Our beautiful girl, Robyn - or Bobbi as she says, has a very large, cancerous brain tumour and we have had to relocate to the Sydney Children’s Hospital for an indefinite period of time while she undergoes several brain surgeries and very intense chemotherapy.
Bobbi’s tumour is a grade 4 ETMR which is one of the most aggressive and incurable brain tumours found only in young children. The life expectancy of a child with ETMR is just 6-9 months from diagnosis.
Our baby has had almost 20 hours of brain surgery in 7 days, but unfortunately her surgeons were not able to remove all of her tumour. The placement of her tumour makes her chances of survival impossible, as the whole tumour can never be removed.
As a family we chose to give Bobbi chemotherapy to help improve her quality of life, as her tumour is growing rapidly and without chemo she would be even more sick. The chemo is very harsh on her body and she is experiencing very awful side effects including vomiting, fatigue and mouth sores.
While she is stable, things are so scary and unknown and can turn bad very quickly. The morning after her surgery, her heart stopped for two minutes but she was resuscitated and stabilised very quickly.
The level of care Bobbi requires is extremely high, meaning two of us need to be here at all times.
As you can imagine, the last thing her family want to do is return home and go back to their jobs, worrying about being so far away from our beautiful girl. Her daddy, Steve and sister Ashleigh have not left her side and her other sisters Rachelle and Sarah havebeen travelling back and forth to visit.
Being located in Grafton, Nowra and Huskisson, the cost of travel, food, accomodation and rent back home is making it almost impossible to continue to stay by Bobbi’s side during this time because we cannot work with this going on.
Our family is in for a very very long, terrifying journey and we need to be with each other to get through it. If you can spare as little as $5 to help us stay together, we would be eternally thankful. Every little bit counts.
Please help us be able to stay by Bobbi’s side while she fights this - help us Be Brave for Bobbi
- Allegra Nemaz
- Jennifer With
- E Oc
- Stacey Wicks