Gorgeous 2 year old, Louie Bell has been diagnosed with an aggressive, rare cancer - Embryonal Rhabdomyosarcoma, we would love your help!
Auckland
My gorgeous 2 year old nephew, Louie Bell has been diagnosed with a rare and aggressive cancer called Embryonal Rhabdomyosarcoma. Roughly only 3 cases are diagnosed a year in NZ.
From playing at his sister's 4th birthday party on Sunday 28th of April to sudden abdominal pain and distress on the Monday, biopsy's and MRI's throughout the week to a cancer diagnosis on the Friday- it all happened just so fast. We as a family have been living in a state of disbelief that this full of life, beautiful, kind hearted boy is battling this horrible disease. The past 8 weeks has seen the Bell family's world flipped upside down, but even through adversity this beautiful family's strength and love has never shone so bright.
Louie has a large tumor located around his bladder, prostate which also pushes back into his spine. The tumor is blocking his urethra so he has a permanent catheter which as you can imagine has it's own discomfort and challenges for a 2 year old little boy. Sadly surgery is not possible due to the risks associated with the location of the tumor. Louie has a fighting chance undergoing an aggressive treatment plan that has started already. He is administered Chemo weekly which will continue for at least a year, as well as radiation therapy.
My sister Maxine (Louie's mum) and brother in law Matt also have a 4 year old daughter Molly whose world has also changed overnight and whom we are mindful to help keep her life and spirit as happy as possible. This is a beautiful, loving and hardworking family who have been dealt a very tough and unfair hand.
By raising funds for The Bell family we hope to be able to take the pressure off them as a household and to hopefully put money towards Proton Radiation Therapy which is not available here. Louie is yet to get approval for this but if he qualifies it is available in America. He is getting amazing care and treatment here in NZ at Starship, we are VERY lucky in that regard, we just want to have all options open and bases covered if we can. Based on the location of Louie's cancer, proton radiation therapy lowers the risks and long term affects on Louie as it can be more targeted compared to standard radiation therapy . These risks include incontinence, infertility and impotence, as well as the standard radiation risks of future cancer's developing.
Other children with Louie's type of cancer have had amazing results with this therapy and we would love to be able to have this as an option to us, however it is not cheap at an estimated $345,000 NZD.
We would like to use this platform to also thank the beautiful support from friends and family that have rallied around the Bell's and the wider family. Words will never be able to express the gratitude we all feel to you.
Thank you so much in your consideration and assistance in helping Louie kick cancers butt!
#TeamLouie!!
I am an aunty to the gorgeous 2 year Louie Bell has been diagnosed with a rare and aggressive Cancer called Embryonic Rhabdomyosarcoma. By raising funds for The Bell family we hope to take the pressure off them as a household and to hopefully put funds towards Proton Radiation therapy which if he qualifies is available in America. He is getting amazing care and treatment here in NZ at Starship, we are very lucky in that regard, we just want to have all options open if we can. Based on the location of Louie's cancer, proton radiation therapy lowers the risks and long term affects on Louie compared to standard radiation therapy. We want to give the BEST POSSIBLE chance to win this battle. Thank you so much for your assistance helping Louie kick cancers butt! #TeamLouie!!
Helping the Bell family fund Proton Therapy in the USA and help ease the day to day living expense pressure.
A step in the right direction ❤️ 23 February 2021
This is an update from Louie’s mum, who posted on Facebook today. Thanks again to you all for your generosity and support.
Lots of love xx
It’s been a while since I did a Facebook update on our Louie. That’s because from May 2019 until November 2020 it was pretty much consistent bad news that I wasn’t willing to accept and saying it “out loud” was too hard, so I tried not to. But In November we got the first good news in a year and a half, despite being resistant to all the chemo they’ve thrown at it and the 6 weeks of radiation his tumour shrunk by 23%. It was unbelievable and honestly I just felt numb to it because it seemed too good to be true. He has been doing amazing since just after that scan, we’ve been able to take away the harsh chemo that requires a whole day of fluids with it, and he’s been able to be home a whooooole lot more than he has been since diagnosis. We got to go camping and have gatherings with friends and do “normal” stuff and he has blossomed into a social, and (mostly) happy little boy. A year ago I was lying in hospital beds next to him, broken and devastated by yet another blow and hearing words like palliative and prolonging life and wondering at what point the chemo was going to stop keeping the tumour stable and take my baby away. And then today we got some more good news after his latest CT scan, it’s shrunk again. Not as dramatically, but shrinkage is shrinkage and we will take this win and run with it ❤️ I know what’s working and it’s thanks to a few people for pointing me in the right direction I am finally feeling like we can breathe. We are not out of the woods and we still have a huge fight ahead of us but for the longest time we were told we couldn’t win and now maybe we can. I’m so proud of my Dino obsessed, hot chip fiend and I’m also so proud of Molly because this shit is rough and she’s been pretty amazing throughout.
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