Pippa Rea

Pippa's Journey with a Brain Tumour

Dec 10

Finishing up and leaving Melbourne

by Virginia Rea

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.

Patricia & Sarah
With Liz
A specially made Christmas decoration

 

 

 

 

Fun Stuff Updates

1 Comment »
Nov 28

Steroids

by Virginia Rea

Today Pippa’s oncologist feels she has plateaued and is perhaps stable – I’ll take that.  Tomorrow instead of having an extra day of treatment he has told her she can go on whichever rides she likes at the Challenge Christmas Party!  When I queried him about the head spining, jolting rides she will undoubtably seek out he shrugged his shoulders and said, “Who cares, maybe she shouldn’t but let’s just let her have fun.”  He’s right, she’s been to the edge, a fun ride can’t do any worse than that.  Pippa’s in bed nice and early and is looking forward to it.  The poor little darling is so tired each day.

Today we had invited Pippa’s teacher to come and see her so she could show her around the Royal Children’s Hospital.  This was something that Pippa herself had suggested a while ago but it never eventuated as our treatment and visits ended before we could arrange it.  Thus, we decided to do it this time around.  In hindsight it would have been a wonderful visit to do much earlier in our journey.  As Pippa said, “then she knows where I am and what I’m doing when I’m away from school”.

Yesterday I needed to fill another script of steroids for Pippa which I did whilst she was on the radiation table at Peter Mac.  When I was called to collect the script the hospital pharmacist asked to speak with me.  He was quite concerned about the high dose of medication and knew it had been for a prolonged time based on how recently I had filled the previous script.  He was checking that I understood how to take the medication, that I was counteracting some of the side affects with other medication and wanted to know how long I had been on that high a dose and if I knew how much longer it would be required.  He was being very thorough but also very kind.  I reassured him that I understood everything and that yes, we were having occasional issues but I was essentially managing everything as best I could with appropriate medications.  He was comfortable with that.  It was not until the end of our discussion when I corrected him that my script was not for me but my rather petite 10 year old daughter.  He was speechless.  We shared a look of sadness and I quietly left clutching on tightly to the bottle in my hand with tears welling up in my eyes.

Pippa has been on this dose of steroids for 2 weeks now.  It is almost twice as much as the highest dose she was on last year and that was only for (I think from memory) about 5-7 days at the peak of being on steroids for approximately 5-6weeks.  Dexamethasone reduces the swelling around the tumour so the radiation can have a chance at working.  Neither of her oncologists is ready to risk taking her down from this dose just yet.

Updates

9 Comments »
Nov 26

Minute by Minute, Day by Day

by Virginia Rea

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.

IMG_5341
Exercising legs - never out of James' arms
Exercising legs – never out of James’ arms
Strolling the Market
Walking her leg muscles
Walking her leg muscles
Reading in bed
Reading in bed
Alex taking the boys out for a few hours
Alex taking the boys out for a few hours
Hair Wash and Dry
Hair Wash and Dry
Rolling with Tony
Rolling with Tony
Kisses from Yarra
Kisses from Yarra
Cuddles with Yarra
Cuddles with Yarra
P1100874

 

Updates

12 Comments »
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.

 

 

 

Updates

9 Comments »
Mar 23

Brain Therapies

by Virginia Rea

During radio therapy at Peter Mac Pippa’s oncologist and nurses strongly advised me that for at least the next two years I should support Pippa in undertaking and pursuing a range of therapies to assist her brain in its development and to minimise the side affects of the radiation.  This was reinforced and supported by her music therapist at Peter mac and by RCDFund and their music and yoga therapists who were also with Pippa  throughout radiation.

Thus, I have committed to an ongoing routine that so far incorporates drumming, yoga and dancing in addition to her sport (currently tennis and basketball).  On top of school she also does online brain training activities and games.   These therapies provide Pippa’s brain with stimulation in rhythm, memory, coordination, meditation, concentration, flexibility, balance  and left/right brain function.

Just as important though, each therapy is so much fun and she loves learning   them.  We are privileged that her “therapists” (teachers) are all special people in her life, bringing with them an abundance of positive energy and enthusiasm for what they love and in turn, sharing that with Pippa.

Drumming, yoga and dancing.  How lucky Pippa is to be able to have so much fun doing therapy!

In the words of her drumming teacher, “Yeah,……Good Work!”    Drumming Lesson

 

Fun Stuff

2 Comments »
Feb 4

Patience

by Virginia Rea

For the third cycle now Pippa’s blood counts are too low for too long.  It’s not a major concern, just a small and apparently rather interesting problem that needs solving.  Although now behind on her treatment plan, she continues to be healthy, happy and full of life.  As the plan is written in sand anyway I’m not to be  bothered by it especially as her doctor is not – he just has to figure out the best way to overcome it.  We will make the drive back again to Melbourne on Sunday ready for Monday morning and more blood tests that will hopefully allow chemo treatment.

To think that I am even using the phrase, “hopefully chemo treatment”!

On the upside, Pippa’s MRI report is one, singular word – Stable.

I don’t think I have ever used a singular word to describe anything in my whole life!  I certainly haven’t used a single word to “do” anything!  This one little word doesn’t tell me a whole lot but apparently it is the best outcome for an MRI result and more importantly, it screams to me patience at a time when I’m getting really itchy feet.  I guess the weekly drive down for low blood counts is also teaching me the same lesson.

Seven and a half months ago I literally collapsed into the the doctor who delivered me the very first piece of numbing news.  I still cannot believe the daily conversations I now have, the words I have to learn and the information I have to process.  I had to be patient to get a diagnosis that could be worked with and treated, patient to wait for the steroids to do their job, patient through radiation, patient for an MRI scan that could be read and now patient to get a consistent treatment plan and continue with what lies ahead.   Pippa, although still not missing a beat, is the most patient of all.  Never complaining about numerous appointments, treatments, tests nor the thousands of kilometres that we travel.  She happily went off to school on the first day of the school year full of excitement to see her friends and teacher but completely OK that she would miss the second one and most of the third.

Pippa (along with her understanding and patient brothers as well)  is certainly teaching me some life lessons.

School for 2014

Updates

4 Comments »
«Older Entries
Newer Entries »
Blog at WordPress.com.