Libby’s Story: our journey with Leukaemia {guest post}

To be honest, we haven’t spent a great deal of time with other ‘oncology families’ but I remember Rochelle and I sharing those ‘hey, I know what you’re going through’ smiles when we passed on treatment days at the Royal Children’s Hospital. Then, one day, both Libby and Sam were the very lucky recipients of bikes through Camp Quality – so we officially met at the bike presentation and our friendship began. Turns out, Libby and Sam were diagnosed within a few weeks of each other so we still often see them up at the hospital, even though our appointments are now far less frequent. I am so thankful to Libby’s beautiful mum, Rochelle, for sharing their story with us today. Annie x 

Libby was a normal two and half year old, attending day care and never any more sick than getting the odd cold.

One night, as I was helping her out of the bath, she complained of a sore arm. However, with no sign of a bruise, swelling or cut we thought she might have knocked it and so went about our normal routine.

The next day I took Libby’s hand to cross the road when she complained, once again, that her arm was sore. I thought this was strange, but my husband and I put it down to being a little sore or trying something different to get our attention.

Two days passed before Libby started complaining of a sore knee. I dropped her off at day care and called an hour later to see how she was going. Day care informed me Libby hadn’t moved off a bean bag and was complaining of a sore knee. I knew at this point something was really not right, so I called my doctors surgery and organised an appointment.

The next day the doctor said that due to a recent chest infection and cough and now the complaint of a sore arm and knee, she would like to do a blood test and knee x-ray.

I questioned what she was testing for and her response was, “Don’t be alarmed but I am doing a full blood count to rule out Leukaemia – please know I have had one case in 20 years, but it is important this is done. If you give me your mobile number I will call you as soon as the results are in, but please go straight away now and have these done”.

To say I was scared and emotional would be an understatement. Libby had never been to a hospital, never seen a nurse and had never really been sick. I called my husband, Aaron, who came straight away.

The blood test was completed at midday, the x-ray just after 1pm and we were home at approximately 2:45pm. Aaron had to duck back to work and I waited at home with Libby to hear from the doctor; I was afraid, but positive and all the while thinking it was probably just a virus.

At just after 3pm the doctor called. It was a call that will haunt me as she said, “I’m so sorry, but it seems Libby has Leukaemia. You need to pack a bag and go straight to the Royal Brisbane Children’s Hospital. I will let them know you are coming”.

I don’t remember too much about the day after that, apart from what has followed.

Libby initially spent 10 days in hospital. We were advised that treatment for a girl her age for Acute Lymphoblastic Leukaemia was “two and a bit” years.

Treatment commenced with a bone marrow aspirate and the insertion of a port-a-cath. She endured intensive chemotherapy for the first 10 months with frequent lumber punctures under anaesthesia, constant IV chemotherapy (all of which have terrible side effects), steroids, a blood transfusion and regular oral antibiotics. She has now moved to the maintenance phase of her protocol which consists of monthly IV chemotherapy at the Lady Cilento Children’s Hospital with oral chemotherapy, antibiotics and steroids administered at home.

Her first block of steroid treatment lasted 28 days and caused her to put on 5.5kgs in just 14 days; struggling to get up off the floor and walk properly, to ravenous hunger and huge consumption of food. She has spent many a time feeling sick, vomiting and so exhausted that all she can do is sleep.

As chemotherapy affects the immune system, we have to be careful and try to protect her from infection. Sadly, as a result, she has missed numerous birthday parties, play dates with friends, family events and only began pre-prep at the start of this year. Unfortunately, Libby has struggled being immune-suppressed and has suffered greatly from infection throughout her treatment, since being diagnosed with a lung disease.

Despite what she has been through – multiple hospital admissions for illness, long nights in emergency, weeks of IV antibiotics, extensive chemotherapy, months of oral antibiotics, many hours spent at hospital for check-ups, nose swabs, blood tests, urine tests, scans, x-rays and two bronchoscopies – she copes incredibly well.

This experience has taught us to appreciate the small things in life and to cherish and treasure the beautiful memories we create. We have learnt to be patient, to take one day at a time and treat each day as a new day. We have also learnt to put our upmost trust in professionals, while at the same time advocating for our little girl and fighting for what we believe is in the best interests of her health and well-being.

We have struggled with the inability to control any part of this process, but in turn have chosen to educate ourselves – learning about what her blood results mean, what the disease is and how it affects her, what side effects can occur from the chemotherapy, what her lung issue is and what this means for her in the future.

There have been countless sleepless nights, bucket loads of tears and constant moments of fear, yet we have been surrounded by so much love, generosity and support.

We have had amazing support from family, good friends, our employers, hospital staff and professionals and the wonderful charities including Red Kite, Leukaemia Foundation and Camp Quality. We cannot thank these people enough for helping our family and being there for us in a time of great need. We will be eternally grateful to all who have travelled this journey so far with us. We hope to one day give back to the community of people who have wrapped their arms around us and do more to help families going through similar circumstances.

We have also met some wonderful people and developed some very beautiful friendships. Some of the most emotional conversations, yet the biggest laughs, have been shared with other parents experiencing the same or similar situations to us.

The oncology community is made up of incredible people who help guide, listen, advise and support one another. Being able to share your deepest thoughts and feelings with others dealing with the same difficulties, struggles and achievements is invaluable. We have embraced the opportunity to be a part of this group in the hope we will be able to help others and feel we are not alone.

We want to help support the charities who are trying so desperately to raise awareness about kids with cancer and who are courageously fighting this battle each day on behalf of all oncology families. We want people to know that this could happen to them… Libby was a normal 2.5 year old; we were a normal family and lived a very normal life. Australia needs more funding, more research and more information on childhood cancers. We need to give our professionals more resources and support so they can continue to save more lives of our future generations.

Libby has been in remission since November 2013 and is due to finish her current treatment in December 2015. We have high hopes that she will continue to beat this terrible disease and become the beautiful person that we know she is destined to be. She is an articulate little girl, who communicates well and loves dollies and soft toys!

She relishes being a child and we treasure and appreciate the times when Libby is well and we can all do things together – nothing makes us happier than hearing her laugh, seeing her eyes light up, listening to her chatting and just enjoying life for what it is as a now four year old. As parents, we want only the very best for our little girl and will endeavour to ensure her life is as complete as possible. We will remain positive, have faith and face the future together.

Rochelle, Aaron and Libby’s chosen charity for September is Scott’s Army Foundation, set up in honour of a fellow patient at the Brisbane hospital who passed away from Osteosarcoma at the tender age of 15. They would love if you could make a donation, no matter how small, and carry on Scott’s legacy by helping other families who are facing Childhood Cancer. The bank details are at the base of this page. Thank you x

*All photographs supplied by Libby’s family.