Kids with Cancer Foundation - Arlo's story

By Kids With Cancer Foundation (Aust)

Kids with Cancer Foundation

Kids with Cancer Foundation was founded in 1998 and has since worked extremely hard to provide financial assistance to families that have a child between the ages of birth and 12yo, that have been diagnosed with cancer.  All of us have been touched in some way or other by this horrible disease, but for innocent children to have to go through cancer treatment, it is just not fair.  Their journey, along with their family, is long and emotional.

Kids With Cancer is providing assistance to families and hospitals all over Australia.  We are a “Founding Patron” of Monash Children’s Cancer Centre, fund Social Worker positions, and have given over $25M to families and hospitals to cover research, equipment, clinicians and many more, thus far .For the families we help with everything from funeral assistance, gas, water, phone, mortgage, rent, car repairs, vet bills, toll fees, wheelchairs, grocery vouchers, petrol vouchers, car rego, car insurance, home insurance, school fees, lodge accommodation, flights for grandparents……. The list is never ending.  If these families have a bill and they can’t pay it, we can help!

Families are under so much pressure and stress, their income is reduced, they lose their jobs, their travel and living expenses increase, the relationships breakdown.  It is unimaginable knowing what these families go through.  If we can help take some of that stress away, just give them something less to worry about, then surely that’s a good thing!

 

Arlo’s story as told by his father...

On 30 November 2017 our 18 month old son (Arlo) was diagnosed with Acute Lymphoblastic Leukaemia (ALL). Prior to this, my naive and sheltered outlook on the world meant that I did not even know what the word Oncology meant. Now I know more than I ever wanted to know.

I know that at Brisbane Children’s Hospital there is a world dedicated to children’s Oncology and people who live in this world everyday know it simply as “11B”. 11B is the ward for all paediatric oncology including a BMT (Bone Marrow Transplant) wing. 11B has dedicated Oncologists, Fellows, Registrars, doctors, nurses, cleaners, caterers and many more who help families like ours with sincere compassion and kindness. 11B is a ward where immunity is so incredibly low that a cough is a danger and a banana needs to be thoroughly wiped and cleaned before being given to a BMT patient. Clothes and sheets need to be washed twice and in hot water. 11B is filled with an unspoken sorrow hidden well behind smiles of hope and faith. In 11B you hear whispers of the angel that "got his/her wings”. 11B is where no one ever wants to find themselves. It has been a 20 month roller coaster ride of ups and downs and reflections of just how lucky we are.

Although we are now in a better headspace and Arlo is currently in remission (although on chemotherapy treatment until February 2021), we still take life a day at a time. Memories of what we have witnessed our child (and other children) go through are never forgotten.

Arlo may look healthy to the outside world, however there are still a lot of medicines, treatments and procedures going on behind closed doors that people don’t realise. Arlo has missed a year of childhood and has had more needles, blood tests, chemicals pumped into his tiny body and more general anaesthesia than most will have in a lifetime. He still has a blood test every fortnight. He still has oral chemotherapy every night, IV chemotherapy once a month and intrathecal chemotherapy (injected into the cerebral fluid once every three months).

We wouldn’t have been able to get through this ongoing journey without the support of the local community & numerous charity organisations who have help us tremendously. Cancer is not just a battle for the individual in which it physically attacks, cancer attacks everything and everyone in its way. There are emotional, psychological, physical and financial pressures on parents, siblings and extended family members.

As a family we have been blessed to have had a somewhat easier journey than many we have met - a better prognosis, less surgery, less physical scars, less horrible side effects, less long-term side effects. Which is the reason I want to help families who are so unfortunate to face this life. I want to make people aware of the difficulties faced by so many families like mine. We weren’t a “paediatric cancer family” before diagnosis either. Kids aren’t meant to get sick… They just shouldn’t.

Note: The views and advice expressed on this blog post are those of the author and are not representative of the Pregnancy Babies & Children's Expo.

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