When Jade was 5 she began waking up some mornings with sore head with intermittent vomiting. A visit to our local GP lead to some blood tests, eye tests, food diary and then an MRI just to be safe. Never in my mind had I thought of anything untoward.
On the 12th April 2019 our local radiology dept located a 7cm mass on Jades brain and we were rushed to Perth Children’s Hospital as as there was so much pressure built up in Jades brain a slight knock would be fatal. There was no time to react, think or research.. on 15th April 2019 she underwent 6 hours of surgery.
Jade was diagnosed on 12 April 2019 with brain tumour 7cm mass. . On 15/04/2019 she underwent over 6 hours surgery. Left frontal craniotomy with frontal lesion excision with successful gross total resection of tumour with no major damage to Jade in anyway. Confirmed as ATRT.
01/05/2019. Infection in wound required further surgery and removal of infected skull section. Jade had to wear a protective helmet to protect her brain area whenever risk of impact so most of the day except when sleeping..
15/05/2019 -03/10/2019 intense chemotherapy with stem cell recovery protocol ACNS0333 with proton treatment at the end.
27/10/2019 Jade and her family travelled from Australia to Jacksonville USA to receive proton treatment as not available in Australia.
03/01/2020 returned to Australia and treatment protocol completed.
26/3/2020 major surgery to insert Acrylic plate so no helmet required to be worn.
22/04/2020 Jade commenced trial chemotherapy as preventative. North Study..daily oral chemo at home for one year. All MRIS have been clear with no sign of reoccurrence.
20/05/2020. Jade was admitted to hospital as chemo was so detrimental to her little body. Chemo trial was ceased as too many red flags and damaging to Jades health.
16/07/2020 MRI to be done and will await results. Treatment completed.
Jade is back to her sassy, cheeky self and yes we have lots of side effects and long term issues to overcome, but we hope our story can give other ATRT families the strength and hope to stay strong and fight for survival. ATRT you are a horrible beast but we will fight you together.. we are strong.
Update for Jade's 8th Birthday - July 18th, 2021:
Jade has had clear scans so far since the end of her treatment protocol which is the best results ever! She was unable to complete The North Trial after her proton treatment as at the time it was too detrimental to her weak body so for the moment her after care consists of MRIS every 3 months.
She has returned to full time school and we as a family celebrate every day we spend all together and enjoy going away making memories. Jade is one determined young lady and her strength and ability to make us laugh is what keeps us all going.