“Some days you’re really hopeful, and some days you’re planning a funeral.”
Irene Rosenbaum (Strouzas) has no other way of describing the last two years.
Currently her life is on hold as she looks after her four-year-old son Lukas. He’s a one in a million case, a statistic for many, but a daily reality for the family. Lukas suffers from a rare disease called medulloblastoma; in leman’s terms, a brain tumor. Most children’s cancers are rare, but for Lukas, the odds are against him. One in three children die of the disease, and for Lukas, being diagnosed under the age of three wasn’t good news.
As I visited the Lukas at home, the only sign you see that the youngster is sick is a small tube going around his cheek to his nose, feeding him throughout the day.
For Irene and her husband Ralf, nothing was amiss before the diagnosis. Having a textbook pregnancy, and watching a very healthy Lukas grow, nothing prepared the family for the sudden turn of events.
The first signs of distress were harmless. Lukas, then two and a half, wasn’t keeping his food down and wasn’t as keen to play with his beloved trains.
The doctors dismissed the problems as just a faze.
“”He looks too well” they kept telling me,” Irene says to Neos Kosmos.
“I started looking it up, I googled everything.
“Morning vomit did sort of match brain tumors. Of course you don’t want to think that, but it’s always in the back of your mind.”
More tests and it was only a matter of time until the diagnosis was confirmed. Irene innocently remembers calling her boss that day, saying she’ll would try and be in after lunch. She never returned to her job.
“My first thought was is he going to survive the night,” she says the night Lukas was admitted into the Royal Children’s Hospital.
“I just thought he was going to die now”.
After an 11 hour surgery, Lukas wasn’t done. The tumor couldn’t be fully removed, so more than six months of aggressive chemotherapy followed. That would alter Lukas and his family forever.
“We got into the routine very quickly,” Irene says.
“I think he thinks that’s normal. I think he thinks that’s what all two and a half year
olds think.”
Lukas soon became accustomed to his new life. He would extend his arm to get his blood pressure measured, he’d put out his finger for a finger prick. It all became normal, to the point that going home between bouts of chemo was the stressful part.
“When we’d come home he’d actually ask to go back to the hospital and go to his room,” his mother says.
Despite his ordeal, Lukas refuses to talk about his condition. Whether it’s a coping mechanism, whether it’s because he doesn’t understand the gravity of his condition or if it’s because he hasn’t known another life, his mother can’t tell.
You begin to understand that Lukas is aware of his circumstances when the topic of his tubes comes up.
“He hated the tubes, he had a permanent IV line in,” Irene says.
“He didn’t want to see them, didn’t want to know about the tubes. To undress him and give him a bath was like a torture for him. He just didn’t want to take off his top
“No, the tubes, the tubes, the tubes” he would say.”
For now, Lukas is still the happy but shy child his mother knows well. Looking around the house, his obsession with trains is evident. No nook and cranny is without a Thomas the Tank Engine affiliation, and blue definitely remains Lukas’ favourite colour.
Starting child care was a big step for Lukas, something quite different to the play area of a hospital. His battle with cancer started at a key developmental stage, so for Lukas, some things are still new to him.
“He’s generally a bit scared of the world, but fair enough,” Irene says.
Life for Lukas if he becomes cancer free isn’t easy. He will always have to be medically managed, he will have neurocognative affects, heart problems, liver problems. Tumors in the brain are very hard to treat thanks to the body’s built in protectors. The brain itself has a protective barrier to prevent toxins for getting in, but getting toxins out is much more difficult. Medulloblastomas are known for sitting near the bottom of the brain, close to the spine which means the cancer can spread to the nervous system very easily and quickly.
The family never expected to see their only child crippled with such an unforgiving disease.
“You have a child and you have all these great expectations,” Irene says.
“Are they going to get a great job? Are they going to have a great education?
“Now all I want is for him to just survive.”
The gravity of the diagnosis has Irene scouring the net to find anything new that might help her boy, while her husband copes by avoiding the logistics of it. He finds the less he knows the better and is happy to get information as he needs it.
“Knowledge is power,” Irene argues.
“I know all the variables, I know step B, C, D, if this doesn’t work, what about this.”
The marriage has seen some collateral damage thanks to the disease.
“It’s been very difficult, me and my husband do cope very differently,” Irene reveals.
“It does make for a bit of a division in the family.”
As a mother, instead of enjoying milestones for her son, she finds herself thinking morbid thoughts. She tells me whenever she’s in a shop buying Lukas clothes, she often thinks if she will ever buy size seven or eight clothes. Will she ever teach him how to ride a bike? Will he see his first day of school?
Hope for the family has never faded.
Irene says chemotherapy and radiation are Lukas’ best chance to fight the cancer.
The family has exhausted all their options in Australia and are now looking towards American treatment centres with more advanced radiation programs to give Lukas better odds.
“In terms of a cure, it’s the same, so we’re not going to get a cure there, the cure rate remains the same,” Irene says.
“It’s just that you can save some collateral damage, it’s a different type of radiation that doesn’t radiate unnecessary structures.”
It’s Lukas’ best chance of long term survival without causing too much damage.
Currently, Lukas is getting more affected by the strong chemo program, with his white blood count not recovering as quick.
The treatment itself cost upwards of $200,000, money the family doesn’t have.
Cancer has touched almost every one of us in the Greek community, whether it be a family member or a friend. Consider Lukas as your son, your grandson, your brother or your nephew, and collectively as a community we contribute a great deal. A little can go a long way.
Friends of the family are organising a trivia night on Saturday 7 September to raise some much needed funds to help Lukas get to America. Visit
www.facebook.com/GetOnBoardForLukasRosenbaum for more information on the night.
To donate directly, please send bank desposits.
Bank: ANZ
Name: Irene Rosenbaum
BSB: 013365
Account number: 284536156.