Please help 2 year old Louie kick cancer's butt
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!
Jessica Farrow 's involvement (page creator)
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!!
Use of funds
Helping the Bell family fund Proton Therapy in the USA and help ease the day to day living expense pressure.
It has been 9 months since Louie was diagnosed and about 5 months since all of you generous people donated to our page. Again we thank you so much! I thought I would give you an update on the huge fight Louie has been battling.
Louie has been in a bigger fight than we anticipated with many complications, infections and heartbreak along the way. Too many to list now. The biggest blow to date was in November when we found out that all the chemo and radiation Louie had undergone had not been working to shrink the tumour. Whilst there was evidence of a small amount of death to this horrible and large tumour, it had still continued to grow. This is very rare and shows just how aggressive Louie’s cancer is. Some options were given to Maxine and Matt and they decided we cannot give up yet and Louie started a very strong chemo in early December. Through it all he has been such trooper and he still has his loving, kind and beautiful spirit about him.
On Tuesday this week, Louie had another scan. As you can imagine the anxiety levels of our family were through the roof. All we have had since Louie’s diagnosis has been bad news after bad news. However, on Tuesday afternoon we got a glimmer of hope we had been begging for...
The tumour has shrunk!!! Granted , not by much but this is the first time we’ve had any form of good news from a scan. The death of the tumour looks a bit less but the oncologist has said that’s not really a problem because a little bit of shrinkage is what we want. It doesn’t mean too much yet but hopefully this is the start of better news. Louie will continue with this heavy duty chemo and also add back in some of the chemos from his last protocol, so there are weeks and months of a brave battle ahead for him still.
We will take this small victory and hopefully it turns into a big one!!!
Thanks again for keeping Louie and his family in your thoughts. We hope
To update you again in a few months with more positive news.
Lots of love from Jess and All of Louie’s Family xx
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This page was created on 26 Jun 2019 and closed on 31 Jul 2019.