LifeCycleForNeuroblastoma

It’s a small world really especially when you can reach an audience in another country via social media. Last week I stumbled upon 60 year old Steve Taylor aka Von Schiehallion, the LifeCycle man.

Steve opens his blog with the following:

“The NCCA UK helps families affected by the childhood cancer, neuroblastoma. In most cases neuroblastoma is only diagnosed when it has already progressed to a late ‘high risk’ stage.  Even when children are tested clear of neuroblastoma after initial hospital treatment, a high percentage of children with high risk neuroblastoma will relapse and some children will not respond to therapy.

LifeCycle is an extraordinarily difficult challenge meeting an extraordinarily difficult disease head on.

Here’s the deal: The circumference of the earth at the equator is 24,902 miles. The LifeCycle target is 25,000 miles of commuting to and from work in 4 years. That’s the same as cycling from London to Manchester every week: but there’s also a thousand feet of climbing in each direction. That’s equivalent to climbing Ben Nevis twice a week on a bike. The route passes by Europe’s biggest onshore windfarm at Whitelee. There’s a windfarm on the Eaglesham Moor for a very good reason… And as if all that wasn’t enough, I was 60 when I started, and just over four years from retirement. The only way to complete this challenge is to never give up”.

Unfortunately our son was one of those high risk cases, and he did not survive. But almost two decades on and so much has changed in regards to treatment, clinical trials and awareness.

So I wish Steve all the very best on his journey to complete his goal, so far he has managed 14, 837 miles. He has a fundraising page you can take a look here https://www.justgiving.com/SteveTaylor-60/ and his blog http://lifecycleforneuroblastoma.com/ and you can follow him on twitter https://twitter.com/VonSchiehallion

 

the meaning of life is to find your gift

Neuroendocrine – what’s that?

Another great post by NET Cancer patient Ronny Allan -Neuroendocrine- what’s that?

Ronny Allan - Living with Neuroendocrine Cancer

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Earlier this week, I met some fellow cancer fighters and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn, I was already prepared to regurgitate my usual ‘spiel’. As sometimes happens, a listener queried me with the words “Neuroendocrine – what’s that?“.  Another focussed on ‘Neuro‘ enquiring whether my nervous system had somehow become cancerous.  Deja vu – here we go again!

Two days later, I was speaking to one of my on-line friends who was having similar problems explaining this cancer to family and friends. Again ‘Neuro‘ was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most people look at cancer in anatomical terms.

I’ve struggled over the past 5 years to explain this disease in layperson terms. It’s actually one of…

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Giving Back

Our family has been involved with the Women’s and Children’s Hospital Foundation (WCHF) now since 2012. After our daughter Tayla’s diagnosis that year, we decided it was well overdue that we fundraise and support the Paediatric Palliative Care Service, due to the death’s of our sons you can find out more about that here https://lovehopeandcourage.wordpress.com/about/

We have participated in the annual City to Bay Fun Run in Adelaide, and over the last three years have raised a modest $5,000.00. I also donate a percentage of the sales from my book ‘Through a Mother’s Eyes’ to the WCHF.

This April we were fortunate enough to be involved in the Team Kids Beyond Bank Easter Appeal in partnership with Channel Nine and it’s naming rights sponsor Beyond Bank. Held for the first time since 1989, the Easter Appeal held on easter monday raised over $2 million dollars for the Women’s and Children’s Hospital in Adelaide. It was an incredible day, although the weather was not kind it certainly did not dampen the spirit and deep pockets of the Adelaide public as businesses and individuals rallied for the cause. These funds will be directed into new equipment, research and services for babies, children and women who are patients of the hospital each year. Our family along with several others on the day were selling lottery tickets for the Team Kids family funds lottery at Adelaide Oval https://teamkids.com.au/easterappeal/p729.aspx. Funds raised from this lottery will be directed to projects for the Paediatric Palliative Care Service.

Last year the WCHF launched its official fundraising platform Team Kids…our story features with other inspiring families and their committment and dedication to fundraising for the Women’s and Children’s Hospital https://teamkids.com.au/easterappeal/p733.aspx

Barraeuresize

 

I salute you Rosie Batty

Australia Day 2015 marks an important era as four unique women accepted awards on the lawns of Parliament House,Canberra yesterday. Australia’s Local Hero of the Year Juliette Wright-Social entrepreneur, Young Australian of the Year Drisana Levitzke-Gray-Deaf Advocate, Senior Australian of the Year-Jackie French-author and my favourite Australian of the Year-Rosie Batty-Domestic Violence Campaigner.

I will focus on Rosie for a few reasons; as she has found her voice, and now a platform (Australian of the Year) as a victim of domestic violence in the cruelest of circumstances. She dedicated the award to her son Luke, and in her acceptance speech, vowed that her son’s death would not be in vain. This woman has been through the unimaginable loss of her young son, by her ex partner in a public place on February 12th 2014, here she is almost 12 months later, accepting the nations most prestigious award.

As a bereaved mother myself I share her pain, and her loss and part of her grief, I cannot profess to possibly understand how she has grieved that loss. I have never lost my son to a domestic violence dispute thank god, but I have lost a son to childhood cancer. Rosie has an opportunity, to act on behalf of the thousands of women that don’t have a voice in domestic violence. She is a role model and an inspiration to women all around the world, for she decided not to sit back, she took action, she spoke about her experience in main stream media, and people started to listen.

I hope that Rosie inspires many more Australian women in all walks of life to take action, we need role models & we need leaders. These are ordinary people doing extraordinary things. Rosie Batty has certainly inspired and empowered me. Who has inspired you? Leave your comments, let’s start the conversation.

You can read more about Rosie’s story here http://www.themonthly.com.au/issue/2014/october/1412085600/helen-garner/mother-courage

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Our Little Monkey – guest post by Cheryl Minniss

When asked to write a short story about our son Mason and his journey I said sure, I can do that… I have been trying to put down the words for the last few months, it’s actually very difficult to put it on paper your son’s journey in such a short story, but I will try.

Our son Mason was born in Cairns June 14th 2000, our first born and he was perfect. He grew into a happy carefree child, always smiling and enjoyed life and was just the best thing that ever happened to us, we then had Rohan in June 2002, Mason was so happy to have a little brother, they did everything together, inseparable, they were best friends. Always by each other’s side, they hated to be apart. When Mason started school Rohan started kindy and they also loved that they were so close, Mason used to come over each break and see Rohan through the fence. As his first year of school came to an end, we started to notice a few things were changing about Mason,  we didn’t really take anything too seriously as we thought he was just changing and school was all new and he had to adapt.

As things progressed and Mason went back to school we were following up on a few things our doctor had asked us to look into as he thought something wasn’t quite right with Mason, he was changing and he seemed to be regressing in a lot of his behaviour. After many months of psychiatry visits and trying different learning techniques we were sent to a Paediatrician for further tests. This is where our lives changed forever, Mason was sent for an MRI and as that came back with a possibility of 2 problems, we were sent down to the Women’s & Children’s Hospital, in Adelaide (WCH) for further tests, to pin point what his diagnosis was to be. After further tests our Mason who was about to turn seven years old, was diagnosed with Metachromatic Leukodystrophy (MLD);  a very rare Metabolic disorder.  We were devastated, we were told the most horrible news that a parent ever hears, our first born son, our absolutely perfect child had a metabolic disorder that has NO known cure, and our son was dying right in front of us.

We searched the internet, worldwide for any hope that we could find to cure Mason. We joined a MLD Foundation Family chat page and learnt more about MLD, sadly none of the families had good news. We were trying so hard to hold ourselves together for both boys, and we could see Mason changing before our eyes, almost daily. His behaviours were going back to a toddler stage, and our younger son started caring for him, like an older brother does. Rohan became VERY protective over Mason, he was the best brother in the whole world.

We were put in contact with Sara, head nurse for Paediatric Palliative Care, at the WCH. Sara is a lady we describe as ‘an Amazing lady who we hope you never have to meet’, she is an Angel that walks amongst us. Mason was with the metabolic clinic at the WCH, and as MLD took over his body we started seeing less of his Doctors and more of Sara. We nursed Mason at home, our family room became our hospital room, but we did have a few long stays in the hospital, which we were thankful to have the Sam Roberts room to stay in as a family. But as soon as we were able to we came home, this is where Mason was comfortable in his own surroundings and with our family. There was many a time we thought he was ready to leave us and we had to start to prepare that one day our boy was not going to be here, this is an unthinkable thought for a parent, and also watching his little brother losing his best friend.

We were given a ‘Journey’ folder from Sara and she told me that when I was ready to start to read it, it will help you understand what happens when Mason is ready. I finally knew I was ready to read it, (Rob never read it) and it did help me to understand although it broke what was left of my heart I knew what to expect. As the months went by Mason was in so much pain and we just wanted him to stop hurting. Our child should have never had to suffer as he did, his life was shortened by a hideous illness and we couldn’t fix him. The day that Mason left us, was just perfect for him. I believe that he had everyone around that he wanted and he was finally  out of pain, no more medicine, no more Doctors or nurses, he was at peace.

I cannot thank Sara and the Paediatric Palliative Care Service enough, the care and compassion they show to families is beyond a job. The knowledge these amazing nurses and doctors possess with the care of a child who they know will not be with their family for long is just mind blowing. These people see things, no one should see a child go through, yet they hold themselves with dignity and confidence and continue to help hold the families together as they feel themselves falling apart. The care continues after the loss of the child with bereavement support and also a sibling’s workshop with a play therapist which is such a special time for these brothers and sisters. To know that they are not the only ones who have lost a brother or sister, is very important. Rohan enjoys spending time with the other kids and I know the workshops help him a lot.

One thing I will always remember is that at Masons funeral Sara and Mason’s metabolic doctor attended, and they both said it was nice to see Masons photo’s, as they always meet them after they have been diagnosed and never get to see the happy moments and the smiles. I had never thought of that before and now I always remember those words.

We felt the need to help out others in some way after we lost Mason, we knew what these families were going through and although no amount of money raised could change the journey they were about to travel, we could make it a little more comfortable for them. So we formed ‘4in3’ The Mason Minniss Fund, with the Women’s & Children’s Hospital Foundation. The name 4in3 means we are now a family of 4, just in 3 bodies. This is something our youngest son Rohan said the day we lost Mason and although he doesn’t remember saying it, it was the perfect name for our fund to honour and remember Mason.

We now fundraise to help comfort the families when they stay in the hospital. We have a couple of ongoing projects which help the families, the first is the ‘Masonette’, a comfort cupboard which is wheeled into a ward/room in the hospital and is filled with items of comfort that the families can use whilst they are staying in the hospital. They are allowed to take a lot of the items home with them, as we know even the smallest thing can be a memory that will be cherished forever.

We also help fund ‘Butterfly Baskets’ these are also filled with comfort items that the nurses can give a family when they are either staying in an area in the hospital or they can take them to the family at their home, sometimes a small gesture is like receiving a big hug.

We also deliver ‘Ro’s Holiday Hampers’ at Christmas to families of the palliative care service, who has a child with a rare disease, or bereaved families, this is a very special delivery at a time that the families are supposed to be celebrating being together.  Many of us, ourselves included just can’t face the shops and the crowds this time of year, so with our hamper being delivered it helps them not having to struggle to get to the shops, and pretend to be enjoying the festive season.

Our family is doing ok, we miss Mason EVERY single minute but we speak of him often.  Remembering special times which is lovely but also very painful, as his time with us was only short, ten years and ten months and four of those years he was very unwell. Sadly our memories are all we have now, but we feel him around us always.

As I try to keep this short I want to share that Mason had two favourite songs, these were songs that he always loved and sang and amazingly he chose these before he was sick but the words of the songs that became his life songs;

‘It’s My Life’ by Bon Jovi  and ‘Unwell’ by Matchbox Twenty

We miss our boy ‘ our Little Monkey’ Mason, this is a very short compacted note about our boy with a HUGE heart and even BIGGER blue eyes, who one day we will be with again, but until then I believe he will be around us always and take care of us from up above.

Our Journey With Zachary – guest post by Julie Fernandes

The following story was written by a friend and mother of two we both suffered the unthinkable here is her account…

I will never forget the day. The 3rd of March 2003. The day when our world came crushing down around us. A 9 o’clock appointment at the paediatricians to receive the results from the blood test our nearly 17 month old son had recently. Whilst Zachary appeared to be healthy and happy, he had not been achieving his milestones and was still not able to crawl or even talk much.

Zachary had already had a MRI scan and a urine test and so far all appeared normal but never in my wildest dreams did I think the doctor would say, “Zachary has Tay Sachs disease”. Unfortunately I had a vague understanding of this disease as I had been searching the internet for possibilities over the weekend but had dismissed this option immediately as the information stated it was predominantly found in Jewish people.

I remember saying loudly, “Nooooooo!” My husband didn’t know what it was so he was confused, however, I recalled the one fact that made my body go numb with grief. Children with this disease usually die before the age of 5.  The odds of this happening were extremely high, something like a million to one. The doctor, clearly not thinking straight, even said “it was like winning the lottery”.

My husband and I came home shell-shocked after the doctor attempted to explain all the technical details and what would happen to Zachary’s body as the disease progressed but we were unable to take most of it in.

Tay Sachs is a genetic disease and as I was 26 weeks pregnant with our second child, there was concern surrounding our unborn child’s health. The week that followed was a blur as we attended appointments with geneticists, genetic counsellors, specialists etc. We were overloaded with so much information, a lot of it being stuff we just didn’t want to know and although they were all kind, it was all so negative which made it all the harder to deal with. The baby was tested and due to the urgency of the situation, the results were rushed through. Thankfully our new baby was healthy which eased the situation but we were still racked with grief knowing we would never see our darling boy grow up.

We went through the whole gamut of emotions, we were angry, really angry, but who could we be angry at, it wasn’t anybody’s fault. We couldn’t help wondering, why did this have to happen to our child, to our beautiful boy? It just wasn’t fair! I remember both my husband and I wanting to shut ourselves away from everyone and everything. But the world kept turning, the sun continued to rise in the morning and set again in the evening. We did a lot of crying and we virtually lived on automatic pilot as we still had this happy little boy who needed to be fed and cared for. Family and friends were all told and most were speechless, not knowing what to say or do. I didn’t blame those who said the wrong thing, I am sure I would have been the same myself if I were in their shoes.

Once we got over the initial shock, we realised we needed to take action. We understood this disease was incurable but that didn’t mean that somewhere in this big world someone wasn’t already working on a cure.

We began to research possible cures on the internet and we contacted several hospitals and universities both in the United Kingdom and the United States. We emailed as many doctors and Professors as we could and although we did not receive positive news, we were grateful they took the time to respond to us and answer some of our enquiries.

I am sure that some of the doctors, nurses and therapists who attended to Zachary must have thought we were either naïve or perhaps completely stupid when it came to our protective nature and our constant fight to find a cure for this disease. We believed if you didn’t have anything positive to say, then we didn’t want you anywhere near our son. We were sick of having to constantly brace ourselves against any negativity as it just did not help the situation.  Even though we could see Zachary was slowly regressing, it was important to hold on to hope at all times. Without hope, everything about Zachary’s life seemed pointless; feeding him, caring for him, the sleepless nights, the therapists and the doctor’s appointments would all be a complete waste of time. We had to believe that Zachary would be cured and grow up to live a normal life one day otherwise we wouldn’t have been able to keep going.

As time went on, Zachary started to get seizures and his swallowing was also starting to regress. One night Zach gave us a bad scare and he aspirated on his medication. He was struggling to breathe so we called an ambulance and he was rushed to Flinders Medical Centre. Zach had to be intubated and sedated. Seeing him with all the tubes and attached to a monitor was awful, we thought we had lost him. The next day they transferred him to Women’s and Children’s and slowly they reduced the sedation and he woke up. My husband and I took it in turns staying with him and he was never left on his own.

The doctor’s encouraged us to put Zach under the Palliative Care team but we resisted as we felt it meant we were giving up. Unfortunately, a couple of months later Zach aspirated again. It wasn’t as bad this time so we chose to drive him straight to the Women’s and Children’s Hospital. He was kept in for a few days and monitored and after talking with his doctor again, we agreed to meet with the Palliative Care Team to see how they could help us. It was also becoming to time consuming feeding Zachary orally and we noticed he was starting to lose weight so we also made the decision for Zachary to be nasal gastric fed.

A nurse from the Palliative Care team was sent to our house and she was very kind and sensitive to our thoughts and feelings about Zachary and the care we felt he needed..

Putting Zachary in the care of the Palliative care team turned out to be a good decision. It meant we no longer had to drag Zach in the car to the hospital for appointments or even go there ourselves to pick up supplies. The Palliative Care team brought everything to our door. They came regularly to change his nasal gastric tube and supplied all of the syringes as well and provided us with any special dietary requirements Zachary needed. They supplied us with a suction unit and we could call them at any time day or night for advice if Zachary had a cold or if there was something that just wasn’t right with Zach. Although Zach was still a very sick little boy, it helped a little knowing someone else was able to help us when we were unsure what to do and they were sympathetic to our feelings when we felt stressed and worried. The Palliative Care team were not there to take over as we had first thought, they were there simply to support and be there when you need them.

Zachary passed away suddenly in my husband’s arms just a couple of weeks after his 6th Birthday. It was awful and shocking, but the fact he was being held by my husband and it was at home gave us a bit of comfort.

A huge hole was left in our lives, we had been caring for Zachary around the clock since the day he was born and then suddenly we had all this extra time on our hands and our darling boy was gone. The house felt so empty without him.

Each day passes into another and life goes on. Six years have gone by but for us the pain of losing Zach is still strong. You never ever get over the pain of losing a child, however, I do believe your coping skills improve as time goes on.

We have since had another son, however, the memory of Zachary will always be alive in our house. We talk about him often and every year we celebrate Zachary’s birthday by going on a family outing and each one of us releases a balloon in his memory for Zach to play with in heaven.

Our journey with Zachary was at times difficult and painful but it also taught us so much. We met some amazing people along the way and have made some new friends. We are certainly a lot wiser and understand that getting upset over stupid things is a waste of energy. Spending time with family and friends and loving each other and having fun is what really matters.

 

One In a Million

Back in October last year we were approached by Rare Voices Australia to be interviewed for The Advertiser here in Adelaide. Journalist Elisa Black came to our home and spoke to Tayla and myself about what is it like to be diagnosed and live with a rare disease. Tayla spoke candidly about what the last two years have been like, and gave the journalist an insight into life with a rare disease and rare genetic disorder. Statistics are approximately 1 in 1 million of the general population worldwide.

We have been told alone in Australia only a few children have been diagnosed with the same tumour and genetic disorder…I wish we had some more accurate statistics! Following our interview a photographer also from The Advertiser visited us a few days later and took some photos to run with the story.

Finally on Saturday (25th January)  in SA Weekend we and three other families had a chance to tell the general public about life and living with a rare disease. Let’s hope that the researchers, the health system, the public and the politicians can understand how under resourced and under funded rare diseases are.

We need to be better advocates for ourselves and educate and create awareness about these particular diseases, or else we face the very real consequence where our children as well as adults will die without life-saving treatment.

“Rare Voices Australia was formed in early 2012 as Australia’s National Rare Disease Alliance to promote health policy and a healthcare system that works for those with rare diseases. It is pushing for a National Rare Disease Plan, to provide clear national guidance on rare disease management and research, a coordinated response that can be delivered within existing resources, while helping promote research and diagnosis, treatment and care”.

“There are more than 7000 rare diseases and many have no formal title and are difficult to diagnose. People living with rare diseases can go years searching for an explanation for their symptoms. They begin to feel like hypochondriacs, that it is all in their head.”

Our story features below:

http://www.adelaidenow.com.au/lifestyle/against-the-odds/story-fnizi7vf-1226809636167?sv=9025cfa016eea741fbc7e51f74c485dc#.UuMXmMkDVJA.facebook

On the 21st and 22nd February in support of One In A Million – Australia’s Rare Disease Alliance www.gothetorrens.com.au will officially launch in Adelaide. Walk, jog or sprint the River Torrens Running Loop (4.2 km) in support of three charities FARA  The Unicorn Foundation and Captain Courageous Foundation.

Triple M will broadcast the event in the morning and ambassadors Richard Douglas from the Adelaide Crows and Angus Monfries from Port Power will be attending.

http://www.weekendnotes.com/go-the-torrens-sprint-jog-or-walk-fundraiser/

Rare Disease Day is 28th February and more on the events going on around the country can be found here:

https://www.facebook.com/RareDiseaseDayAustralia?fref=ts

Rare Voices Australia

http://www.rarevoices.org.au/

The Unicorn Foundation

http://www.unicornfoundation.org.au

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