After an huge day in recovery we eventually made it to a ward bed and Pippa has now settled comfortably and pain free. Her little chemo body just needed a bit longer than normal to get through all the surgery medication.
Winter Blues
A friend of mine once told me she thought the “Winter Blues” were just a myth until she met me.
I’m not a cold weather person. I don’t like layers of clothes; I am much happier in shorts and a t-shirt with the sun shining warm on my skin.
This week has seen Pippa complete her 8th cycle of chemotherapy. She only had one uncomfortable night on day 2 but we managed that with some stomach cramping medication and our normal chemo routine of massage, healthy food, baths and of course, cuddles from not only me but James and Patrick as well.
I was perhaps exaggerating how cold I was during the southern WA cold spell a couple of weeks ago – I’m now feeling that was warmish……. This week Victoria has seen the weather change to real winter weather and along with it (and during the chemo cycle) came a cough for Pippa. It started small and only at night time. It wasn’t bothering her much but listening to it I knew it was going to become nasty. I watched and waited. On Monday it turned and she couldn’t stop coughing. I knew that based on the last cough she would end up in hospital but wasn’t sure whether I was supposed to wait for that to happen or if there was something I could actually do.
Yet again I rang the Royal Children’s Hospital Oncology department for help and advice and then off we went to visit the GP. My suspicions were confirmed and the GP gave us some antibiotics in the hope that we were just enough ahead of the infection to help her compromised immune system fight it before it got the better of her.
The first night on anti biotics I spent popping ice into her mouth so she could sleep. The second night I gave her strong pain relief which also acts as a cough suppressant because she has pulled all her stomach muscles from coughing. So far the anti biotics have supported her and her immune system is holding up instead of shutting down. She’s happy enough within herself but she can’t go to school. We still went to dancing yesterday which in itself was good medicine – some lovely light movement to some beautiful music that of course brought an emotional mix of tears, smiles and laughs (to everyone but Pippa, she’s just the smiles and laughs part).
Fingers crossed Pippa and her immune system can hang on and win this mini fight………
This is going to be the longest bout of the “Winter Blues” I have ever had. Summer with its warming, happy sunshine can’t come quickly enough as far as I’m concerned.
Opportunities & Memories
With Pippa being so well the past few cycles I decided it was a good opportunity to travel west and visit my sister and her family in WA. Pippa’s oncologist agreed and gave us medical clearance to leave shortly after her last chemo cycle. Things don’t always run smoothly though and for the 2 days prior to us flying out Pippa started some random vomits. Not uncommon for oncology patients but most certainly uncommon for Pippa. Advice from her oncologist was that the vomit cycle needed to be quickly broken before it set in and became a habit. Not good. His advice and preventative actions worked and we headed off vomit free (always a good option!)
Nibbles is good to cuddle after vomits
It was so ridiculously cold and wet in Mandura that we had packed everything from beanies to bikinis! Beanies were needed when we camped out one night to watch bilbies in the cold and the rain. Pippa also spent a day helping Linda look after the tiniest little 2 week old greyhound puppies. A long day but she loved every minute of being with all the dogs and helping out.
Getting the torch ready
Bilby
Helping Linda with cute little greyhound pups
Another Puppy!
Cousin Love a
Cousin Love b
Pippa & Chloe
Pippa & Mel
Unusual for me, I didn’t mind about the cold because we were there to spend fun times with family. The other reason I didn’t mind about the cold weather in Mandurah was because we had decided to take an opportunity and create some memories – we were heading to Broome for a week! 7 days of red dirt and beach in 34 degrees! We were lucky to have a beautiful house complete with a pool to base ourselves from, a 4wd to keep James happy and lots of things to do:
We visited a pearl farm and learnt how pearls are crafted;
A Pearl in the Oyster
A $2,910 Pearl Necklace
We watched a movie at the historic 90 year old outdoor cinema (complete with jet taking off directly overhead halfway through);
Outdoor Cinema
We rode in a hovercraft to a rocky point where the red dirt meets the sea to see fossilised footprints of a Bracheosauraus;
Hovercraft
Fossilised Dinosaur Footprint
Standing in a Dinosaur Footprint
Where Dinosaurs Walked
We drove our 4wd into the Kimberley’s to walk through Windjana Gorge and wade through the dark caves of Tunnel Creek. We saw freshwater crocodiles and beautiful cliff faces and Pippa and I shared a sand bar with a black headed python in the dark (absolutely, positively, no way was I stopping to take a photo of him with a flash in the dark!). Thanks for shining the torch so we could see him though (and not step on him) James! The wade out in the dark just wasn’t the same as the wade in – what else was in the water??? – it could have only made it to the sandbar by swimming! It took a long time for my heart reinstate itself back into my chest after that little experience! It was a 14 hour day which included driving through a lot of bumps and corrugations, sand, a water crossing and being on high alert for cattle on the road all the way back in the dusk and dark.
The famous Gibb River Road
Prison Boab Tree Near Derby
Walking through Windjana Gorge
Windjana Gorge
He looks like he’s smiling
Heading into Tunnel Creek
Tunnel Creek
A water crossing
Windjana Gorge in the Kimberley’s
And of course, what trip to Broome would not be complete without hours spent on magnificent Cable Beach? We rode camels swum, explored rockpools and watched sunsets………
Cable Beach Sunset
Splashing at Cable Beach
Low Tide
Rock Pools
First Day on Cable Beach
Riding camels on Cable Beach
What lovely memories of a beautiful week in Broome and how special to have fun with family as well.
3 Weeks of Being a Normal 10 Year Old
Pippa has just completed her 7th cycle of full strength chemotherapy (after having also had the 42 days straight of low dose in conjunction with radiation). 7th of I’m not really quite sure how many.
Between the last cycles Pippa had 3 weeks of being a normal 10 year old with no trips to hospital either planned or unplanned in between cycles and no pains or discomfort. She enjoyed the holidays, went to school, had plays and sleep overs with friends and made the most of everyday life. All with what seems like an almost complete smile across her face.
So normal were we that when we were due to go to Melbourne to the hospital ready to start the most recent cycle we both had trouble leaving. I seemed to wander around the house aimlessly for 2 hours! It was a beautiful sunny Sunday; Mothers Day in fact, and Pippa was playing James & Patrick. She came to me to say she didn’t want to drive to Melbourne and leave James and Patrick again. At the same point I found myself ironing James’ school tie (what??!!). We hugged. The stalling for 2 hours was just a feeble attempt at trying to put off the inevitable and not reenter the life we’d been able to ignore for the past 3 weeks (sort of).
Of course we made the trip down the highway. This time Pippa read her book out loud for 2 of the 3 hours. We went to the hospital on Monday, all was good, collected the medication and came home that night to start the chemo routine again. Like last time Pippa breezed through the week of treatment with no side affects.
Bowling with Laura
Sleepover Fun with Phoebe
Afternoon Tea with Nibbles
A feed of chocolate before going without during treatment!
A Happy Easter
The week before Easter was the second time Pippa has successfully made her 4 week chemo cycle. The continual adjustment to her medication seems to be right for the time being meaning her blood and her body’s processing of the toxicity of the drugs is finally as it should be. Whilst I still live day to day, for the first time in 10 months, whilst I can’t plan, I can at least think a little further ahead.
I didn’t think this girl could amaze me any more, yet last week she did it again. We were juggling treatment with school holidays, visitors and Easter. After another very long day at the hospital on the Monday we came home prepared for the gripping, horrible pain that seems to be the normal first 48 hours of treatment. Nothing! Not even a hint of pain! By Wednesday I asked her if maybe she thought there was a mistake and the capsules were perhaps empty and the syringe just filled with water??? She shot me a look and asked, “Do you want to taste this disgusting stuff?” No thanks!
Thus, we had a great school holidays and lots of fun with all our visitors.
This Easter was also our first Good Friday Appeal as a patient and a family of the Royal Children’s Hospital. That was hard for me. Every time I turned on the TV or opened the paper it was there. It’s hard enough living your own struggle without being constantly reminded. We put coins in the collection tins at all the traffic lights we drove through, Pippa and the boys went out to the street when the SES vehicle drove by and gave them a stash of money, but I didn’t want to hear or see anything.
The Royal Children’s Hospital is amazing; the staff, nurses, doctors, specialists and volunteers are incredible. I wish the only way I knew that was from seeing the Good Friday Appeal on television. Instead I can’t walk through the foyer of that beautiful building without seeing someone I know.
In July last year I kissed my precious daughter goodbye and let her go in for massive and dangerous brain surgery and I have now entrusted her medical future to her oncologist. I know first hand the stories of that hospital and I am grateful every day for the skills and knowledge of the people at RCH who now form part of our daily lives.
In Pippa’s words, the best thing in the world would be that no child ever had to go to the Royal Children’s Hospital and that every child could live a normal life. Unfortunately, that’s not going to happen, but at least we are so very lucky to have the Royal Children’s Hospital and all that it does for children.
Pippa and Zoe were good at going round in circles!
Chloe and Nibbles
Stacks On Beth!
There’s a koala in the tree and a leopard on Pippa’s coat!
Toasting Marshmallows
9 months in
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.
Pippa Rea 