Having a child with a serious illness has an enormous effect on the whole family. When Melinda’s seven-year-old son Tom was diagnosed with cancer, it came as a total shock. We asked Melinda to share with us the impact Tom’s illness has had, and how Starlight has helped Tom and his family in their darkest of times.

In Melinda’s words, this is Tom’s story...Tom is our oldest son. He is a loving and affectionate, curious open-minded and compassionate child. He loves spending time with his family and mucking around with his friends more than anything else in the world. When Tom started experiencing leg pain at night, we originally thought it was just typical growing pains. As the leg pain continued to increase we sought help through our GP. All the general testing appeared normal, so we were sent to the children’s hospital for further investigation as his pain continued.

Right up until the night we were admitted through emergency, Tom was running around with his friends as normal. Even looking back now there really weren’t any signs of him slowing down.

When doctors told us he had ‘Metastatic Genitourinary Embryonal Rhabdomyosarcoma’ we were in total shock. It was a lot to absorb, and Tom’s initial prognosis was, for lack of a better word, ‘bleak’.

We were frightened. Not just about the outcome, but for what his treatment would entail and for what our little boy would have to endure. There is a lot of grief that comes with a diagnosis such as this. Not just a loss of health but a loss of identity, independence, and future plans. We knew that to get through this our family unit was going to have to spend a lot of time apart which would be a huge and difficult change for all of us.

As we feared, the journey our family was on prior to diagnosis has taken quite the detour. With all the time we spend at hospital it has been challenging to try and maintain some remnants of our previous lives.

One of the most challenging things for us to come to terms with is the fact there is no planning, no setting goals or looking forward to our next fun experience we can have as a family. We live one week, one day, one hour at a time.

For Tom, cancer and everything that comes with it has taken an enormous toll.

Other than the leg pains, Tom didn’t feel unwell prior to going to the hospital, and yet his life changed so quickly and traumatically. His body, no longer his own, is constantly being injected with medicine that makes him feel sick. Often he must sleep in a room shared with strangers, and in a bed that isn’t his own. He’s been separated from his family & friends, whom he misses greatly, and his immunocompromised condition leaves him too vulnerable to attend his regular school which he loves.

Tom has developed quite severe anxiety which is no longer only limited to his time in hospital.In hospital he can become quite withdrawn and has developed a nauseas reaction to the presence of medical staff.

Outside of the hospital he quite often vomits at the thought of treatment before we even walk through the doors.

Through all the pain however, Starlight has been such a positive experience for us. The Starlight Captains are a shining light on some of the darkest days and offer such a great escape from the daily grind of life in hospital as a cancer patient.

On the sickest of days when Tom can't leave his bed, he looks forward to the Captains visiting his room. Even just knowing the Starlight Express Room is there waiting for us is a valuable goal to work towards for when he is feeling well enough.

The Starlight Express Room is not just an escape, but a glimmer of hope and a reminder of a previous life outside of the hospital. We have found it triggers positive physical and emotional changes in Tom.

Tom knows he always has a friend in the Captains. He recognises the Starlight Express Room as his safe space, away from medical equipment and personnel. The room is a place where kids feel they can be free to be themselves, to meet friends and make new ones.

Without the distraction the Starlight program provides I would imagine hospital life for Tom would feel relentless and the trauma of his hospital stays overwhelming. We have made some beautiful family memories with and through the Starlight program and we couldn’t be more grateful.