We could never have been prepared for what is unfolding before us. My sister and our little Tom have to live between the Royal Children’s hospital and Ronald McDonald House for the next 10 months.
This situation is compounded by the fact that the weekend Tom was diagnosed his family had just moved to Mildura. This meant that my sister and her partner were between employment and had no access to sick leave.
My brother in law and sister will now be separated for 10 months. This alone would be challenging enough but my sister is also separated from her 8 and 5 year old who have both started a new school and are trying to make new friends.
Another compounding factor is my sister can’t work for 10 months as Tom needs 24/7 care – monitoring, medication, treatments, weekly lumbar punctures and chemotherapy – just to name a few. Daily she is witnessing the physical changes of hair loss, weight loss, fragility, swollen face, head and tummy. The list goes on. Some days he is hardly recognisable from the little boy we knew even one month ago.
Our parents, Tom’s grandparents, are between Mildura assisting with the kids and the Royal Children’s Hospital/Ronald McDonald House to provide respite for my sister. This requires a long journey on the roads which makes us all anxious. Mildura is too far for my sister to visit for a weekend so we are trying to find ways for her to go home for a few days at a time. It all depends on Tom though and we are taking it week by week at this stage.
Our situation is not unique. Many families are facing trauma with childhood illness. My heart races the moment I step through the doors of the Royal Children Hospital and thunders in my ears as I get closer to the Kookaburra (cancer) ward. A myriad of emotions impact all at once, that results in feeling overwhelmed and helpless.
Surrounded by the families at the Royal Children’s Hospital and Ronald McDonald House, seeing my sister at the coalface day in and day out and seeing my parents stretching themselves to be in all places at once – I had to find a way to help.
So I have decided it is time to shave my head and raise some money for Tom and all those other sick kids. For all the charities, volunteers and strangers we don’t see that make life bearable for Tom.
My hair will be donated to Variety Children’s charity ‘Hair for Heart’ program. Variety raises money from the sale of the hair, which is used to make wigs for sick children.
I was going to do shave for a cure which is a great cause. However, so many organisations – Starlight, Ronald McDonald House, Red Kite and the Leukaemia Foundation (just to name a few) have all been instrumental in helping us. This way we can donate to them all.
With your kind assistance we could get my sister some respite and enable her to see her family, ensure her partner can visit Tom and give him a cuddle, relieve our parents of the financial stress of time on the road and give back to the charities and organisations that work tirelessly for our Tom.
Tom and our family would so appreciate your help. Any donation no matter how small.
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