The Beautiful Truth’s Post

Name: The Beautiful Truth on LinkedIn: #charity #deartobytrust #childhoodcancerawareness
Uploaded: 2024-08-27T11:00:10.710Z
Channel: The Beautiful Truth

The Beautiful Truth

5,967 followers

2mo

The Beautiful Truth has a commitment to telling stories of hope and purpose, to help bring about change for meaningful causes. Earlier this year we worked with The Dear Toby Trust to produce a short documentary film for their fundraising campaign. The Dear Toby Trust is raising money to support paediatric (childhood) cancer care and research in the UK, which is severely underfunded. The trust was established in loving memory of Toby Hambrook-Skinner, who sadly passed away at just seven months old from acute myeloid leukaemia (AML). In creating the film, we worked closely with parents whose children have been affected by these life-threatening cancers, telling their stories with compassion and care. You can watch the film and donate to the Dear Toby Trust to help find a kinder way and create a brighter future for children with cancer: https://lnkd.in/e88u66aJ Nathan Hambrook-Skinner Verity Hambrook-Skinner #charity #DearTobyTrust #ChildhoodCancerAwareness

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Expecting the mic? OK, hello, bit more relaxed. OK. You take the creases out the shirt and stuff, Yeah. Let's just say nothing to worry about. It's really informal chat. Tabe was born in August 2016. It was really hot and it was a big heat wave and it was honestly wonderful when he arrived. He was just just seemed like such a bundle of energy and robust and you know, you know, he was a he's a big boy when he was born. We've been wanting to have a baby for. Quite a long time actually, so it felt just like the most amazing thing really. I mean, it's all of the cliches, I suppose. It's kind of your world just comes crashing down. It's, you know. And he's got a cancer diagnosis at any sort of stage in life is clearly horrific. But it's just not something that that that you would expect with the little baby who's who seemed, you know, so full of energy and full of life. We were told, sort of. That he had this really horrible disease, that it needed systemic chemo. It's very hard for me to remember it's exactly what those moments were like because I just, that was just the worst day. Of my life. They said that they had worked out that she had something called juvenile myelomonocytic leukemia, for which they realized that the only cure would be a bone marrow transplant. The hematologist walked in and he said hello, I'm Mike, I'm hematologist. And I straight away said, oh God, is it leukemia? And he said we don't know that yet. We haven't tested, but we're thinking it could be. I think for Tabby, we were actually quite relieved when treatment started because to be honest, the disease had escalated so much. But then you have to sort of steady the ship because two weeks later. Is when the effects of the chemo really start to kick in and that means that his. His immune system has been absolutely stripped. When we were admitted into hospital that first day, she was dancing, she was singing. She was playing with her books, with her toys, with her Penguin, and she was a happy child. And within seven days, I would say she was immobile. And very, very, very ill. He had to have just an insane amount of pain. Sort of go through how every painkiller that you could imagine to. Manage his pain like I also understood when he was in pain and it was so obvious to me. Ironically, he wasn't in pain because the cancer was putting him in pain. He was in pain because of the chemotherapy. The balance when treating leukemia is you have to give enough treatment to kill all the cancer cells, but the cost of that is the toxicity of the treatment which these children undergo. The window of opportunity to Kiera child and is set on one side with disease and on the other side with toxicity and you have to get you have to kind of post the children through that little letterbox of opportunity to get them through to a cure they're toxic level. Of the drugs. Meant that she got, I mean, kidneys were impaired, she got liver disease. She got double pneumonia twice. Made a choice to. Put these drugs into her, we had no choice, but it was still something that we had, we had to do. It is powerful when you see these young children having to deal with what they deal with and. How they overcome the day-to-day challenges and the bravery that that takes to front up everyday. He was just making the doctors smile and laugh like he was six weeks old, but like a doctor would stick his tongue out at him and he would stick his tongue back and then smile and laugh. You know, we took so much strength from his approach, in his head, the way that he kind of dealt with what life was throwing at him. Children are amazing because, you know, even though they're going through the worst of things, you know, they'll often be smiling, playing, doing normal things that babies do. So sometimes you walk into the cubicle and you almost have to take a step back that you can't believe, one, this child has a devastating illness, and two, they're receiving such horrendous toxic therapy. What actually is there is a world where parents are living there like day in, day out, trying to manage this treatment that their children are going through and really difficult circumstances, sleeping on a camp bed if they're lucky. We would take it in turns so I would do a stint of four days and then Paddy would take over for the weekend so that one person could look after the other children. That was really, really tough as a family, just trying to. Just trying to manage and retain some. Hope that it was all going to be worth it. It's the staff and it's the play team on the ward that keep you going. You know, they become the people that you rely on and they also become the people that you don't have to explain anything to. So Toby had two courses of of the most potent chemotherapy you could imagine and. Relapsed on New Year's Day 2017. The time came that we decided to stop his treatment. And actually they made it that we could go up to the roof even though he was basically still having life support. And it was a really sunny day and we took off his mask then and his tube. And he died on the roof at gosh under the sun. So it was. Sad but beautiful. It was lovely to see her slowly but surely. Find herself again and we could be a family again, albeit with medicines and hospital visits. But. Day by day and week by week, she rebuild her strength and. We did get out the other side. We aren't through where we are officially out the other end. But we are deeply happy. We are deeply. Happy and grateful and. Celebrating him for all the people that have come together to help him. If it wasn't with us for long, but you know, yeah, the impacts that that he's made and and hopefully his legacy for the for the future will will be. All about hope and other kids not having to go through the same thing so. I certainly couldn't have endured what he injured and still smiled at the end of the day, but he did so. I think really it's about making sure that. We do what we can in our own small way to create some change. Um, and make the lives of other children better. In Toby's name, but also for every child who's ever had to go through it.

Verity Hambrook-Skinner

Head of Campaigns and Strategic Communications at Department of Culture, Media and Sport

2mo

It was such an honour to work with you and we are so grateful for all your support, fun and kindness. The film is so powerful and beautiful and everything we hoped it would be. Thank you from the bottom of our hearts.

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Very powerful video and story. Can see why this was your inspo Noah (Jonno McCartney). Well done. https://lnkd.in/gPv_NnMm

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*****CLICK THE LINK BELOW TO CHECK THE MULLET AND DONATE***** G’day LinkedIn land Hope your all thriving and basking in the final good weather this side of winter 🥶 My son Noah has a mullet that currently sits at 27cm in length and he has decided to after 3 years he’s had enough. We’re always looking for an opportunity for my boys to learn empathy we decided that we would donate his hair to someone. Resaerching away, Alopecia Australia came up in the search and we’re like mint… lets do that but under the search it had the worlds greatest shave further investigation was a must. We clicked on the link and said lets do that mate and raise some money for humans that really need it to help others. What an opportunity to create core memories around doing things in the service of others which can demonstrate the joy and fulfilment he can and will receive. Noah was quite hesitant around the idea so we watched YouTube videos of others raising funds for the Leukaemia foundation. In one video a beautiful year 12 student told her principal that she would raise $20k for the Worlds greatest shave!!! The Principals response was if you raise $20k I’ll shave mine with you. The young Lady raised $28K and watching the bond over having their heads shaved was incredible. https://lnkd.in/gPv_NnMm The power of video, Noah's apprehension and fear had been shifted, he was of to the races!! He has Now raised $3k in 2 weeks with the May 7th deadline approaching fast… If you can please donate through link attached and if money is tight currently which it is for most Australians words of encouragement and support go a long way for a 10 year old Big Love and thanks to you all Jonno #worldsgreatestshave #cancer #donate #empathy #love #charity #bloodcancer 😁

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