Virginia Rea

Coping with Chemo

by Virginia Rea

Pippa’s 12 month chemo cycle is supposed to be 5 days on, 3 weeks off starting every 4th Monday. The late drop of bloods in the 4th week of the cycle however has meant that this has not been the case and with each cycle we have had to wait until Pippa’s blood test results are at a level where it is safe for her to receive chemotherapy. The outcome of this though is that it has made her behind on her 12 month, 4 weekly cycle and thus, this is why her doctor is adjusting her doses to try and enable the chemo to be taken monthly.

This of course is all written in sand anyway and lead by Pippa in how she responds and copes with the chemo and results of current and future MRIs. Thus, we are zig-zagging along learning as we go with not really any guide book to show us the way. But that’s OK we seem to be managing quite well.

The first day of Pippa’s last cycle was the second last day of 2013. After that night I was definitely not looking forward to any form of New Year celebration at all. I gave Pippa the 2 (new levels of) doses of chemo and within 1-2 hours she was in all sorts of pain and discomfort along with awful waves of nausea. Needless to say, Taylor Swift and heat packs were called upon. Her body was aching and he tummy was twisting in knots. I could see the hurt in her eyes. She was exhausted from the day anyway so curled up in a ball while Taylor Swift sang her to sleep but she tossed and turned all night.

The next day I decided that I would have to resort to using the really strong painkillers I have in case the side affects of chemo become unbearable. Pippa is so strong; she didn’t want them on the first night but I couldn’t watch her writhing like that again. We had stayed in Melbourne due to our long day at the hospital and driving back I thought like I always do. (A lot of thinking is done in the car while Pippa sleeps. ) I hadn’t been expecting the pain to be so extreme the first night and wondered what I could do to help. I decided to put in place a routine for the next night. I knew that once we need to use the painkillers we have reached a threshold so to speak and there is no margin for adjustment in treatment if her doctor needs to do so.

Day 2 of the cycle and at 4.45 I gave Pippa her first dose of chemo, at 5.15, her second, at 5.45 we ate a healthy dinner of protein and vegetables. After dinner she had a deep, warm bath. Pippa then stepped out of the bath and onto a massage table for a 45minute massage and then into bed. This meticulous routine was followed for the remainder of the chemo that week and Pippa did not have even a hint of pain. Most mornings she woke with a sore belly, but that has been normal and even continues for a few days after she finishes the chemo. That pain is easily fixed with a heat pack.

Having been able to cope with the different dose of chemo in this way means we are not at our maximum and if we need to get more aggressive the room is there to do so. The pain killers are still up my sleeve, I’m not afraid to use them but I am fully aware of what I am dealing with. Pippa is taking it in her stride and by me changing the way I help her do that we are still well and truly on the front foot. Hopefully we can manage the next cycle in the same way.

Massage

Dinner – simple and healthy

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Sorry, No Pic of an MRI……..

by Virginia Rea

A full day at hospital today also included an MRI that we had not told anyone about. I have quickly learnt that keeping a poker face and holding MRI appointments close to my chest is a much simpler way to deal with the anticipation. Unfortunately, it also seems to bring secret tears as I sit through the scan.

The result however, has proved worth it. Whilst reading an MRI like this takes many weeks of intricate comparison to the previous scans, Pippa’s oncologist was very keen to have an “unqualified” look for himself. He is happy and can see some positive signs in the pictures so far. This at last (after 5 and a half months of surgery and treatment) matches something solid and medical on the inside with what we see on the outside. It also, I imagine, motivates and confirms for him that despite the length, the twists and turns and the intersections without directionsthe road he is following is perhaps the right one.

I should have taken a photo of Pippa in the MRI tunnel to placate my mother who likes to see photos on every blog. Better still, I should have taken a sound recording of the most boring 45 minutes I always have to sit and ‘vibrate’ my way through whilst Pippa gets to watch a movie. I didn’t. I thought instead about my grandmother, Nellie, and secretly thanked my cousin who recently reminded me that her strength is passed through all of us and she sees it so clearly in Pippa and I. Then I shed a few tears.

Now, I’m drinking bubbles and Pippa’s celebrating with another, in some ways slightly stronger and more aggresive than previously, course of chemotherapy.

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A Very Special Christmas

by Virginia Rea

No chemo this week again because of low blood test results meant that Pippa could enjoy Christmas Day and eat anything she liked! Chocolate Mousse for dessert is exactly what she ordered!

Pippa has decided that she would like to write this blog after having a lovely Christmas day with friends and family……….

This fine Christmas day we were up very early looking for our presents from Santa. We ended up finding them outside. Mine was under my tree. I got a dream catcher and also a very adorable bunny rabbit. We found out the rabbit was a boy and called him Nibbles. Patrick got a surfboard which he was very exited about. He had his first trial this afternoon when we went to the beach. And James got a Garmin running watch which he loved too.

We had 13 people coming for lunch they were Kylie, Jp, Ana, Armelle, Brian, Jo, Pep, Simon, Steph, Lachie, Georgia, Anne (Nan) and Tony. For lunch we had salad, ham, potatoes, seafood and lamb cutlets.

While we were having lunch mum made an anoucement to think about all the children who have to spend Christmas in the hospital because I was feeling very sad for them and hoping that they would still have a fun Christmas. Anne (Nan) made some delicious fruit punch.

After lunch Patrick ran the “Kris Kringle” it was only for the adults. You had to role a dice then what ever number it landed on either from 2-12 there was something you had to do. When the kids got their presents I got a book and bop it XT.

It was very hot outside so we decided to play inside. First we played connect 4. Once Lachie, Steph, Georgia, Simon and Pep had gone Armelle and I played a game. Then Ana came in and wanted to play with us. Later Patrick came in and he decided he would play too. A little later James came in then it was getting too squashed in my room so we went to the playroom. Patrick and James went because they had to do something. So Ana, Armelle and I did some magic tricks. Then Ana and Armelle had to go home.

I had a great Christmas day with all my family and friends.

My Christmas Present from Santa

I set the table

A Special Christmas Lunch

My Family at Christmas Time

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Taylor Swift

by Virginia Rea

When I was very first pregnant with James 14 years ago I was told by a friend your children will take you to your highest highs and your lowest lows but they are the most wonderful thing that will ever happen to you. I had no idea how extreme these highs and lows would be and how right he was.

Yesterday was a highly anticipated day as we were going to the Taylor Swift ‘Red’ Concert and Pippa was a lucky girl; one of four little girls chosen by Challenge to meet Taylor.

A red dress and a red flower hairpiece were arranged. A little bracelet was made by a friend as a gift – one for Pippa and one for Taylor. An autograph book and pen were on hand. All was set, what a day it was going to be!

We woke in the morning to a bit of blood smeared across Pippa’s face and a slight blood nose – James wondered if Pippa was perhaps going a little too far with the Red theme!

We drove to the RCH with ice and tissues. Blood tests were done and an emergency blood platelet transfusion was ordered. Pippa was not pale and lethargic, she was literally running around the hospital whilst we were waiting. The nurses and doctors knew about the date with Taylor and explained to Pippa she needed to have safe blood to be able to meet her.

Plans were changed and we got ready for the concert in the emergency department. There was a point were I didn’t know if we would make it in time and if we would would still be able to meet her. Challenge were so supportive and communicated everything with Taylor’s management to please still let Pippa come to meet her

The hospital rushed through the transfusion to as fast as it could go. We were late but Taylor waited for Pippa and what a beautiful time it was. Special cuddles with a world superstar. Taylor told Pippa how gorgeous she looked in her dress and how pretty the yellow strap on the bracelet was (Pippa’s new favourite colour). Pippa was so happy. I, on the other hand, was still pulling myself together just from getting there and wondering how much can one mother bear?

The concert was an amazing spectacle and every song was sung along to. Taylor has been on this journey with us from the start. Her songs have been sung through the highs and the lows. She can get rid of nausea and now also is capable of making blood transfusions bearable.

What concert, what a superstar, what a girl….peaks and troughs; what a day!

Nose plugged and ice on, looking good for Taylor Swift

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A Christmas Carnival

by Virginia Rea

I remind my children that if Pippa hadn’t developed a tumour in her brain there would be many opportunities we would have otherwise never experienced. To take these opportunities and embed them in our family’s memory is the silver lining I compel myself to grasp onto during this time of trepidation.

One of these opportunities was our first experience in attending an organised event for families of children with cancer. It was the Challenge Christmas Party.

In all honesty, I was nervous and hesitant. There were times leading up to Saturday when I wished I had not committed to going or I could come up with an excuse to cancel our attendance. I think subconsciously I was expecting to see signs up around many of the rides saying something along the lines of, “If your child has a tumour in her brain please don’t let her go on this ride……or this ride……..or that ride……….”

I think I was also expecting that I was going to be surrounded by “sick” looking children. Pippa doesn’t look remotely sick and I was struggling thinking I would be placing us in a psychological space we don’t need to be in at the moment and potentially taking away our positive outlook.

How wrong I was!

Our expectations were indeed exceeded. The carnival rides were numerous – as were the screams of excitement and terror! Food, drink and ice cream were all in abundance. Smiles were spread across the faces of children and parents everywhere and I certainly couldn’t tell which children had cancer and which ones didn’t. Nor, I realised later, did the thought even enter my mind to look. There were no ride police checking what “type of cancer” Pippa had before allowing her on. Instead, there was freedom to run, laugh, eat what you like, drink what you like and be totally ordinary in an extraordinary environment that every child dreams of.

The day ended with incredibly generous Christmas presents and my children begging me to promise them we can go again next year.

Thank you Challenge for an awesome kick-off to the Christmas season and for showing me that we can participate in these type of events with ease. (And rather handy that her neurosurgeon gave her the OK to do summersaults and cartwheels again the day before!)