A Starlight Story
Recently Carol Duncan ran a story on how the Starlight Foundation granted a young girl a wish to publish a book.
Late in 2003 our family was touched by Starlight & I would like to relate what Starlight did for our son.
In April 2003 our son, Alex, was diagnosed with Leukaemia. He underwent intensive chemo that resulted in a hospital stay of almost 3 months. Most of that time spent unable to leave his hospital room which overlooked the hospital car park & was 60Km from his classmates back at Dungog High School! After the 3 month stay it was back to the hospital every few weeks for more chemo to keep the Leukaemia in remission.
When the doctors were sure Alex’s Leukaemia was in remission they sent us to Westmead Hospital to see a specialist about a bone marrow transplant. Unfortunately none of our family was a match & at Westmead we were given the news that no matching donors could be found on the world data base. The doctor did his best to break it to us gently that what had been Alex best chance of long term survival had evaporated.
A lovely lady called Karyn ,the hospital social worker, spoke to us basically to see how we were coping. It all seemed a blur but I do remember her saying that Alex should put in for a Starlight wish & handing us a form to fill in. My wife carefully folded the paper work & filed it in her handbag. The long silent drive back from Westmead meant that Starlight was soon forgotten. After a few days at home we received a phone call asking had we considered the Starlight wish. We thought about it for a few days & decided that we shouldn’t deny Alex an opportunity that he may never receive.
Alex filled in the form on which he was ask to list several wishes his number1 wish was a laptop computer & his 2nd wish was a drive in a V8 super car with a day at the car races.
A few days later Delores from Starlight came to speak to Alex. Delores came with small gifts for the whole family which was a special treat especially for our youngest son who was 3 years old at the time. Delores is one of those special people whom you think is a slightly crazy & whimsical character but has a loving heart made of gold. For younger gift recipients Delores is Fairy Del whose role is to grant the wishes to those in her care but she spreads her magic to other members of the family by showing you that someone cares & is prepared to give up their life to bring joy to others.
Alex wish of a computer was granted & Dolores arranged a day to drop off his wish. We organised a small party with family & friends. Alex wish was a basic laptop computer & as long as it had a modem he was happy. Dolores arrived with a top of the range HP laptop computer, Microsoft software, printer, scanner & 12mth internet with AOL. These companies had donated all these products.
As Alex lovingly toyed with keys of his computer tears streamed down his mothers face at the generosity of people & the joy that Alex was receiving.
Now you may ask why a computer? Well Alex chemo at that time was planned to go for another 18 months with regular stays in hospital. That computer was to become his link to the outside world via Hotmail & Yahoo messenger. When feeling like crap from the cocktail of chemo drugs he was able to retreat to his room & listen to his favourite songs loaded on the computer. It was to become his DVD player during the mind numbing boredom of blood transfusions. Alex returned to high school part time & he used the computer for homework & writing assignments.
Alex was onto his last chemo session when his Leukaemia returned. Another heavy round of chemo & he was back in remission. This time the only option was a cord blood transplant that was an imperfect match. So back to Westmead for a 60 day stay in isolation & another 40 days recovering in a flat near the hospital. That computer that was all that stop Alex going stir crazy.
In October 2006 Alex relapsed & this time the chemo failed to get him back in remission. In early November we were given the news that Alex had about 4 weeks to live & on the 17Dec Alex died at home in his room with his beloved computer playing his favourite Robbie Williams album.
On that computer Alex had organised his funeral & it was from that computer that I downloaded songs for his funeral. It also it contained the phone numbers of all his friends.
Alex had been saving to go to Uni & so after his death we donated $5000 to the Starlight Foundation which was the average cost of wish then. I think that a young boy with cancer got his wish of special cubby house. Alex himself was so thankful for his computer that he spoke at charity golf day that was raising money for the Captain Starlight room at the John Hunter Hospital.
The End
P.S Dolores did get Alex 2 hot laps in a V8 supercar with Mark Skaife on a day they were testing the car.
Recently Carol Duncan ran a story on how the Starlight Foundation granted a young girl a wish to publish a book.
Late in 2003 our family was touched by Starlight & I would like to relate what Starlight did for our son.
In April 2003 our son, Alex, was diagnosed with Leukaemia. He underwent intensive chemo that resulted in a hospital stay of almost 3 months. Most of that time spent unable to leave his hospital room which overlooked the hospital car park & was 60Km from his classmates back at Dungog High School! After the 3 month stay it was back to the hospital every few weeks for more chemo to keep the Leukaemia in remission.
When the doctors were sure Alex’s Leukaemia was in remission they sent us to Westmead Hospital to see a specialist about a bone marrow transplant. Unfortunately none of our family was a match & at Westmead we were given the news that no matching donors could be found on the world data base. The doctor did his best to break it to us gently that what had been Alex best chance of long term survival had evaporated.
A lovely lady called Karyn ,the hospital social worker, spoke to us basically to see how we were coping. It all seemed a blur but I do remember her saying that Alex should put in for a Starlight wish & handing us a form to fill in. My wife carefully folded the paper work & filed it in her handbag. The long silent drive back from Westmead meant that Starlight was soon forgotten. After a few days at home we received a phone call asking had we considered the Starlight wish. We thought about it for a few days & decided that we shouldn’t deny Alex an opportunity that he may never receive.
Alex filled in the form on which he was ask to list several wishes his number1 wish was a laptop computer & his 2nd wish was a drive in a V8 super car with a day at the car races.
A few days later Delores from Starlight came to speak to Alex. Delores came with small gifts for the whole family which was a special treat especially for our youngest son who was 3 years old at the time. Delores is one of those special people whom you think is a slightly crazy & whimsical character but has a loving heart made of gold. For younger gift recipients Delores is Fairy Del whose role is to grant the wishes to those in her care but she spreads her magic to other members of the family by showing you that someone cares & is prepared to give up their life to bring joy to others.
Alex wish of a computer was granted & Dolores arranged a day to drop off his wish. We organised a small party with family & friends. Alex wish was a basic laptop computer & as long as it had a modem he was happy. Dolores arrived with a top of the range HP laptop computer, Microsoft software, printer, scanner & 12mth internet with AOL. These companies had donated all these products.
As Alex lovingly toyed with keys of his computer tears streamed down his mothers face at the generosity of people & the joy that Alex was receiving.
Now you may ask why a computer? Well Alex chemo at that time was planned to go for another 18 months with regular stays in hospital. That computer was to become his link to the outside world via Hotmail & Yahoo messenger. When feeling like crap from the cocktail of chemo drugs he was able to retreat to his room & listen to his favourite songs loaded on the computer. It was to become his DVD player during the mind numbing boredom of blood transfusions. Alex returned to high school part time & he used the computer for homework & writing assignments.
Alex was onto his last chemo session when his Leukaemia returned. Another heavy round of chemo & he was back in remission. This time the only option was a cord blood transplant that was an imperfect match. So back to Westmead for a 60 day stay in isolation & another 40 days recovering in a flat near the hospital. That computer that was all that stop Alex going stir crazy.
In October 2006 Alex relapsed & this time the chemo failed to get him back in remission. In early November we were given the news that Alex had about 4 weeks to live & on the 17Dec Alex died at home in his room with his beloved computer playing his favourite Robbie Williams album.
On that computer Alex had organised his funeral & it was from that computer that I downloaded songs for his funeral. It also it contained the phone numbers of all his friends.
Alex had been saving to go to Uni & so after his death we donated $5000 to the Starlight Foundation which was the average cost of wish then. I think that a young boy with cancer got his wish of special cubby house. Alex himself was so thankful for his computer that he spoke at charity golf day that was raising money for the Captain Starlight room at the John Hunter Hospital.
The End
P.S Dolores did get Alex 2 hot laps in a V8 supercar with Mark Skaife on a day they were testing the car.
A lovely post, David.
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