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~Dedicated to Annabelle~
Many of you will have been to Little A's on James Street and had a cup of coffee with a sweet little bear embossed in the foam on top. The food is delicious, the staff are really friendly and it feels like a very happy place. Sandy and Trung (Henry) opened Little A's in memory of their daughter Annabelle who passed away at four months shy of her sixth birthday from DIPG (Diffuse Intrinsic Pontine Glioma) a very aggressive brain cancer, most common in young children. Currently there is no treatment for DIPG aside from palliative care and so they work together with other cancer foundations to raise money to fight this awful disease. If you wish to read more about it, I have included Annabelle's facebook link above and you can head to Run DIPG to read more and make a donation to the charity that work hard to make it easier on the families going through it, to fund further research and to create awareness.
You can also visit the Rare Cancers Australia website who help support those dealing with not just DIPG but other cancers and the immense pressure they have on families.
And finally, make sure you pop in to Little A's any time, but especially in the month of August and September, with every coffee, they will donate 0.50c to RUN DIPG or other charities for childhood cancer.
TW: Some of the images may be a little distressing. Please be aware that they are here to generate awareness, and to help us remember this beautiful girl. If you wish to skip ahead to the rest of the Exhibition, you may do so here.
Annabelle's Story
The words of Sandy Nguyen: I’d love to share Annabelle’s story with you and hopefully create more awareness of brain cancer. I'd rather talk about her, though it does cause sadness, than anyone forgot about her existence.
We moved back to Vietnam in Jan 2016 so Annabelle could be with our loved ones (we were told by doctors in Perth that she only had 6-9 months left, so go home make memories but we have no family in Perth). We were living in Vietnam until May 2017 and the tumor had started to grow big and quickly.
Annabelle was diagnosed at the age of 2 years and 9 months (29 Sep 2015), 3 months before her 3rd birthday.
It all started when we went back to Vietnam for a visit. When she smiled…some thing was off…her face looked ‘crooked’ to me, she was constantly rubbing her eyes (I found out DIPG patients have double vision but she was too small to be able to tell us). She leaned to one side when walking and constantly tripped over. And, nightmares at night, she would wake up during the night screaming her lungs out (one of the symptoms, but we didn’t know) We took her to several GPs in Vietnam and was told she had ear infections… she were put on several antibiotics. Nothing improved, so I demanded a CT scan. They couldn’t tell us what it was in her head (either a tumor or blood clot). We cut our trip short and returned to Perth. We took her straight to Princess Margaret Hospital from the airport (5am) hoping doctors here could tell us it was only blood clot and they could easily remove. At 11am, two doctors, one social worker, one assistant and two other people came to the emergency room to talk to us. They took us into a private room and told us ‘Annabelle has DIPG’. I asked them what it was and was told ‘it’s one of the deadliest brain tumors, there’s no cure, no treatment except for radiation and she won’t be able to live more than 6-9 months, if you’re lucky, you’d get 12 months.’
They told us to go home and make memories as time was running out. She was put on steroids the next day to help ease the pressure of the tumor before radiation. The steroids were horrible. They made her so moody, constantly hungry, she’d had 8-9 full meals/day and wake up 4-5 times a night demanding more food. She gained 16kgs in 2 short weeks. She started her 6 weeks radiation not long after that. We went to Sir Charles Gardiner hospital 5 days/week from Monday-Fri for 6 weeks. During the treatment, they slowly reduced the steroid dose and she stopped eating all at once and lost all her water retained weight. Luckily, Annabelle didn’t get any horrible side effects from radiation, except for some headaches. We met with the doctor 4 weeks after radiation to see if the tumor had shrunk or not. It was reduced by 40% but not completely. After that, we moved back to Vietnam and started her on traditional herbs and Qigong. We’d take her for a regular check up every 3 months. And in May 2017, we found out the tumor had grown bigger very rapidly.
This is the first day of her diagnosis (29/9)
This is two weeks into her steroid course
One the day of our big move back to Vietnam, at Singapore airport
She lost hair due to radiation
We were going to bring her back to Perth for the second round of radiation but the doctors said there's ‘no hope and there’s nothing’. So I went online to search like crazy for any treatments available, or simply to find someone in the same situation to talk to. I stumbled on a Facebook page of another child with DIPG in the UK, she were having some treatment in Mexico and responded very well. I get in contact with her family and from them, I talked to more families. And I got the contact of a trusted DIPG angel’s dad in Sydney to get opinions.
Within two weeks, we had flown to Monterrey, Mexico (Annabelle and I). We didn’t speak any Spanish but we were lucky to find some local residents that went all out to help us a lot while we stayed there. Most people in Monterrey spoke English so wasn’t so bad to deal with. We just used google translate when we went to the super market etc.
On the way to Monterrey
Her first treatment in Mexico
With some DIPG families in Monterrey
I found them on Facebook that were doing treatments in Mexico. They’re mostly from the USA and the UK. There were 3 families from Australia, including us. We were one the two families that stayed full time there, due to not being able to afford the travel money and time. Other families travelled back and forth every 2-3 weeks. And they’d stay for 2-5 days and go home. It is safe to say, we are friends for life now…didn’t like the reason why we’ve met but they’re good friends.
Prior to Monterrey, I didn’t really know anyone with DIPG, at the time Annabelle was the only one in Perth with DIPG. I felt lost and completely shattered at the time. No one to talk to…to ask questions, so that’s why we moved back to Vietnam because we thought we only have 6-9 months with her. If anything happens she’d have our family with her too.
No one would believed it…they were heart broken. When we moved back to Perth to find out what was happening to Annabelle, we had to leave Annabelle’s one year old little sister at the time with our parents to look after so we could focus on Annabelle.
And I wish….we’d take her with us.
We took over the shop (Little A's) at the end of July last year (2020) and have done some renovations. And officially opened it door on 8/8/2020, exactly two years since Annabelle passed away (8/8/2018).
When we left to seek help for Annabelle, we had sold almost everything that we owned in Perth with the help of our parents, we hoped for a cure for Annabelle, but we were left with nothing. We were living in Victoria Park. My husband was travelling back and forth to help with his family business in Vietnam but due to COVID, he couldn’t do that anymore, so my in-laws helped us with the money so we could open something small while looking after two young children and make a living rather than do nothing here.
We always wanted to open a small cafe (Henry was a coffee trainer prior to Annabelle’s sickness) We wanted to feature our signature bear arts on the coffee because Annabelle loved teddy bears. Each bear he creates on the coffee is dedicated to her and her angel friends that we came to know on our journey.
I didn’t want to open a cafe so soon. Originally, I wanted to help with children cancer in any way I could.
Every year, I asked close friends, friends on Facebook to donate money to charities or I, myself went to get toys..books and sent them to PCH. DIPG alone is very underfunded, for 70 years…there’s no cure because there’s no funding…no funding = no research.
I would love to have people more aware of it and if possible, create a collection where all the money will go to Doctor Matt Dunn in NSW (he’s a DIPG angel's father). He and his team are doing a fantastic job researching DIPG. Last year, through the cafe, we raised $1.3k for his research. It’s not a lot but it’s something. I’m hoping for any way I can help with more. As mentioned, DIPG is so underfunded, not many people know about it unless they are directly affected by it.
Thank you to Sandy from Little A's for taking the time to talk to me about Annabelle, DIPG and what we can do to help.
Again, the links are below if you would like to learn more, or donate.
Run DIPG managed by Dr Matt Dunn. People can donate direct to his team. Or for us, in the month of August and Sept, with every coffee, we’ll donate 0.50c to him or other charities for childhood cancer.
Rare Cancers Australia not particularly for DIPG alone but they help all families with a child with cancer through tough times. For us, they helped us to get tickets back to Perth in 2018 after Annabelle passed away.
