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Please vote for Solving Kids' Cancer in the My Favourite Voucher Codes March charity of the month poll. It’s free to do & there's no sign up. Simply click the link below & select Solving Kids' Cancer from the poll on the right hand side of the screen:...
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THANK YOU! 😘😘😘
Shared from Solving Kids’ Cancer (charity I work with). Whilst I shared this news the other day what I didn’t say was that Dr John Maris is also the Deputy Chair of our recently developed Scientific Advisory Board! We really have THE VERY best involved with SKC to help move forward towards better outcomes for children affected by the disease Jamie had. Jamie you’ll be proud gorgeous boy that all your lovely Doctors worldwide are dedicated to finding a cure. One day... 💙💙🙏🎗🎗🎗💙...
HUGE congratulations to Dr John Maris of the Children's Hospital of Philadelphia, Deputy Chair of our Scientific Advisory Board, who was recently honoured by the National Cancer Institute with an Outstanding Investigator Award. This recognises accomplished leaders in cancer research who are providing significant contributions towards understanding cancer and working towards a breakthrough in clinical research.
Great news for one of the leading clinicians in the field of neuroblastoma. Very proud to be able to say he was Jamie’s oncologist! 8 years ago we were heading out to CHOP for 6 months on one of Dr Maris’ clinical trials. CHOP will remain in my heart always.
Congratulations to our very own Dr. John Maris, recipient of the National Cancer Institute's prestigious Outstanding Investigator Award. Not only is Dr. Maris a... favorite among our patient families, he also leads one of the strongest neuroblastoma research teams in the world. Read more about our important work. #forbreakthroughs
A beautiful boy and a story of hope despite everything. On this day 5 years ago, hundreds of people filled York Minster to join us to celebrate Jamie’s life. It was so painfully beautiful. His zest for life will always be remembered and I’ll never forget struggling to get started with my reading to him and then as I did, the sun came out and lit up the area where Jamie and I were. He is everywhere still; the breeze we feel, the sun we see, the snowflakes that may slowly come ...down and the robins in our garden.
Childhood cancer needs more awareness and change. For neuroblastoma I truly believe things will change, advances in research ARE happening. But for children like Jamie whom have helped shape the research landscape of this terrible disease, we will never hold Jamie in our arms again. That is the most difficult thing to comprehend - for the rest of our lives. We will however hold Jamie always and forever deep in our hearts. Poppy will always have a big brother guiding her and we will continue to work alongside like-minded others to make a difference. To make a change for children affected by aggressive childhood cancers. 💙💙💙👼🎗🎗🎗
So much goes on behind the scenes at team SKC HQ. Tomorrow is one of those 'so much' days for sure as we CONTINUE planning for the 2018 Neuroblastoma Parent Education Conference! We listen to feedback all the time and appreciate all the comments we received from the 2017 conference to inform our next one!
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Tidying up and found this which Jamie’s sister wrote for me last year on Mother’s Day - ‘I can’t see you because I am in heaven but I can send you a letter...’ A beautiful, thoughtful and caring little girl! Am so proud of her! 💗💗
5 years of eternal sleep. 5 years today - 5 ways to describe this amazing boy:
Missed beyond words - ‘hope you are painting the Heavenly skies with gold Jamie as you are pure gold to us..’ 💙💙💙 xxxxx
Jumping up and down on his bed - well why not! None of us knew when this photo was taken that Jamie’s life was simply going to change forever with a diagnosis of enormous destruction.
5 years ago Jamie had hours left. The most poignant of all consultations with the medical team had taken place. The room was full - we were all seated in a circle and amongst the tears (medical staff included) we began to prepare.
Knowing ‘when’ certainly helped us say our goodbyes but beyond ...that - it was the toughest and sickening feeling. There was no jumping on the bed for Jamie - instead he had a visitor that night in bed with him in the intensive care room, Mummy. All night mummy laid next to him just watching and holding his hand. It was a restless night and a busy one for Jamie and his Drs but he became much more settled. By 8.00am the following morning I was able to leave him to get showered and dressed and let ‘the day’ begin. Knowing that those last hours, together, in the midst of the night were something to carry in my heart forever. The next day was going to be full of people dropping by to say their goodbyes. So much love. Pure love for our Power Ranger! So let your children jump on their beds, let them bounce until you fear they are going to come through the ceiling and for all you mums and dads - do sneak a moment to lie down next to your child and immerse yourself in the world of just You and Your Child😘😘😘😍💙💙💙
WONDERFUL memories! We were lucky enough to stay at Give Kids the World back in 2011 for Jamie’s Make-A-Wish holiday. This marked what we hoped was the end of treatment completely for Jamie! Despite the fact I managed to delete all the Disney experience off my camcorder once home 😢 - we did have some photos of our trip! Always a bright side 😘 Miss this fabulous boy very much. 💙💙💙💙
It still astounds me just what was happening 5 years ago. Whilst I feel slightly detached at the moment (self-protecting mechanism for sure!) in my heart the love for little Jamie is bursting. On reading back the post below it reminded me just what a fighter Jamie was. Jamie’s condition changed almost every half hour. No hour was the same really. We’d just get through one complication and then another in the queue would surface. Every single time, Jamie fought back. It became... impossible to keep people updated at that time! January can be the dullest of months but 5 years ago whilst there was no visible sun, just snow I recall thinking the sun is still there...it’s still shining somewhere. I looked back at Jamie - he may be on life support but he is still here. 5 years on- no visible sun/son but both are there, somewhere...
In my imagination, my thoughts can take me anywhere and it’s safe. Just like a candle held in front of me - to show us where to go and how to get there. The sun may not be always be seen but it’s there and Jamie is there too. A truly incredible child who means so much to us. 💙💙💐💙💙
I just can't write anything that's fantastic news. I am so cautious with any improvements and we get a little bit of good news then worries again. That really i...s the essence of our days at the moment so I have decided that for now whilst everything remains stable, I will not elaborate further. As soon as I formulate a post it is history. Perhaps over the next week or so there will be a marked improvement in Jamie's lung function. He has now had an infusion of John's stem cells and T cells and these need time to work. We have had small improvements and for that I am grateful! Jamie is truly amazing and I love him so much however, I am finding it increasingly hard to see him on ECMO. I thought now that I am used to it I would feel better but it suddenly creeps up on me. Yesterday was a hard day...not just for our increased worries about Jamie in the morning but for another young family on ICU. To see and hear other people's pain when a child is lost is just so sad and reminds us how vulnerable Jamie is. On the flip side it makes us more determined and we speak words of encouragement to Jamie, telling him how he can pull through this and that he is loved by many!!
Thanks to Jamie’s Godfather Tom Hardie for sharing this so I could share with you... January is tough beyond words. This little boy had so much to give this world, so very much...💙 Thanks to Karen who made this video at the time. Xxx
As the heavenly anniversary approaches I see more and more pictures and videos of my Godson Jamie.
Here is a beautiful video that shows the highs and lows of J...amie's Neuroblastoma Treatment and the journey he had. It shows why thousands and thousands of people from all corners of the world took Jamie into their hearts and donated to send him to Philadelphia, USA and also Tübingen, Germany for Immunotherapy and Stem Cell Treatments. For that we will be forever grateful as without the treatments Jamie would never had the quality of life he had. 😀
Keep Jamie Smiling was the name of his charity appeal. You will see from the video why!
I'm making this post public. Please free to share and spread word about Neuroblastoma and maybe just maybe it may help bring attention to another child and family that need help.
I can’t comprehend how time whizzes by yet still feels real time? 5 years ago - I spent Jamie’s last awake moments opening his Christmas cards with him. We’d had some slight hope that he could stay off the life support and go back to high dependency on his stem cell transplant unit. Within an hour of moving him and with him still awake things went downhill too fast. The last thing he did before ventilation beckoned again was open Poppy’s card. He smiled. The biggest smile. He... knew who it was from. He loved his little ‘Popster’ as he called her. As we moved Jamie and got settled once again in intensive care the following hours were intensely emotional - happiness and gratitude amongst the sheer sadness of Jamie’s situation which was now desperate. THAT Christmas Eve memory will never leave me and so it shouldn’t! As Hark the Herald Angels Sing played in his room in the background we placed gifts at the bottom of his bed and sat with him for most of the evening. Jamie’s Dr spent ages with us talking, with compassion, empathy and reality of the desperate struggles ahead. Yet amongst all this was smiles, laughter and the feeling that not only did everyone care about Jamie but people cared about us - as Jamie’s parents. Our resolve and resilience was certainly being tested to the max - as was Jamie’s. Sending my love to every family who walks these same shoes - no matter how hard it is just know that there are always people thinking and caring. That means everything to us and still does. When we set out Jamie’s tree and lights at his resting place yesterday I felt a sense of achievement - we’ve come this far and so far. There’s still a long way to go and there always be but loving a child such as Jamie is going to hurt forever without him here. We were blessed to have him and loved him like no other. A peaceful Christmas to everyone. Xxxx
Helen Pearson, a Clinical Nurse Specialist based at the Royal Marsden Hospital, is looking for parents/guardians of children with neuroblastoma to support her i...n designing a new research study, which will look at how parents make decisions about their child’s treatment path.
Parents/guardians of children who are in any stage of treatment, or who have had a child treated for neuroblastoma in the past, are welcome to participate in a meeting on Saturday 10th February in London. This is a Patient Public Involvement (PPI) meeting which will aid the development of the research question, design and methods; parents/guardians are not required to participate in the study directly.
If you would like to find out more, you can contact Helen at email@example.com. Helen has shared that travel and costs will be reimbursed.