Arya B's quilt    (Quilt Closed)

Theme details

Ducks & birds - Please keep to a yellow theme in your choice of pattern as much as possible.

Child Interests

Favourite colour - Yellow
Arya will be very happy with a colour theme please

Swimming
Netball
Birds

Biography

Arya was born in Sydney NSW in 2010. She’s an intelligent young girl who is a fish in water with a wonderful sense of humour. She loves life, her family and friends, playing netball and kicking the ball in the park. And of course playing computer games.

In Sept 2015 Arya experienced some severe pain in her feet that prevented her from weight bearing (apart from a couple of abscesses prior to diagnosis, Arya was a healthy and fit baby/toddler). Following a GP visit and blood test she was diagnosed with Acute Lymphoblastic Leukaemia. Eleven months of intensive chemotherapy and 12 months low dose maintenance treatment followed which was fairly uneventful. Apart from clinic visits with her oncologist Arya’s life returned to “normal”. ALL was a distant memory and almost forgotten about.

Unfortunately 8 months out from her 5 year “clearance” mark we received the awful news in Feb 2020 that Arya’s ALL had reared it’s head again. It was a shock to us all but we soldiered on and adjusted to the change.

During a hospital stay back in May for intensive chemotherapy treatment, we found out that Arya contracted a fungal infection (Candida Krusei - a rare fungal infection that is fatal 90% of the time) and that her blood was riddled with it.

In late May Arya was rushed down to the ICU unit with respiratory failure. At this point she was intubated, placed on a ventilator and in an induced coma. The fungal infection had spread to her lungs and caused fungal pneumonia. She was gravely ill and there were very low expectations of her surviving through the night let alone the next week.

The heavy dose of Chemotherapy she received prior to this infection depleted her body of white cells and any chance of fighting the fungal infection effectively. She required daily platelet transfusions, gcsf meds to promote white cell recovery and haemoglobin transfusions. A plethora of medications kept her going including draining her lungs of fluid and days of dialysis as her kidneys struggled to manage. The fungal infection had also spread to her eyes for which initial treatment comprised of injections into the back of her eyes.
The main thing however that was going to get Arya through this critical phase to effectively fight the fungus, was the production of white cells as medications were only going to do so much. White Cells finally appeared about 2 weeks into her time in ICU and it gave us more hope of her surviving than we had earlier.

In mid June Arya was “stable enough” to journey across the hospital for a CT scan.
Unfortunately the CT scan showed that Arya had suffered a moderate to severe stroke on the left side of her brain. Likely repercussions were: Right side paralysis, no right field of vision, speech impairment and problem solving difficulties to name a few.
Cam & I had to very quickly come to terms with a new outlook on life and what that entailed for Arya and us as a family.

Just as we got our heads around the stroke, a follow-up MRI a few days later showed further bleeding on the brain in the same stroke areas…and we were back to square one - was Arya to survive the night?? Let alone pull through with a favourable diagnosis for stroke recovery with some semblance of a normal life.…

Of course Arya’s fighting spirit and determination shone through and she beat the odds in more ways than one. Arya’s health started improving. Her sedation was slowly reduced and her lungs recovered. On 19 June she was extubated from the ventilator and all oxygen support and 24 June saw us move back up to the Oncology ward.

With daily Physiotherapy Therapy, Occupational Therapy and Speech Pathology Arya has progressed from strength to strength over the last 10 weeks with her Stroke Rehab…Her right side hemiplegia is much improved. She is able to walk now with assistance, her right arm is doing plenty of movement with the hand and fingers catching up. Her right field of vision is only mildly affected and her dysphasia is also improving extensively. 
But of course that was not why we ended up in hospital in the first place.…we started back on chemo for her leukaemia in late July. There is 15 weeks of intensive treatment remaining then we’ll start maintenance chemo for another 12 months.

The journey to today (which now also includes COVID-19 restrictions) has been a tough one and the road ahead will be challenging to say the least as we work with Arya’s stroke rehabilitation whilst still undergoing chemotherapy.

One thing is for sure, the admiration we have for Arya’s tenacity and strength is indescribable and it is the driver that keeps us on track everyday. She’s our Warrior and our hero. We are so proud of her and what she’s been able to achieved so far.

Patterns

Squares received