‘Dear God, why are you doing this to me again?’ asks brave little girl
Hiding under her bed, knowing the cancer had come back, Robyn Smyth (10), had decided to write a letter to God.
“Dear God, why are you doing this to me?” she wrote.
She had been given the worst news that any person would want to hear: her cancer had come back and she would have to fight the disease all over again.
From the age of four, she had been in remission – battling off the life-threatening neuroblastoma, with a five per cent survival success.
And, after a series of new tests this week, the family received the news that they had been dreading – the cancer has spread throughout their little girl’s fragile body.
“There is nothing stopping her cancer now,” says mum Bernadette (35).
“She’s completely and utterly defenceless against this monster.”
On Wednesday her parents received the devastating news that their young daughter’s cancer, neuroblastoma, had spread.
“The cancer has progressed into her spine, ribs, pelvis and jaw and now we urgently need to get chemo treatment here in Crumlin before we can go to the States.”
The family had believed their only hope is to take part in a vaccine trial in New York. They have been fundraising money for the treatment.
But the plan has changed and Robyn will now hope to make an urgent, life-saving journey to Helen DeVos Hospital in Grand Rapids Michigan, to meet the same medical team who have helped young Lily Mae Morrison.
Bernadette hopes her daughter will get Molecular Target Treatment, which is a unique treatment to battle the neuroblastoma. It’s an individual treatment trial and the chances of survival are unknown.
“We are trying to come up with options, where there are few options left,” says Bernadette.
“We need to continue to raise money to get her to the States and on this trial. Everything is experimental and urgent.
“You wouldn’t think there’s anything wrong if you saw her running around here.”
Robyn will now begin her round of chemo on Tuesday in Our Lady’s Hospital Crumlin and depending on results and funds will begin a long journey across the Atlantic.
Bernadette and dad Leighton (37), who also have another daughter Millie (3), have been overwhelmed by the generosity of the public in donating to Robyns Life Trust.
“But we have €350,000 out of the €500,000 quoted left to go,” says Bernadette. “In the last three weeks we raised €20,000.”
Robyn was diagnosed with the killer disease at the age of three years of age. When she went into remission in 2009, her hopeful mum prayed that her little girl’s ordeal was over, but this wasn’t to be.
In July 2013, Bernadette discovered a lump in Robyn’s jaw, which was later identified as a tumour.
“Telling Robyn she had cancer for the second time was the worst thing I have ever had to do. She was so distraught, she just started to scream. She was so angry, she just crawled under the bed, she wrote this little note saying: ‘Dear God why did this happen to me again?’”
This was followed by medical tests in London including full body radiotherapy which being placed in isolation for two weeks and not even being allowed to see her parents. Effectively, Robyn was radioactive for that time.
Further tests had been carried out in Philadelphia.
“She was fine for four and a half years,” says Bernadette.
“Then one day she had a nose bleed and was complaining about her teeth. I didn’t think too much of it,” she adds.
Bernadette then took a trip to Chicago to a special conference on neuroblastoma. She was joined by her friend Judith Sibley, mother of Lily Mae, who herself had been battling neuroblastoma. They’d previously met at a conference five months before in London.
“The night after I came home Robyn was brushing her teeth and I pulled her hair back off her face and I thought I could feel a lump on the side of her jaw,” continues Bernadette.
“We got an appointment to see a specialist and they brought it forward. Robyn was sent for a scan and straight away we were called in and told ‘it’s not good news’.
“Her tumour had protruded through her jaw bone. She was in terrible pain. It started in her face and around her lips. Her face started to swell.”
The decision was made to go on a planned holiday a few days later and not tell Robyn the news until they returned.
“I knew Robyn would be facing more scans in those next few days,” adds Bernadette.
“Inside my heart was breaking. Robyn was flying around the pool, but I couldn’t function. After the holiday we told her gradually, that we would be going to the hospital for scans.
“We didn’t tell her the cancer had returned until the day she had to go to hospital to get a line put in,” adds Bernadette.
“She was terrified. Robyn went quiet into herself in the first few weeks and did not want to talk to me. She was angry.”
Bernadette’s friend Judith said she is devastated for her friend.
“There was an incredible shock within the neuroblastoma community when we heard that Robyn had relapsed. It hit us all very hard.”
Lily Mae is now 18 months in remission from neuroblastoma and recently celebrated her seventh birthday.
Her treatment is almost completed in the Helen DeVos Hospital.
“She has six months left on the treatment trial,” says Judith.
She has travelled to the U.S. every three months for the past two years. The public raised well over €420,000 towards the cost of the treatment.
“We are so grateful to the Irish public for all their fund-raising to help our daughter,” says Judith.
“Bernadette needs to get Robyn to the U.S., she needs the Irish public to get behind the campaign,” adds Judith. “Please help.”
To help – idonate.ie/robynslife. Also text ROBYN to 57802 for €2. Also a bank account has been set up – AIB 21417099 sort code 93-23-53.
Details also on Robyns Life on Facebook.