Since Victoria's diagnosis, we have been made aware of many wonderful organisations who exist to help families like us. The purpose of this page is to give you some insight into invaluable support these organisations provide to families living with children with cancer.
It may seem like there are a lot of organisations helping us, (and thankfully there is), however they all have slightly different focusses, tailored to meet the different needs of Victoria, her siblings and parents at the different times along this journey. All of these organisations are very worthy causes, so if you feel led to donate to one or more of them, please do, and know your donation is going to make a huge difference to a child and their family's lives.
It may seem like there are a lot of organisations helping us, (and thankfully there is), however they all have slightly different focusses, tailored to meet the different needs of Victoria, her siblings and parents at the different times along this journey. All of these organisations are very worthy causes, so if you feel led to donate to one or more of them, please do, and know your donation is going to make a huge difference to a child and their family's lives.
- Camp Quality
- Harry's House
- Kids with Cancer
- Redkite
- Ronald McDonald House Charities
- Starlight Children's Foundation
Camp Quality
Camp Quality Newcastle has been an amazing support to us since we joined their organisation in May 2011. The purpose of Camp Quality is to "create a better life for every child living with cancer in Australia."
We have enjoyed many many family events with them, including family camps; a mother and daughter camp; a dads and lads camp; junior camp when Charlotte and Victoria went to Dubbo for the week; Christmas parties; drive-in theatre nights; free tickets to various shows and many other fun activities. We have also enjoyed some wonderful family holidays at the cabin at One Mile Beach, courtesy of Camp Quality.
We have enjoyed many many family events with them, including family camps; a mother and daughter camp; a dads and lads camp; junior camp when Charlotte and Victoria went to Dubbo for the week; Christmas parties; drive-in theatre nights; free tickets to various shows and many other fun activities. We have also enjoyed some wonderful family holidays at the cabin at One Mile Beach, courtesy of Camp Quality.
Victoria at a Camp Quality Day at Treetops Adventure Park
Charlotte at a Camp Quality Day at Treetops Adventure Park
Wendy and Victoria doing Archery at the Mother and Daughters Camp
The Robinson family at the Camp Quality 4 wheel driving day on Stockton Beach
Ken in an off-road car at the Milbrodale track.
Charlotte and Ken at the Camp Quality Family camp at Riverwood Downs
Each of these events and holidays have provided us with special family moments that have allowed each of us to escape from the reality of living with a child with cancer. Every member of our family has had the opportunity to try new things with Camp Quality, challenging our boundaries and developing a greater self-esteem. We just love this organisation!
Harry's House
The Harry Meyn Foundation, through Harry's House Family Retreat provides free accomodation for families of children living with cancer or bereaving the death of a child from cancer. Harry's House is named in memory of Harry Meyn who at the age of 6 was diagnosed with a brain tumour and sadly passed away 7 months after diagnosis.
We had the privilege of staying at Harry's House in January 2013. The home and all it's beautiful furnishings and extras, including TVs and DVD players in each bedroom, which the children were thrilled about, provided a place of peace and rest for us all. When we arrived I cried for the first hour, overcome with the generosity of people and the strength of spirit it must have taken the Meyn family to establish this retreat.
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Alexandra enjoying a peanut butter sandwich at the breakfast bar.
Ken having a quiet cuppa in the garden courtyard.
Marshall on a fancy type of skateboard found in the garage.
The location of Harry's House in Stockton is supurb, with only a short walk to the local swimming pool (very handy on Tuesday 8th 2013 when it reached 40 degrees), beach, parks, breakwall and ferry to Newcastle.
One afternoon we ventured out to the breakwall and saw some interesting sights ....
Charlotte and Victoria on the ferry from Stockton to Newcastle (a 5 minute voyage)
Marshall and Alexandra on the ferry.
The ferry coming into the wharf at Newcastle.
... including this windbreak put up by a loving husband for his wife ...
... and let the girls try it out.
Newcastle, the working harbour ...
... with room for a bit of relaxation.
The northern breakwall, looking west.
Two girls having a great time!
Kids with Cancer
Kids with Cancer foundation is a "small independent children's charity. They have no affiliation with any single children's hospital". Since 1999, they have given over $600,000 to the John Hunter Children's hospital and provided funding towards the establishment of the paedeatric oncology day unit where Victoria has her chemotherapy treatment.
Kids with Cancer also provides financial support to families with children with cancer. We have been the recipient of this financial support and are very grateful for it.
Redkite
The Redkite organisation is a "cancer charity which supports children and young people with cancer, and their families, through the entire cancer journey. Redkite provides families across Australia with essential emotional, financial and educational support".
We have received support from Redkite in many different ways including providing us with an invaluable information pack when Victoria was first diagnosed. This information provided us with some insight into the emotions we were experiencing and were likely to experience on this journey. It also gave us help when communicating with other people regarding Victoria, and suggested ways to ask for and accept much needed help.
Music therapy in the hospital is also a service that Redkite provide. I will never forget a few days after Victoria's operation in January 2011, when the music therapist came into Victoria's room. Our entire family was there, including my mum and dad, and what music did we make! It was a real bright spot in the day during a very challenging week.
When Victoria commenced chemotherapy, Redkite also provided books for Marshall and Charlotte to read to give them some understanding as to what was happening medically to Victoria. The book for Marshall was written specifically about brain tumours and was in a graphic novel format. I learnt quite a lot from it too.
Redkite has also given us financial support throughout the past 2 years at various time. This support has been immensely helpful and we are very grateful for it.
Christmas hampers and opportunities to attend family days such as Family Tenpin blowing afternoons and the amazing Dreamnight at Toronga Zoo are some of the other ways Redkite has helped us.
We have received support from Redkite in many different ways including providing us with an invaluable information pack when Victoria was first diagnosed. This information provided us with some insight into the emotions we were experiencing and were likely to experience on this journey. It also gave us help when communicating with other people regarding Victoria, and suggested ways to ask for and accept much needed help.
Music therapy in the hospital is also a service that Redkite provide. I will never forget a few days after Victoria's operation in January 2011, when the music therapist came into Victoria's room. Our entire family was there, including my mum and dad, and what music did we make! It was a real bright spot in the day during a very challenging week.
When Victoria commenced chemotherapy, Redkite also provided books for Marshall and Charlotte to read to give them some understanding as to what was happening medically to Victoria. The book for Marshall was written specifically about brain tumours and was in a graphic novel format. I learnt quite a lot from it too.
Redkite has also given us financial support throughout the past 2 years at various time. This support has been immensely helpful and we are very grateful for it.
Christmas hampers and opportunities to attend family days such as Family Tenpin blowing afternoons and the amazing Dreamnight at Toronga Zoo are some of the other ways Redkite has helped us.
Ronald McDonald House Charities
Ronald McDonald House Charities is an independent, non-profit organisation, that helps seriously ill children and their families when they need it most.
Our first experience of Ronald McDonald House Charities was the family room at the John Hunter Children's hospital. When Victoria was first in hospital, the family room provided a welcome change of scene from Victoria's hospital room, which did tend to get a bit squishy when the whole family was visiting! The family room provided quiet activities for the children via books, puzzles, some toys, DVDs and an outside play area. A fenced off kitchen area meant we could have some hot drinks and keep an eye on the children. (Hot drinks are not allowed in the children's wards). Also the free provision of cheese and biscuits, and a selection of sweet biscuits help to reduce the cost of buying from the hospital's cafeterias each day. There is also a 'quiet room', where I sometimes retreated for a sleep, or to pray by myself or with others. The Ronald McDonald Family Room was an absolute blessing to us and continues to be each time Victoria has an MRI or an 'emergency 3 day hospital stay'.
Most recently a referral has been made by our social worker for Victoria to participate in the Ronald McDonald Learning Program. This program includes access to tutoring to make up for missed school days due to treatment or illness, and access to online learning tools. We are grateful for this additional assistance for Victoria as she starts her schoolling journey.
Our first experience of Ronald McDonald House Charities was the family room at the John Hunter Children's hospital. When Victoria was first in hospital, the family room provided a welcome change of scene from Victoria's hospital room, which did tend to get a bit squishy when the whole family was visiting! The family room provided quiet activities for the children via books, puzzles, some toys, DVDs and an outside play area. A fenced off kitchen area meant we could have some hot drinks and keep an eye on the children. (Hot drinks are not allowed in the children's wards). Also the free provision of cheese and biscuits, and a selection of sweet biscuits help to reduce the cost of buying from the hospital's cafeterias each day. There is also a 'quiet room', where I sometimes retreated for a sleep, or to pray by myself or with others. The Ronald McDonald Family Room was an absolute blessing to us and continues to be each time Victoria has an MRI or an 'emergency 3 day hospital stay'.
Most recently a referral has been made by our social worker for Victoria to participate in the Ronald McDonald Learning Program. This program includes access to tutoring to make up for missed school days due to treatment or illness, and access to online learning tools. We are grateful for this additional assistance for Victoria as she starts her schoolling journey.
Starlight Children's Foundation
The Starlight Children's Foundation "brightens the lives of seriously ill children, and their families, throughout Australia" in many different ways. Our experiences with the Starlight Foundation started with a visit from Captain Starlight when Victoria was in the Intensive Care unit after brain surgery. Captain Starlight arrived with gifts galore and a very smiley face.
Since that time we have often made use of the Starlight Express Room at the John Hunter Hospital. A room dedicated to providing activities for patients, their siblings and friends.
Marshall playing some of the electronic games.
Alexandra making a mask with a starlight room volunteer.
Captain Starlight and some toys made by students from a local high school.
Alexandra, Charlotte and Victoria with the woollen toys.
The Starlight Children's Foundation also organise family events, such as the Starlight Express train which we had the opportunity to go on in November 2012. The train goes from Sydney Central station to Trainworks at Thirlmere where lunch and activities are provided, and then back to Central station.
The Starlight Express (XPT)
Captain Starlight playing games with the children at Trainworks.
Marshall playing in the fire-engine at Trainworks.
Fireman Marshall
Alexandra with face painted at Trainworks
Climbing frame at Trainworks.
Balloon art on the Starlight Express
Smurfette blowing bubbles on the Starlight Express
Charlotte with the food and activity pack on the Starlight Express.
Marshall on the Starlight Express.
Victoria qualifies for a wish from the Starlight Express. She has until age 18 to take up the offer of the wish. At this stage we have put the wish on hold until she finishes chemotherapy treatment.
1 comment:
Hi Wendy,
so happy that Victoria is getting bette made me feel so happy when I saw the photos of the family having a great time!!
lots of love and Happiness
Isabel Graham
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