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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Santa’s Little Helper

We have been receiving parcels which is always exciting, some very cute named Christmas stockings are hanging in our lounge room and a magical Christmas tree stands elegantly enticing endless comments from people who see it.  On Friday Pippa received another parcel and opened it.  Inside was a Christmas Teddy Bear.  She aptly named him Santa’s Little Helper or ‘SLH’ for short.  Geoffrey, Henry, Monkey and Harold have been carefully put aside to be re-cuddled after Christmas.  SLH has constantly been with Pippa since Friday and with him he has brought a little Christmas Hope and his own little magic……….

Santa's Little Helper

Santa’s Little Helper

Until Friday Pippa was focussed only on Christmas for everyone else:  She had delivered little gifts for her classmates, friends, family and the u18s basketball team.  Christmas shopping started on the day of our Christmas Sights Visit in Melbourne when she purchased her first of three gifts for James and Patrick. There are mysterious presents abound under the tree with “Love From Pippa” and by Friday she was completely organised ensuring that everyone around her would have a special Christmas from her.

Then Santa’s Little Helper came in the mail.  All day Friday she clung to him.  Saturday morning she woke excited.  At first I thought she was excited because we had decided we were able to go to our annual extended family Christmas gathering in Anglesea.  She was but that wasn’t what she was initially excited about.  Pippa needed to get ready for her Christmas.  She needed to write her Santa list.  Santa was coming in 4 sleeps and it needed to be done.  That very minute!  The list was typed carefully on the computer, printed, laminated, hole punched, placed in a folder and left under our Christmas Tree.  Yes, she’s her mother’s daughter; it was categorised and spaced out perfectly, but just shy of being put on an excel spreadsheet!  Only then could we leave for Anglesea – “Dougfest” would be 24 hours of fun with cousins, plenty of food, gifts, our annual raffle and a larrikin Santa handing out presents………  When we arrived Pippa was asked by Chelsea-Lee’s beautiful little face gazing up at her if would please go on the trampoline with her?  Pippa said, no she wasn’t going to be able to go on the trampoline today.  Later on in the afternoon though she was adamant she was going on the flying fox – and fly she did!  Complete with a merry band of followers!

We returned home to find that not only had Santa been to collect her list, but he had also left her 2 bracelets with magical powers made especially for her by his Elves!  Indeed, the magic of Christmas started to spread and Pippa’s face began to beam at the thought of Christmas Eve and Christmas Day.

Carollers rang our door bell last night………

We have done our annual Wishing Tree Shopping from the raffle James started 8 years ago…….

Shopping for the Wishing Tree

Shopping for the Wishing Tree

Pippa didn’t put a pony on her list, but one turned up for her to ride and pat………

Nice to meet you, Biscuit

Nice to meet you, Biscuit 

Two weeks ago Christmas Day could not come quickly enough.  Now Pippa seems a little bit stable,  I am continuing to slowly and carefully drop her steroids and 2 days out Christmas is finally within our reach.

It’s now beginning to start feeling a lot like Christmas around here and thanks to Santa and his little helpers Christmas magic is shining through Pippa………

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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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Steroids

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.

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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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Back to School and Keeping it all Fun

Exactly what has pippa been up to since returning from Paris?

Well, Pippa, James and Patrick have all settled back into their routines of life, school and sport.  I wanted to leave Pippa’s beautiful blog post up before I posted anything else because it truly is gorgeous.  She loved writing it, taking the photos, going through all her purchases and reflecting on everything we did.  She really did enjoy every single day – in her words at school assembly when asked what she enjoyed the most, she said, “Well everyday we saw or did something different that was really good and every place was special”.  Once again thank you to those who helped get us to Paris so quickly and also of course to the friends and communities who rallied around us last year working very hard with exactly that purpose in mind.  I am eternally grateful to have been able to create this special memory for my family.

Pippa has now been back at school and aside from her breathing still being laboured we are really lucky that essentially for the time being on the outside she is not so different from any other ten year old.  In fact, she has started back at tennis, dancing and drumming.  At the moment we’re waiting for singing as at the end of the day her breathlessness limits how much she can speak and therefore sing.  Pippa represented her school at regional basketball and although they didn’t make it through to the next round she rocked the defence and had a lot of fun being part of a team.  Getting fouled when you’re ten is pretty cool actually 🙂   The school swimming program has started but that proved tricky as her breathing means she takes in water which makes her feel sick.  Thus, in keeping with the “Everything Fun” theme she now plays happily in another pool capably swimming and duck diving at her own pace.

Fun times have also been spent with cousins – birthdays, lunches, dinners, catch ups, plays and even a harvest picnic dinner with the world’s greatest Grandfather, Tony – just don’t ever call him a Grandfather!  We arrived home from Paris to information about a Rea Reunion at Christmas time so hopefully that will come around soon enough and more fun can be spent with many more cousins.

We spent last weekend in Queenscliff with cousins and lots of fun was had doing everything from crafts, to playing cricket, riding buggies, swimming, bashing a piñata, eating (of course) and going to the market.  Lucky or unlucky for the piñata the good old cricket bat came in extra handy.

After Queenscliff we needed to be in Melbourne for Patrick to run in the state athletics so took the opportunity to catch up with more cousins…….So much fun and laughter and Pippa was even taken to kinder to “share”.  Darcy & Alexander were full of cuddles for her and continually announced (and  even sang) that they were going to keep Pippa for ever and ever!  Apparently she’s going to live with them and never ever going to leave.  Just ask them!  So cute!

I agree with the boys.  I can’t imagine why they wouldn’t want to keep her.  I think keeping Pippa forever and ever is a perfect plan.

Not letting her go....ever

Not letting her go….ever

 

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