our front door all day.

There is nothing wrong with Pippa’s brain.  Everything is there.  Every thought, every feeling, every movement, every strategy, every memory, every wit, every piece of humour, every bit of logic…………

It’s the nerves in her brainstem that carry some of this information that are not.  Thus, her brain is also filled with frustration and sadness, confusion and reality……….and her body is no longer working the way it should.

When Pippa tries to walk the messages from her brain don’t reach her feet to tell them to move.  She still knows exactly what she wants to say, but her nerves that control her speech are too damaged for the words to come out.  In the past days she has still laughed at a funny movie or giggled at James and Patrick’s silly antics but the TV volume has to be up high and our voices have to be directly in front for her to hear.  I even think she has started to lip read.  I now have in home nursing help at minimum twice a day and often more.

Each day I am emotionally, physically and mentally heartbreakingly gut wrenchingly tired. (I’m sure there’s lots more ‘ly’ words I could use)

Never have I reflected more about the phrase “careful what you wish for”.  Nothing I have wished or thought could have prevented this, but just like any mother I would look at my daughter, my youngest, and not want her to grow up.  “Stop Growing,” we all say.  When Pippa was little I used to tell her I wished that she could fit curled up on my lap forever.  She is the best cuddler.  Koala Cuddles we call them.  When Pippa went into grade three I thought, no more junior school and with it also thought, too soon she will be finished primary school altogether.  Now I wish I could fast forward years; have this period in our lives be nothing more than a forgotten bad dream and instead be packing my carefree teenage Pippa off to university ready to embark on whatever exciting adventure the world has in store for her knowing how easily she will fit in to her social, sporting and academic dreams………

Instead, I now have to wish for Pippa that I can understand what she says, that she doesn’t fall when I help her get up, that she can hear the words from the story I read and that she wakes up from her sleeps.  The smile on her face, the way she looks at me; her eyes filled with love just before she goes to sleep and then again when she wakes are the most precious things in the world.

 

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A Special Day With Tony

Today was a very special day for me. My grandpa Tony came at 11:30 to pick me up and take me out on a very special lunch at a very special place… called “Cheese World.” I had been planning to go to Cheese World with Tony for a while and today was the day. It was raining as we were driving there, but when we got to Cheese World we were greeted by some of Tony’s friends (he has lots of friends at Cheese World) Kim, one of his friends at Cheese World decided to have a chat with us. So we chatted and chatted and chatted and so on. I met lots of Tony’s friends and had fun. As we were leaving, Tony had to see a lady Lou for the Field Days. I told her that the Field Days was on my birthday last year and this year. We left Cheese World and headed off to Cudgee.

having a special lunch with Tony

 

When we got to Cudgee we went in to see the Bullocks (a type of cow).  There was lots of Bullocks and one came right up to my door, I quickly took a photo of him, I also got a photo of Bullocks on their own, I got a few good shots even of Tony feeding the Bullocks and giving them their lunch.

After that Tony and I drove down to Allansford and we went to my uncle Eugene’s house and I saw all my cousins. My cousins Scarlett and Stephanie were with their friend,we played UNO and went to Scarlett’s room.

We finally were able to get home, on the way home we had to pick up my grandma cause she was going to come home with us. I had a great day 🙂

Written especially by Pippa 🙂

my Tony loves his Bullocks

my Tony loves his Bullocks

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Good Vibes Only

Good Vibes Only is what I would like and what I need but they seem to be evading me.  Last week Pippa noticeably declined.  Not in a big way, but there were slight, subtle changes that I knew were signs.  First she woke up one night when her hearing changed again.  She was terrified and scared; the empty, hollow sound of vacant space within her ear nerves.  Nightmares began.  They were always the same and she clung to me with force.  Next her breathing became worse which we managed (and when I say we, I refer to the constant medical support I have) with symptomatic medication.  The medication is also helping with her anxiousness and her nightmares. I am open and honest with her but there are things she can’t mention or talk about and even though I am with her every minute of every day she is scared.  She has every reason to be scared – she’s a ten year old little girl facing a demon that even adults shouldn’t have to face.

Her breathing now is ok and, for the time being, under control but her balance, walking and speech have all deteriorated to some degree and now these symptoms seem to change hourly. At the same time though her facial palsy, smile and eyes are better; having improved somewhat.  For a while I have been treating both eyes for not closing or blinking properly, now it is back to only being her left eye that is affected and only slightly. Currently I no longer have to thicken her fluids but for how long I’m not sure.

It is a confusing and hour by hour day that we live.  For a while Pippa was best in the mornings; refreshed and rejuvenated from sleep.  Now that her symptoms are changing so do our days – all the time.  At times she is now better in the afternoons because she is managing and adapting to her weaknesses across the day.  Other days she is worse in the afternoon because she is tired.  She can also be worse in the mornings if the pressure on her brain is greater after lying down.  Three days ago she could barely walk the first part of the day yet in the afternoon she decided that she would walk not “roll” (our reference to having to use the wheelchair) through the supermarket.  She held mine and Patrick’s hands and the next thing I knew she’s doing lunges up and down the aisles.  Very clearly she said, “What? This has got to be good for my muscles mum!”

Pippa’s determination and “I can do it myself” attitude still shines through.  For ten days nowI have been doing twice daily physiotherapy with her. The steroids are now at a low enough level that perhaps we can start to rebuild her muscles.   I am doing all that I can.  I can help her muscles become stronger, but I can’t help her nerves that control her balance.  Physio also helps her mentally to know that although it is a routine, it is beneficial and purposeful.  On warm days we go to a friend’s pool where, in private with her brothers at her side, the weightlessness means she can run, walk, swim in the water……….essentially it means she can be free.  It’s really hard for an outdoors girl who in summers gone by has lived at the beach and loves the ocean a to not be able to walk on the sand or even consider standing upright in waves on hot days.  Pippa, not unlike other children, lived most of her life until now in bathers.  With nostalgia in her voice she reminded me on the hot day recently of days she has spent at the beach boogie boarding all day long being able to take relief from the heat in the waves.  Now she is unlike other children and she feels it.

I don’t tell Pippa I know what she’s feeling.  I don’t.  I can’t.  Only she knows.   Instead, I tell her I understand.

We still try and do something fun every day.  But fun is becoming more and more limited due to her speech and walking.  The past two days it was a trip to the movies.  The three flights of stairs we had to climb to Cinema One on both days (of course!) was ridiculous, tricky and tiring.  In this day and age I found myself wondering why and how there is no elevator?  Today it will be a visit from beautiful friends driving a long distance to see us for lunch.  They will bring with them hugs and love for all of us.  Afterwards a swim in the hot afternoon. Then maybe more movies later in the week – perhaps downstairs may be helpful.  At some point Pippa has a shopping list for school she needs to fill.  We will roll, I know, but it’s good to look forward to and plan for normal life when the life surrounding us is so abnormal.

Last year on the first day of radiation, the first day of chemotherapy and the first day Pippa had to knowingly have a blood test  I wore a t-shirt I had been given.  It had a picture of the Eiffel Tower on it and it said Follow your Heart.  Pippa is my heart.  This year in Paris I bought another t-shirt.  This one has a photo of the Eiffel Tower taken from the exact spot we picnicked.  It says Good Vibes Only. You don’t always need a plan.  Sometimes you just need to breathe, trust, let go and see what happens. 

I have no more plans.  I have trusted everyone that has helped us on this journey.  Sometimes I can’t breathe.  I’m not ready to let go.  I don’t want to see what happens.  My wish for 2015 is simple but elusive.  I would like to have Good Vibes Only.

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