The first week of chemo is done and dusted and we are one step closer to the end of this next phase of Pippa’s journey; one day at a time, one week at a time for the next 12 months.
We are fortunate that Pippa was able to take both her chemo drugs orally along with a plethora of supporting medication. This meant although tired at night time and on the weekend, she was able to go to school and be happy with her friends. Normality in itself is a wonderful medication. She rode the wave perfectly with no nasty side affects showing their ugly head.
One step forward
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Entering the Unknown Again
A day at the hospital with serious warnings about how “disgusting” but important one of Pippa’s chemo drugs will be……….
A drive home feeling like a mobile pharmacy…….
Drugs dispersed…….
A shrug of her shoulders followed by a comment, “Hmmm, that’s not so bad after all!”
And we’re off on our next and very long phase of killing the tumour that nests within Pippa’s precious brain…………
Fearless
Not only did our Make A Wish Trip allow Pippa to snorkel with the fish on the Great Barrier Reef, we were also able to visit the Cairns Zoo, ride the train and Sky Rail to Karrunda to visit the butterflies, do more snorkelling on Green Island and catch up with some old friends and make some new ones. In addition, the trip also highlighted to us our fears………..
Patrick, for example, is incredibly fearful of butterflies landing on him; James, is not that great with riding above the tree tops in a sky rail capsule; and my fear of snakes came as no surprise at all! (I’m sure all three of us are not alone in our fears either!!)
Pippa on the other hand, fears nothing. We tried our hardest, but could not come up with anything she is scared of!
A week in Palm Cove, a few days in Melbourne and some time at home. We have spent the past two weeks with no hospital appointments, doctors or drugs. Now we start on the next 12 months. Needless to say Pippa is not fearful of anything ahead of her (except perhaps of no longer having Jessie from Peter Mac doing her blood tests). Our trip to Melbourne this afternoon was spent singing Taylor Swift songs at the top of our voices, a bit of Taylor Swift education for me in case I didn’t know a few facts, and a brief discussion about killing tumours with chemotherapy drugs that may or may not be pleasant to take. All in her stride!
What’s Next
Pippa has returned to school this week and I am busy tying up 100s of loose ends from my life prior to 26 June along with planning our future routine. We currently have a month off major medication although the radiation is still actively working in her body for another 2 weeks. In October we commence 12 months of intense chemotherapy. We will continue to travel to Melbourne for check ups, specialists, scans and to collect the drugs. Fortunately, the medication can be taken orally which hopefully means minimal disruption.
My children and I are fortunate to have so many people caring about us and I am extremely grateful. It is evident to me returning home how important it was for James and Patrick to be able to continue with a normal routine. The support Pippa and I had in Melbourne made our life away from them so much easier. I am so lucky that I have friends and family in both locations. I often thought and also commented that it would have been much harder had we relocated for 7 weeks to a place where we knew no one and had no support. I know that is the situation for many people who have to travel long distances and interstate to receive specialist medical treatment. It must be incredibly difficult and daunting.
To everyone in Melbourne and Warrnambool who has shared coffee, wine, walks, food and laughs with me, “Thank You”
To everyone who has given up their time and energy for my children and I when you didn’t think you actually had any spare time to give from your own lives, “Thank You”
To everyone who has gone out of their way to do amazing feats for us, “Thank You”
To everyone who has read and continues to read this blog and therefore sends positive thoughts our way, “Thank You”
To three businesses in Melbourne who unknowingly made our life a little easier, happier or pleasant when we dealt with them: Fleur Depot De Pain (Cafe on Arthur St off St Kilda Rd); Classico (Restaurant on Arthur St off St Kilda Rd); and Uber (the most fantastic App to download and use instead of a taxi), in particular Pippa’s favourite driver Adriano “Risotto Man”
Radiotherapy Comes to an End
Six and a half weeks of radiotherapy and the second stage of the life we have been thrown into is over. I don’t actually know how I feel about it. I thought I would feel happy.
I feel a little vulnerable because I don’t have the security of being at a hospital every day.
I feel a little anxious because I won’t know for a long time what’s happened on the inside; although the outside signs are truly positive.
I felt a bit sad this week because radiation was coming to an end. I cried this week because I heard the recording of the most beautiful song I would ever hear – an angelic voice singing about what should have been a very frightening experience. I had tears today when I said goodbye to people that have helped us every single day over the last 7 weeks.
I laughed today when Pippa leapt off the bed for the last time, ran out of the room, down the tunnel and out the doors with radiotherapists chasing after her. She was presented with a bunch of colourful balloon flowers, and a cartoon drawing. Soon she will received a dvd of her experiences with her song as the backing track. She posed for photos and promptly threw the balloon flowers in the air as soon as the cameras had finished clicking.
The approach the staff at Peter Macallum Cancer Centre have to paediatric radiotherapy is truly beautiful. Children come into an adult hospital to be treated in an isolated room by a massive machine that exudes strange noises and smells. Their body part being treated is strapped in still and lined up with laser beams. Despite all this, our experience has only been positive, supportive and caring throughout the whole process. From reception to music therapy, to mask adjustments and of course, radiotherapy, every single staff member has been a joy to deal with and a pleasure to be around. Never once have I hesitated in leaving Pippa alone in that treatment room because they make us feel so secure. Never once has Pippa asked for me to come back in. Requests have been accommodated without hesitation and our continual entourage of visitors have been welcomed and included. I cannot thank each one of them enough for making our experience not only bearable, but pleasant, happy and memorable.
Over the past few days Pippa has written more than 25 thank you cards to every person she has met across our course of radiation. Each card included a photo and a specific comment about that particular person or what they have done for her.
This week small changes have been happening. The steroids which perform such an important job initially are now no longer required and their side affects are starting to visibly reduce. Pippa has her old cheeky personality back most of the time, the chatter is starting to be constant again and she wants to be more active. Her eye has opened a bit wider, closes a bit more and tries really hard to move. Her balance and coordination seems to be better. These are small signs and these are good signs, but we know that it’s still a long commitment we’ve signed up for.
Today radiation came to an end and now we have a month off before our next phase begins.
On the bed for the last time
It’s Over!
A bunch of Flowers
Tongues Out for the Last Day
Colour Coordinated!
Claudia talking to Pippa through the microphone to the treatment room
How To Impress Your Grandfather on Father’s Day
Hit him for six in cricket!
And she did – right over his head! I didn’t buy Dad a bottle of wine, a block of chocolate or a pair of socks; I just said, “Happy Father’s Day Dad, here’s your grand daughter.” We ate fish and chips and packed the cricket bat and tennis ball. Never one to not give sport a go (nor for that matter, not be good at it), Pippa picked up the bat, walked over to the pitch and astounded us all with her ability despite her double vision and having just completed week six of radiation.
The main event this weekend was actually supposed to be James and Patrick going to the footy. I have been very mindful that even though they’ve been able to stay at home in their own space during all of this they have still been very displaced and thus I wanted to arrange something special for them. They had been given tickets to the MCG on Saturday night and each took some friends on the (Warrnambool Essendon Supporter) bus down to watch the match. The excitement leading up to the departure on Saturday afternoon was almost unbearable. For Patrick going to watch Essendon was just bliss, but for all of them they were equally excited about 6 hours on a bus with mates and arriving home at 2.00am.
Last week Pippa had some special visitors from the west – one bearing a task of naming some future greyhound champions which Pippa aptly did, the other (my sister) living in our apartment and bearing personal training sessions for me at every opportunity. It became harder as the week went on to reach up to close the curtains every night!
Thursday saw Pippa fitted with some glasses containing stick on prisms to try and see if we can encourage a bit of movement from her left eye. It’s a guessing game really as the extent of the nerve damage and thus whether there is to be any recovery at all is still unknown, but even trying to teach the brain to talk to the nerves again is worthwhile. Although watching her hit a cricket ball and you wouldn’t even know there was any problem with her eyes at all! Walking through the hospital she was lucky enough to meet a celebrity……….the Dulux Dog!!!
A visit from cousins earlier in the week meant games, lunch in the park and the girls got to join in on some Taylor Swift jamming in music therapy.
Happy Fathers Day Tony
Side on, Elbow square, eye on the ball……
The Dulux Dog
Where’s Jara?
There’s Jara
Games & Ice Cream
Pippa Rea 