"In that instant our brains went into shut-down. It's like we went into a wind tunnel and were cut off from anything happening around us, unable to take anything in. I would say it was like my worst nightmare, but I don't think I have ever had a nightmare as bad as what we were being told."(canvas prints photo on canvas canvas prints online)
They are the words of father Simon Rowe describing the moment he and partner Hanna Torsh learnt that their baby girl had been diagnosed with cancer 11 days before her first birthday.
Simon and Hanna took daughter Lena to the doctor in early March this year after noticing her left eyelid was not opening fully. They were referred to an ophthalmologist and were told their little girl most likely had a viral infection.
Lena's family and friends are taking part in the Run2Cure even to help raise money for research into neuroblastoma.
Lena's family and friends are taking part in the Run2Cure even to help raise money for research into neuroblastoma.
But two days later the left side of Lena's face became paralysed, and her parents took her to the emergency department at Sydney Children's Hospital in Randwick.
"We were told it was probably Bell's palsy, which can be triggered by a viral infection,'' Simon remembers. "They decided to do a scan of her head to rule out other possibilities. We were told it could be a tumour but also that it was very unlikely that was the case."
But two-and-a-half hours later, as they continued to wait for their daughter to be brought out from the procedure they were told would take only 45 minutes, Simon and Hanna were worried.
"The paediatric neurologist came and spoke to us and said 'Sorry, it's really bad news, it's cancer. It's not what we were expecting'. He told us the tumour was in the bones of Lena's face and skull and encasing both her eyes."
Lena's form of cancer is neuroblastoma, the third most common type of childhood cancer after leukemia and brain tumours. It is the leading cause of cancer deaths of children under five.
It's been just over three months since her diagnosis and in that time the family, including four-and-a-half-year-old big sister Lottie, have had their world turned upside down.
Initially Lena's cancer was assessed as being of "intermediate risk", meaning there was 90 per cent chance of survival. But sadly, tests last week showed the tumour had grown despite two rounds of chemotherapy. Her condition is now considered "high-risk".
"We've been told the chances of survival are now very much the wrong side of 50/50,'' Simon says. "Because her tumour has gotten worse we are now facing more cycles of increased intensity chemotherapy with more negative side effects and a greater risk of infection."
Despite the ordeal she's going through at such a tender age, Simon says little Lena is "probably the happiest person in our family right now".
"Because of her age, she is shielded from the knowledge and understanding of what is happening. The rest of us are filled with pain every time we look at our beautiful baby girl,'' Simon says.
"Lottie doesn't have a full understanding of what's happening, but she knows that Lena is sick and Mum and Dad are very worried. She has learnt the word 'cancer', but we try not to say too much around her as she's been having nightmares about death."
Despite the difficult time the family is facing, Simon says he and Hanna remain thankful for two things.
Firstly, that they live in a city where getting their daughter the best possible medical care does not mean having to uproot their family for the duration of her treatment. Secondly, the family has been blown away by the support they have received from extended family and friends - some who they had not been in contact with for years.
"We are very fortunate that we have an amazing network of friends and family helping us through,'' Simon says. "Whether it's dropping off food for us, or toys for the girls, or taking Lottie for playdates while Hanna and I need to be at hospital with Lena, so many people have shown us they care."
In addition to helping Simon, Hanna, Lena and Lottie in practical ways, some of those friends and family members will also be doing their bit to help raise funds for research into Neuroblastoma. The group will be taking part in the Run2Cure Neuroblastoma fun run in Sydney's Domain and Botanical Gardens this Sunday.
"Fundraising for neurobalstoma is very important," Simon, who is himself an intern doctor, explains. "Even though it's the cancer which kills the most children it's still a very rare condition, so from a public health perspective it's not something the government can justify spending money on.
"The only way we are going to get a cure, or better treatments, is through fundraising and the collaboration of researchers across the world in America, Europe and here in Australia."
No comments:
Post a Comment