Pippa Rea

Pippa's Journey with a Brain Tumour

Small Improvements

I’ve been reluctant to write a post simply because I’m feeling like I might jinx us.

We had mostly bad days across November, December and January and any days that were better didn’t last very long.  Even on good days the bad ones lingered in the background like a dark shadow on a cold winter’s night.   During the treatment in Melbourne I was told 3 times to be prepared for the worst.  Being told is one thing, but actually feeling it is by far another thing altogether.  I haven’t counted how many times since we returned I have “felt” it; it’s not something I wish to count and sometimes the feeling wouldn’t leave my heart.  Pippa always pulled through and I could let myself take a breath and would try and push the feeling away for a little longer.

That’s why on the day Pippa went to Tony’s Sungold Field Days I was thinking the good day would stay with us for only a few days.  It was 2 days before her birthday and I assumed she was rallying herself and finding all of her inner strength in preparation for turning 11.   Being in the wheelchair is tiring enough for any outing, but bouncing around over acres and acres of tracks through paddocks to see everything she wanted to see meant Pippa came home and fell asleep utterly exhausted but not before telling me how much she loved me.  It was the first time I had heard her the sound of her voice in over 2 weeks!

After the field days and Pippa’s birthday I was waiting for the decline to come again.  It didn’t.  Instead since the 11th February we’ve now been seeing improvement.  Small Improvements.

To break it down…………

She couldn’t drink; now she can drink milk, freshly squeezed orange juice and she’s even managing some water.

She couldn’t chew or swallow anything other than jelly and ice cream; now she can manage small amounts of foods that I either make or adapt for her and there is definitely a chewing motion and tongue movement.  I still have to carefully monitor choking with both eating and drinking though.

Although I didn’t realise at the time, now that it has returned, I know that she had lost, to some degree, her sense of smell and taste.

Likewise, her sense of touch is now different; she used to know that her feet were cold but for many weeks she lost that sensation; now she can recognise that again.

The TV is no longer up to detrimental volumes for the rest of the family so her hearing must be somewhat better.  We still need to speak directly to her and eliminate background noise or other people’s voices so she can hear properly.

She couldn’t move her left hand, arm or leg or shrug her left shoulder; now she has a small amount of movement in each of these areas.

Pippa had no trunk or neck strength, now she can manage some level of support to move and hold her body and head.  Her neck gets tired and aches if she’s using it for too long but she recognises when she needs a rest (unless of course she’s determined to push through and finish something!)

She couldn’t bear her own weight when standing; now, whilst she still needs to be held and supported, she can weight bear ever so slightly and move her legs (sometimes her left one freezes up)

She couldn’t speak, move her tongue or make a sound; now she can formulate words, make sounds, speak sentences and of course poke her tongue out.  It’s quiet, sometimes more breath than voice, and we still need to concentrate very hard to understand what she is saying but she can, at times, have some clear short phrases – my favourite one of course which I can always hear clearly is I love you mummy.

She was no longer able to hold things in her right hand and some days even touching the ipad to communicate it was difficult to hit the correct letter; now she is holding a modified spoon at dinner time if she’s not too tired and recently at school she held a texta to draw a dolphin.

Pippa is comfortable and is no longer on any pain medication.

Finally, Pippa is singing!  It’s not singing that we can necessarily hear, but her music plays, she can mouth the words (sometimes with a little sound) and she is enjoying it.

Whilst this is all fabulous, it feels much like waiting for a bubble to burst.  Instead though, we keep living each day in the moment, one day at a time.   Pippa is going to school for short periods most days and some days school even comes to her.  The grade 5/6 students now have a laptop program which has given Pippa incredible enthusiasm for her work and the night she received it she spent over 3 hours doing homework to complete her first project – one finger typing, with a slow moving arm but it was a maths project so she was determined.  We try and focus a lot on maths as it’s Pippa’s favourite subject, but it’s also great therapy for her brain.  Usually it’s just Pippa and I walking to school but occasionally we have a visiting entourage that comes to the classroom!

We have had a trip to the beach to try out a chair that can go in the water.  At the same time, it was a good excuse to do a “patrol” in the ATV!  Pippa now watches the weather reports closely to see when the next opportunity to go to the beach will be.  Of course next time she wants to go out deeper than just half way up the wheels and she’s started asking whether maybe one day she can manage to lay on a board!

Whilst Pippa still gets sad and very frustrated with everything that is physically different from the girl she used to be she is exactly the same Pippa on the inside with her beautiful, engaging and exuberant personality.  It’s my job to hold her tightly when she’s sad and to be supportive and encouraging of all those great traits she hasn’t lost.  Pippa has learnt a few magic tricks and enjoys baffling everyone with her talent.  All the tricks require the use of her brain and her memory both of which function completely normally.  Her physical ability to play games has improved again and she likes to make people laugh by introducing them to the fun game of “Fibber” with her noses already on!  The hysterical fits of laughter take a while to subside before the game can start.

Why is this improvement showing so long after we finished our additional treatment that was initially thought not to be working? And why has it come after such a long and drastic period of decline?  I don’t know.  Nor can anyone give me much insight.  Regardless, it is what it is.  I can’t change, worry or over think it.  What I can do though is be respectful of Pippa and this period of time.  It would be easy to sit Pippa in her recliner chair and watch TV all day but that’s not her.  Watching TV is now “resting” after periods of hard work on her part – school, physio exercise, homework, sitting on the daybed outside, outings in the car (she still needs to be lifted in and out) or in the chair.  I don’t know how long this improvement period is going to be for or whether it will continue, plateau or decline.  I have started to do physio with her.  I have had her capabilities assessed and our creative physio friend has devised some great fun activities that will hopefully compliment her current situation.  I’m not giving Pippa false hopes but I feel it is my duty to capitalise on any movement her muscles can achieve.  I also make sure that across the day her food intake includes something from all five food groups.  In fact, if I don’t Pippa reminds me!  Likewise, she ensures that she does her exercises and stretches. Even if I think she’s tiring she won’t stop until she’s not only done them all but done them all well.

These are all small but significant improvements.  We are enjoying them and hanging on to the roller coaster for longer.

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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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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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