Help our little boy fight brain cancer

Dear Friends, Family and Wider Community,

My name is Dennis Jevdenijevic also known by many as DJ, I have a small family fiancé Zoe and three children Anakai, Zailey and Kealii. We are an indigenous family all born and raised in the Northern Territory with strong family links to the Pilbara Western Australia.

On Sunday the 17th of December 2023 our youngest son Kealii who at the time was 16 months old had a medical episode whilst we were out having a family day. This episode led to Kealii being admitted to Royal Darwin Hospital (RDH) for the night where we were informed his episode may have been a seizure. As a result of the episode he began to have a kinked neck tilting his head to his left side, we continued to follow up with further appointments at RDH over the following weeks.

On the 12th of January 2024 Kealii was required to attend an emergency MRI, This MRI demonstrated a posterior fossa tumour extending from the fourth ventricle.

Our family were rushed to Queensland Children’s Hospital with hope of surgical intervention.

Once at the Queensland Children’s Hospital and days of surgical planning. Zoe and I were informed that the tumour had wrapped around Kealii’s Brainstem and had began to drop into his spinal cord. Due to the tumour being in close proximity of his brain stem and some vital nerves attached to the brain stem there were serious risks associated to the surgery which were all risks we were willing to take helping our little boy.

On the 23rd of January 2024 Kealii underwent a craniotomy. After a long 9 hour operation we were informed that the surgery had went really well despite the tumours location the surgical team managed a gross total resection.

Kealii spent an additional 5 days in the paediatric intensive care unit (PICU) post surgery.

Following surgery and Kealii’s recovery in PICU. It was discovered due to the operation Kealii had his right side of face paralysed. (Eye, cheek and voice box). Kealii now has difficulty with not being able to close his right eye requiring eye drops be applied every 2 hours, difficulty swallowing choking on fluids and has a much lower voice tone and speech partially impaired.

Kealii remained in hospital for a period of time post surgery for rehabilitation, walking, eating, drinking and functional movement testing whilst we awaited the results of the tumour.

On 31st January 2024 the Tumour results were returned. Zoe and I had an appointment with the Oncology Dr. Where we were informed that the surgery couldn’t have went any better and that it was one of the best surgery outcomes he had seen in a long time considering the tumour’s location.

The tumour result returned as a Grade II Ependymoma we were informed that this particular tumour is renowned for returning and due to Kealii’s age and the fact the surgery went so well in being able to remove as much of the tumour they did we were provided with two options of radiation type treatment.

Once we had an understanding of what the tumour was and the grade of tumour Zoe and I had an appointment with Radiology to discuss our steps moving forward. The Dr of Radiology informed us of the risks likely associated with the two treatment options.

Stereo Tactic Treatment - Likely to cause deafness, Long term effects on short term memory and Long term effects on growth hormone.

Proton Therapy Treatment - Has potential of the same risks a stereo tactic treatment but at a much lower rate due to how accurate this type of therapy is there is less chance of damaging healthy brain tissue. This treatment is not offered in Australia and will require to travel to Florida USA.

A further CT/MRI scan was conducted on Kealii where comparative planning demonstrated there was a significant advantage with Proton Therapy for Kealii to have a better quality of life with a higher chance of cure rate and lower risks associated.

This costs for this treatment is in excess of $160,000USD this is not inclusive of flights or accommodation for the 3 months that Kealii is required to be in Florida for treatment.

The Queensland Children’s Hospital have applied for commonwealth assistance to get Kealii to Florida for this treatment to commence however it is subject to approval. If approved this funding will only cover one parent to travel with Kealii and the treatment cost. This process can take anywhere from 6 - 10 weeks before we find out if we have been approved or not.

Kealii is now 5 weeks post craniotomy and have been informed for our best opportunity of successful treatment he would have to start this treatment before he reaches 12 weeks post op which means we still may not know about approval or not prior to required time.

We have been asked if we can attempt to fund this treatment for the purpose we don’t get approval for commonwealth funding.

We aren’t usually a family to request support from friends and community like this but our little boy needs our help. Zoe was made redundant from her employment a week prior to us finding out Kealii had a brain tumour so we are currently dependant on a single income and want to keep our family together for this.

We are seeking any assistance we can to get Kealii and our family to Florida to start his treatment with the hope of curing his cancer and allowing him to continue living a quality life.