Skylah
2026 Recipient
Skylah’s story from her mum Jess:
Skylah's life hasn’t been easy. We are no strangers to hospital stays; we aren't even strangers to chemotherapy or surgery. Skylah has undergone a long list of medical procedures and diagnoses, but nothing could prepare us for the curve ball 2025 threw us... July 2025 was somewhat normal, filled with our normal weekly routines; cheerleading, swimming, bike rides, slip n slides, trampolining, scooter rides. Physiotherapy, Occupational Therapy, Speech Pathology and school.
Every night Skylah would say her thigh was sore, there was no swelling or bruising, no other complaints, besides at bedtime; every night after a warm bath for 2 weeks, Skylah would ask for Panadol because her leg was hurting.
Skylah was still doing all the above normal activities, so I didn’t really question it, we just decided to have some quiet afternoons and get a referral for her Orthopaedic doctor at Westmead Children's Hospital, (Skylah had a double hip reconstruction in 2022, with plates and screws removed in 2023).
On August 1st, 2025, my mum was diagnosed with breast cancer. I wanted to race, 14hrs away, to be by her side and help her through, as she has been there for my 4 kids and me. As a single mum of 4 kids (3 of whom have disabilities); Jaycee 19, Destiney 17, Levi 15 and Skylah 10, my mum and dad have always been my biggest support.
The day after mum’s cancer diagnosis, in the early hours of August 2nd 2025, I woke to Skylah having an issue with her breathing, so I took her to John Hunter Hospital, thinking we would get a diagnosis of RSV or Bronchitis, but what was to come couldn’t have been further from the diagnosis...
In the ED, her Xray was clear, and I was told we were going to the ward to be monitored for her asthma. Then, in came the paediatrician who we had met in 2017/2018 during a hospital stay. He asked what the last 2wks looked like for Skylah, and so I gave him the above run down, and he said “ok, can I look at your leg”? Skylah showed him, and to my surprise it was swollen, so he sent us for x-rays and ultrasounds... a few hours later in comes the Paediatrician and Oncology Doctor … my heart sank (we had met the oncology team in 2017/2018 when Skylah needed chemo and a bone marrow transplant x 2 for MPS1 HURLER SYNDROME), so I knew this wasn't going to be as simple as monitoring her asthma. The doctors told me they had found something that needed further investigation, but was looking like bone cancer.
Over the next few days Skylah underwent many tests: MRI, CT scan, PET scan, to name a few.... throughout this time, my older 3 kids are at home, going to school, TAFE and work, not knowing anything, because I couldn’t break it to them without all the information. As a single mum, I was lost; I couldn’t be there for my mum and she couldn’t be here for me... everything we knew was no longer; no more cheerleading, trampolining, slip n slide, bike rides, scooter rides; no parks, or beach, nothing.
Skylah was now in her wheelchair full time, she could walk from her bed to the toilet and back, and that was it (although trips to the local skate parks were still a thing but this time with her wheelchair). I had 3 hours home from hospital with Skylah to tell my older 3 kids not only about Skylah’s bone cancer diagnosis, but that my mum, their grandmother, also had breast cancer, diagnosed days apart. How do I tell my older 3 kids that two of their favourite people both have Cancer?
I pretty much dumped the news on them and had to leave again (that’s how it felt). This broke me. I couldn’t be there for all 4 of my kids in their time of need. Back at the hospital, Skylah was asleep, so I sat in the corridor trying to silently cry, because for the last 5 days every time I looked at Skylah I would cry. Why my baby? Why? Hasn’t she been through enough already?
We were soon discharged with appointments every 3 or 4 days. Having to lock the screen doors at home to stop Skylah being a kid, being outside where I had always encouraged her to play. I had to tell my kid, not to be a kid.
On the 20th of August, after a list of medical investigations had been done, a diagnosis of OSTEOSARCOMA BONE CANCER was confirmed, in Skylah’s left thigh... My mum was included in the appointments via phone, knowing how much we just wanted to be with each other. I just wanted to hug my mum.
On the 25th of August 2025, Skylah had a port-a-cath put in, as well as a nasogastric tube (for feeding and medications), and we started cycle one of chemo.
We went home for roughly 24 -36hrs but had to return to hospital after 27 vomits and Skylah losing about 2 kilos. I was so scared, her body was cold, and she wasn't well... after a couple of hours on fluids we had a bounce back and a hospital admission... Skylah got to attend a couple of days of school before cycle 2 of chemo. We went home after a few days in hospital, only to shortly return with Skylah in pain, struggling with her breathing. Skylah had pneumonia in her left lung, and so another hospital admission.
My mum went to Adelaide for breast cancer surgery during this time, and luckily they had found it early.
Trying to keep home life as normal as possible, we celebrated Skylah's 10th birthday in the mix of all of this. All she asked for was100 balloons, so the older kids helped me blow up a lot of them, and I finished them off at 2am, with Skylah waking at 5am and saying "wow you did it”, “can I pop them now” ??. With a drive by birthday organised by a friend, where people were welcome to drive past, beeping and saying happy birthday, or drop presents off for Skylah, and in return she would hand out lolly bags; to finishing the day with a cake fight over the front fence with our neighbour. It was amazing to see and hear Skylah laughing and having fun, to forget the cancer diagnosis, just for a little time.
Cycle 3 was a breeze, with only 1 vomit. We got the longest time at home, almost 2 weeks, with a couple of school days and a heap of appointments, we were enjoying home the best we could, with swims at the lake daily. With Skylah still in her wheelchair (besides toilet trips), I asked her to come get her medication before bed. She was out of the wheelchair to go to the toilet, so I said “its ok, just come to the kitchen”. After taking her medication, Skylah went to go back to bed when she tripped on the dog, and it was IMMEDIATELY clear she had broken her femur right where the Cancer is. We jumped straight into action, Skylah (no tears) just said “ouch my leg”. I told Jaycee to call an ambulance, Destiney to keep Skylah calm and on the floor by looking at Kmart on her phone; Levi to ring nan and tell her what was going on, and I called ward J1 (the paediatric oncology ward) to advise them, as Skylah’s platelets were only 17 at PODU (Paediatric Oncology Day Unit) that morning. The ambulance turned up and gave Skylah the green whistle and it was agreed Jaycee (Skylah’s 19 yr old Sister) would go in the ambulance to John Hunter with Skylah, as I was starting to cry and couldn't keep it together. I needed to yell and swear and scream in the car, all the way to John Hunter, so that once we arrived, I could be cool, calm and collected, as Skylah feeds off my emotions.
On arrival, Skylah asked the nurse to take her to J1 please, as she knew it was going to be a stay. After hours in emergency and having to go to theatre to have her leg straightened and placed in traction with a back slab, it was a planned “lights and sirens+ to WCH (Westmead Children's Hospital) the next day. However, the surgeon at Westmead decided JHH had it all under control for now, and given my family circumstances, being a single mum, he would leave us at JHH until our original surgery day..
Skylah has remained in JHH since the break and was transferred to WCH on Monday 24th November, for surgery to remove the cancer from her leg. Skylah had this 9.5hour surgery on Friday 28th November, and is so far doing well.
My mum reminds me that “An arrow can only be shot by pulling it backward. So, when life is dragging you back with difficulties, it means that it's going to launch you into something great. So just focus and keep aiming”.
Living in survival mode sucks. But we will get through this. Crying in the shower, or in the corridor so I don’t wake Skylah has become a weekly thing because it’s ok to break just don’t give up! All hospitals should have a smash and scream room available... because I feel we will be using this.
Skylah has level 3 autism with an intellectual, developmental delay. Although she is 10years old, cognitively she is about 5-6 years old. Along with other diagnoses, Skylah doesn't really understand what's going on; all she knows is that her leg hurts and the doctors are trying to fix it. Some days she looks so scared because she comes in healthy and happy and then bam she’s sick, or sore, or in a bed, and can’t get out...
As I said earlier, Skylah’s life hasn’t been easy. Her past operations and diagnoses include…Adenoid removal, tonsils removed, grommets inserted, tongue reduction, hernia removal,
carpel tunnel surgery, trigger finger release surgery, double hip reconstruction with follow up surgery to remove the plates and screws. She already had chemotherapy and 2 x bone marrow transplants in 2017 and 2018 and now is enduring all that comes with bone cancer.
Skylah has been waiting on other surgeries which have now been put on hold due to her cancer diagnosis and its treatments. After cancer treatment, Skylah will need cloudy cornea transplants (both eyes), removal of a cyst in her lower jaw, and extensive orthodontic work.
Skylah is school captain of her school that only goes to year 4. Due to her bone cancer treatment, she is missing out on orientation to middle school. I’ve always had a rule that Skylah is not to have any therapy at school, that school needs to be her safe place, the one place that is all about her ability and not her disabilities.
I am someone who feels like a burden on others if I need help, so I struggle to ask for the help.
