Being unable to make your sick child in the hospital feel better is a position no parent wants to be in. Unfortunately, that is the reality for thousands of Aussie parents every day. While they can’t cure ailments and illnesses, the incredible team at the Starlight Foundation bring moments of joy to sick kids. Today, Tuesday 23 May, marks their biggest fundraising day on the calendar – Starlight Day.
One Canberra family who were kept apart for nearly a year, know firsthand the impact the foundation can have on a child’s hospital stay. They don’t share their story often, however, the McMahon/Forde family wanted to help spread the Starlight word.
“It’s just such an important part of our lives forever. Most of the memories we want to block from 2021, but the few good memories we do have involve them,” says Michael Ford.
2020 was going to be the year of big milestones for Ariana, she was starting preschool, teaching herself to cartwheel and learning to ride a bike. It was also the year of the first pandemic lockdowns and the year bruises started appearing out of nowhere.
“Towards the end of term three, every night she’d have a shower we’d begin to sort of see these big bruises on her and they’d be in places where you just didn’t expect … One time she fell out of bed and bumped her leg and all of a sudden, she had a massive bruise the whole length of her thigh, it was just really unusual,” says Rebecca McMahon.
By the school holidays, Ariana started getting Petechiae, small red spots. Taking Ariana to get blood tests, most came back at the lower end of normal, except for white cells which were significantly low. Their paediatrician sent Ariana to Sydney Children’s Hospital for a bone marrow biopsy; this was the day they first met Captain Starlight.
“She was having her last bit of apple juice before she could go in … He played a little bit of a game that he was the apple juice police and he had to confiscate it. That was a memory that stuck with her and has stuck with us, it was an overwhelming situation to be in and, all of a sudden, we’ve got this Captain Starlight who just took away a lot of that tension,” smiles Rebecca.
The diagnosis was moderate aplastic anaemia, which could either get better on its own or it could go downhill, fast. The family was advised to get Ariana’s two brothers tested to check if they were matches should she need a bone marrow transplant.
While Ariana was still the adventurous and full-of-life little girl they knew, the bruising worsened. Soon they were told a transplant was likely as the anaemia had progressed to severe; they also started to see effects of the disease. By January 2021, her small body was dependent on blood transfusions; by February, she needed three platelet transfusions a day.
“Canberra Hospital admitted her every night and gave her some day release around all the transfusion because we just didn’t know if we could keep her safe. If she fell out of bed, bumped her head then her brain could bleed and she wouldn’t have any platelets to stop it,” explains Rebecca.
By mid-March 2021, they had to move on the bone marrow transplant; fortunately, Ariana’s younger brother Sully was a match. An attempt was stifled after Ariana’s central venous line collapsed; she spent two weeks recovering in Sydney. Once home, her body started rejecting blood transfusions and the transplant plans had to be brought forward. After seven days of intensive chemotherapy back in Sydney, Ariana was ready for the transplant.
Rebecca and Michael tried the best they could to explain what was going on to Sully and while they felt conflicted, they knew if they didn’t go ahead with the transplant, they would lose their daughter.
“We have a very healthy four-year-old that we’re asking to take as much bone marrow from him as we can legally take. We’re putting him under this procedure, which is not fun in itself and has its own risks,” says Michael.
Michael and Sully were able to head home and the young boy felt much better in six weeks. Ariana and Rebecca remained in Sydney, spending over a month in an isolated transplant room as Ariana’s immune system has been severely compromised. They then were required to spend 100 days at nearby accommodation, during which time her father and brothers came to visit.
“It was great the first time everyone could be in the same room and there were no bruises, she finally didn’t need any transfusions,” says Rebecca.
Ariana’s body started showing signs something wasn’t right. Back at Sydney Children’s Hospital they saw there were post-transplant complications with donor cells fighting Ariana’s system. Her stay this time was four months as the medical team threw everything they could at her.
“Her immune system was just demolished, so all these viruses that normally live happily inside of us were able to come out and party. They all reactivated which then, when you’ve got no immune system to fight them, is not pleasant and that nearly got her as well,” says Rebecca.
Up to this point in her journey, Ariana was happy and wanted to engage but during these four months, she was sick and isolated, and Rebecca says it really affected her mental health. During this time, the Starlight Foundation made an invaluable impact on their lives.
“It makes me sad to think that there are hospitals out there with sick children that don’t have Captain Starlight,” says Rebecca.
“It was quickly identified that Captains … if they’re on the ward, no one was to turn them away. Sometimes the staff might go ‘she’s too unwell, you can’t visit her today’; it was just recognising how important they are to sick kids.”
Although the Captains couldn’t enter the room, their presence was always known. They interacted from a safe distance, chatting with Ariana. One of the Captains painted a castle on her door, while Starlight TV helped her stay connected, even earning herself a quizmaster title.
“She played, I think, a quick quiz every single day. If she was well enough, she would dial in via Zoom, but if she got to the point where she didn’t want them to see her because she wasn’t feeling well, she could phone up and participate,” Rebecca says.
Michael and the couple’s sons moved to Sydney during this time; their eldest son Alex went to the hospital school while Sully went to the day care centre. The Starlight Room proved to be an invaluable resource for the young boys. The team knew them by name and spent time playing with them. Rebecca and Michael say they will forever by grateful to the team for being there for the boys when they felt they were preoccupied.
“There was still a bit of a hangover of no siblings allowed in the Starlight Room – a hospital rule, not a Starlight rule. I spoke to Starlight about it and the amazing Commander Ken spoke to the hospital and got that rule changed,” says Rebecca.
Rebecca and Ariana left the hospital in August but couldn’t return to Canberra until December, and the Starlight team continued their support. They called Ariana on her birthday to help her celebrate.
“They all organised a Zoom call, they gave her balloons and a present. Again, her mental health wasn’t the greatest but that didn’t matter to them, they sang her songs, they entertained her, it was just beautiful,” says Rebecca.
Finally home, Ariana was reunited with her family, including the much-loved miniature Schnauzer, Scooby. Ariana and the family were granted a Starlight Wish to the Gold Coast and were able to spend time together at the theme parks.
“We got to reconnect as a family, it was our first real time away together. We got to have fun and to just try and put the horrendous year that was behind us,” smiles Rebecca.
Now eight years old, every day is the best day for Ariana. Her parents say she doesn’t take anything for granted, and is the most positive child either of them has met.
“I don’t know anyone like her that enjoys life as much as she does and is able to see the positive in every little mundane thing in every day,” says Rebecca.
With regular check-ups saying Ariana is doing well, the family know that there may be long-term side effects from what her body has been through, and they are prepared to address it together.
“We wouldn’t have got through the year without Starlight. It made the world a difference for her and in turn made a world of difference for us,” says Michael.
The Paediatric Playroom at the Centenary Hospital for Women and Children in Canberra is currently closed while Starlight conducts refurbishments (Captain Starlight is still making visits). The family hopes to see the doors open again soon so other sick kids can feel the warmth their family did.
To donate and help make a difference in a sick child’s life this Starlight Day, visit starlight.org.au
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