Georgie’s Story: through Leukaemia and beyond {guest post}

I am pretty sure that I was still in the blur of post-Leukaemia diagnosis when I was first introduced to Angela through mutual friends. But I am so thankful for the hope she offered me in those early days, and the reassurance that there could be a life after Leukaemia. And I am so thankful to Angela for sharing their family’s story here to offer hope to other families too. Thank you xx

Georgie was a very vivacious four year old when she was diagnosed with Leukaemia in December 2006. She went to daycare two days a week whilst I worked and the rest of the time played with her little brother, Nate, who was 20 months at the time.

One day she came down with a virus. I knew she was quite unwell but, like most viruses that came and went, I presumed it would last a day or two and she would be back to her healthy self.

After a few days she hadn’t been able to keep down any food or fluids and I knew she was dehydrated. As a Registered Nurse, I didn’t  panic when the kids were sick but I took her the Royal Children’s hospital thinking they would most likely rehydrate her with IV fluids and discharge her after a few hours. They said “yes, she’ll need IV fluids and then you guys can probably go home.” But there was something wrong with her blood results and she had to be admitted – her neutrophils were very low. They explained that this was a toxic shift relating to the virus she had but the rest of her results were within normal limits. I thought of Leukaemia straight away but was reassured many times that she just had a virus.

Four days later, after daily blood tests and Georgie not getting any better, the doctors approached us and said that her results every day had gotten worse and slowly her haemoglobin and platelet count had drifted down too. They told me that there was something wrong with her bone marrow and they needed to do an aspirate.

The next day when my husband was carrying her through the Day Oncology unit to the Theatre to do the procedure, I saw all of the sick children. Some were bald, some were not. There were even a few bald fairies. All I could think was ‘we don’t belong here.’ I was in total denial. Later, my husband Darren told me that he had thought that this was the beginning of a new journey for us.

To say we were devastated when we received her diagnosis was an understatement.

When you have a child, you never think that their name and cancer is going to be said in the same sentence. Even though this occurred nine years ago, I’m crying whilst writing this as it still brings those raw and desperate emotions to the surface.

Over the proceeding days and weeks we clung to the statistics and the advice of Georgie’s oncologist. We tried to create a bubble of normalcy at home for her as she was discharged two days before Christmas. That was, and still is, the only Christmas Georgie didn’t open all of her presents.

Six weeks after Georgie was diagnosed, we were given the news by her doctor that she could start prep the following week with all of the other children. We had debated about whether to send her to school  but it was the best thing we could have done. She thrived at school and felt like a normal little girl, just with no hair!  She did struggle during the one week every month that she was on high dose steroids. She couldn’t  go to school during that time as she became a different child – sad, hopeless and inconsolable.

Most of the weeks during treatment was spent taking Georgie and her brother on exciting adventures in order distract her from herself. Some of the time it worked but as we got into the second year of treatment we were desperate with how to manage the side effects of the steroids on our usually pleasant little girl.  The suggestion to stop the steroids was not an option for us. We felt that if we didn’t complete the required protocol we would never forgive ourselves if she relapsed. No, we would pull together and keep going.

That decision was soon taken out of our hands when Georgie was diagnosed with Avascular Necrosis (AVN – death of bone tissue) in her legs as a direct result of the high dose steroids. The debilitating pain in her legs now had a name. It was devastating again for us as we didn’t know if she would end up in a wheelchair or if her bones would regenerate. She was taken off the steroids immediately. Thankfully, the AVN resolved itself with removal of steroids. She was lucky that the lesions didn’t involve her growth plates and the pain resolved over a few months.

During her treatment we tried as a family to continue life as ‘normal’.

We spent a lot of time having fun trying to enjoy life create good memories for our little family. We all love the snow and, even during treatment, we took Georgie skiing to Mt Hotham. She loved it and always felt free in the mountains, and she continues to love skiing to this day. “This is livin’,” she says when we all go skiing together.

One of the days that stands out in my mind was her last day of IV chemotherapy, in February 2009. Because of the way her protocol fell, she finished with a treatment day that included a lumbar puncture and intrathecal methotrexate (chemotherapy inserted into the spine). Over the Christmas Holidays, she had required two blood transfusions. Her Oncologist had been away on holidays at the time. So on her last day we were all very excited, taking photos for her last ‘visit.’ I mentioned to the doctor that she needed two transfusions over the holidays but she was fine now. Her oncologist said “I’d like to talk to you about that, I think she might have low level disease….. we’ll do a bone marrow biopsy whilst she’s under for the Lumbar Puncture.”

To this day, I still remember the exact words she said. I felt like I had been punched in the stomach. Darren and I couldn’t believe that after ‘doing everything right’ for the past two and a bit years she might have relapsed! Those nine hours of waiting until we were called at home with the results seemed even worse than the original diagnosis.

But she got the all clear. Her bone marrow was flat and had simply had enough. Her little body could not take any more chemotherapy. We cried, we laughed we hugged. She had no idea what all of the fuss was about!

At the end of her treatment I fell apart. I think we had kept it together for so long that, after she finished, I allowed myself to let go. We had ploughed through for over two years. A few months after she had finished treatment, I contacted The Leukaemia Foundation for a name of a therapist who might specialise in this area. Not really knowing what they did (thinking they just provided accommodation for out of town families etc) I didn’t make contact when she was diagnosed. In hindsight, I really wish I had. That is the one piece of advice I would give other families – reach out for the support that is offered.

We were thankful for the support The Leukaemia Foundation offered us in various ways over the next few years. We finally felt as though we had ‘got it together’ and assimilated into normal life again!

It was at that time that we thought bringing a new baby into the family would be a great idea. Through Georgie’s journey, the meaning and importance of family was reiterated time and time again. It was family who provided our main support during treatment and I don’t know how we would have coped without both sets of parents, who were always ready to drop everything to help out if and when needed. So we decided to add to ours!

Now six years post treatment, Georgie is a lovely 13 year old girl who started high school this year. Her younger brothers are now 10 and five. Like any 13 year old girl, she wishes she didn’t have younger brothers whose main job in life seems to be to annoy her, but deep down she knows she wouldn’t have it any other way!

For the past six months she has had very painful hips, knees and ankles to the point that she has had to give up her beloved competitive cheerleading. All blood tests, MRIs and scans have  come back as normal and they don’t think it’s related to the AVN.  We are still investigating and she is currently seeing a paediatric orthopaedic specialist. Georgie now concentrates on art classes and has just informed me she wants to learn archery!

Do we worry? YES! We still worry, we will worry forever BUT it doesn’t consume us and we live life fully (or at least try to). We are like any other family in today’s world – always busy, but we try to remember what is important and to bring life back to basics … and, most importantly, family.

A lovely friend wrote a short story for Georgie as a way to remember and reflect on her journey. Another friend did a few illustrations to go with the book. (You can click here to read the words and see some of the images). My dream has always been to get it published and give it to newly diagnosed families. Whilst the story offers an explanation of leukaemia to children, it also offers hope.

And when a family is facing a devastating diagnosis, that is the one thing they need above all else. Hope.

Angela is married to Darren and is a busy mum to three children ~ Georgie 13, Nate 10 and Finn 5. Professionally, she works as a Registered Nurse in Day Oncology, which she loves. Angela tries to make the time a patient spends in Day Oncology as pleasant as possible, trying to create a relaxed atmosphere and alleviate some of their stress. She worked in oncology briefly prior to having children but a few years ago realised that through personal experience with her daughter’s illness, she could hopefully make a small difference in patients lives.

Angela has really appreciated the support that Camp Quality has offered their family through Georgie’s illness and beyond, and the organisation’s ability to recognise that cancer happens to the whole family. Angela and Georgie would love you to make a donation to Camp Quality and help to continue its valuable work in making ‘laughter the best medicine’ and including every family member in the fun they create. Every donation is valuable, no matter how small, and you can donate online by following this link: https://www.campquality.org.au/donate

* All photography supplied by family. Final photo by Libby Best Photography.