Before Ruby's diagnosis she was just like any four year old girl. She attended preschool three days a week, had weekly swimming lessons and attended ballet class too.
Ruby has three big brothers - Max aged 11, Will aged 9 and Tommy aged 7 - they all play soccer for North Sydney United and love their baby sister. Ruby was our pink surprise after so much blue in the house! She was born 4 July 2011.
The day before Ruby was diagnosed we were at nippers at Balmoral. Ruby and her brothers are all Balmoral Nippers.
She was a bit tired - she had slept 12 hours the night before. She had a few bruises on her leg and had a nose bleed the week before. Nothing was really that alarming but we thought since Ruby's brother Will had been low in iron at the age of two and had required iron tablets we would get a blood test.
Monday morning Ruby went to preschool as usual but we were called pretty soon after drop off to say she was unwell. Her dad Ed picked her up and took her straight to our GP for the blood test we had talked about.
That evening our GP knocked on our door, it was very strange to see her standing there. She looked concerned and told me that we had to go to Randwick Children's hospital immediately, they were expecting us, both Ed and I knew it was not good.
In emergency we were greeted with sad eyes. We were asked if our GP had mentioned a word, the word we now know to be Leukaemia.
Within a few hours we were told Ruby had Acute Lymphoblastic Leukaemia (ALL) and we were being admitted to start treatment that night.
Our 'perfect' world fell apart. Devastation hit!
Ruby's treatment involves 6-8 months of intense chemotherapy with 18 months of maintenance.
We are now in the second phase of treatment but have hit a few 'bumps' along the way with infections because Ruby’s immune system is non-existent – her current immunity levels are 0.0.
An infection will cause a spike in temperature, anything over 38 means a rush to emergency, it can be quite serious for a child with Leukaemia. Ruby spiked her first temperature early April. On this particular day in April Ed was busy with the boys ferrying them around to soccer matches, so my mum picked Ruby and I up and we headed to the emergency department at Sydney Children's hospital.
We were seen immediately and isolated in our room. A few hours in my mum became breathless; she was having a heart attack. The team at the hospital acted so quickly and mum was whisked away to neighbouring Prince of Wales hospital whilst Ruby and I stayed in isolation colouring in. It was a very traumatic time. Ed arrived quickly after dropping our boys with friends so that I could go and be with mum.
I could never have imagined that I would find myself in the position of being in an emergency department having both my child with Leukaemia and my mother suffering from a Heart Attack at the same time.
The hospital visit in early April saw us all in hospital for more than a week, Ed and I celebrated our 12 year anniversary in hospital!
The current Bump we are experiencing was caused by Ruby experience another temperature spike. We rushed to hospital at 3am one morning, where we have been for the last 4 weeks whilst Ruby fights an infection within. As the infection was in her port – a device embedded under her skin near her chest and connected to her heart that administers chemotherapy, this had to be removed in an operation at 10pm one evening. After that operation Ruby and I were in an isolation room for over 2 weeks. Whilst the Doctors are treating Ruby for this infection they need to pause her treatment for the Leukaemia, she cannot progress with her Chemotherapy treatment. At this stage we are unsure how long this hospital stay will be, it could be at least another 2 weeks until the infection is under control, her port reinserted and treatment for the Leukaemia re commences.
During this second stay my mum has had another mini heart attack; she spent a week in hospital, but is now thankfully home, taking it easy recovering. Mum has big support over the years, she has helped with the kids hugely over the years, everything from cooking to babysitting to the coordination of after school activities and just being there for us.
The other side to all of this is Ruby’s 3 older brothers who love their little sister dearly, the boys visit Ruby and I in hospital every chance they can.
Since diagnosis day (14 March 2016) we have been in and out of hospital. Our spirits are high and guided by our incredible girl who is so brave and courageous and can always manage a smile. Ruby has a “Bead of Courage Necklace” which is made up of beads of different colours, each colour bead represents a different treatment milestone in her treatment for Leukaemia, for example Ruby gets a red bead for every blood transfusion, 8 weeks into her journey her necklace already has 18 red beads and over 240 beads altogether on her necklace.
We give thanks and recognition to the nursing staff and doctors who are wonderful. The charities around us - Starlight, Redkite, and Clown doctors- are what keep us going, as well as the play therapists that keep us entertained. We feel like we are in the best hands possible and are thankful for the care, love and support we are receiving at Randwick Children's Hospital.
Every day is a new day.
Our friends are helping us get through and we are eternally grateful.
Thank you.
Ed, Steph, Max, Will, Tommy & Ruby
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