Let's Help Betsy To See Again

£30,770 of £30,000 goal

Raised by 613 people in 25 months

"Those of you who know Keith and I well, know that our family is our world.

In May this year, our world was turned upside down when we received the devastating news that our darling, beautiful, comical, granddaughter Betsy, who is only two and half years old, had a large brain tumour - a diffused optic nerve glioma.

The location of the tumour means that Betsy's eye sight has been very badly affected and she has been registered as 'severely visually impaired (blind).' Glasses cannot help her eyesight.

An operation to remove the tumour is not an option for Betsy because of its location, so she is currently undergoing an 18 month intensive course of treatment at Great Ormond Street Hospital. The hope is to shrink the tumour and maintain her eyesight but the type of tumour she has, although benign, can be hard to shrink and there is a chance her eyesight could deteriorate further.

But there is hope for Betsy. There is research currently happening to improve vision for children with optic nerve gliomas including a drug called Bevacizumab, (Avastin) which has shown some good success in helping to improve vision in children with this condition. Unfortunately, the NHS is unable to fund the drug for Betsy at present. As a family, we are of course keen to pursue the treatment in order to give Betsy the best possible chance of improved sight. The 3 month cycle of Bevacizumab will cost £9,600.

We are also aware that chemotherapy may not work, and are therefore keen to raise funds for additional proton beam treatment, which Betsy could have when she is 3 in October.

There is exciting research happening to regenerate the optic nerve and Betsy's ophthalmologist has said that it is realistic that there will be something out there for Betsy in the coming years.

it would be fantastic that when any of these are on offer to Betsy that the funds are readily available so that we give her the best possible chance in life to have improved or full vision.

We aim to organise a series of fundraising events over the next 18 months; we are keen that Betsy's long journey ahead is filled with as much fun and positivity as possible. Those of you who have met Betsy, will know she will relish any opportunity to have fun and meet people!

I will keep you updated with our fundraising plans.

If anyone would like to donate, please click on the link below. Our heartfelt thanks in advance x
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Dear family, friends and all of Betsy’s kind Supporters,

A huge thank you to everyone’s continued support and interest in how Betsy’s treatment is progressing. Sorry it’s taken so long for us to update you; we have been wanting to make sure all details are correct before we gave you any news.

When we last updated you, Betsy was having a break after 18 months of weekly chemotherapy. She got to ring both ‘End of Treatment’ bells at both Great Ormond Street and Watford General! She also had her port (which administered the chemo and nurses took bloods from ) removed in April too.

Unfortunately, a month later, Betsy’s MRI scan in May, showed the tumour had grown significantly and it also had a cystic element to it.

We were always realistic that Betsy would most probably need further treatment, but so sad that Betsy has not had much of a break.

We knew that the plan would be that if the tumour grew again they would do a biopsy. So, a few days later, Betsy had a 5 hour operation whereby they successfully managed to take a small sample of her tumour. The wait for these results took ages! We were hoping that the tumour would show a mutation, which would mean Betsy could potentially start on targeted therapy rather than another 18 months of further chemotherapy. We finally received the call that Betsy had the Braf V600 mutation. This mutation does tend to behave “badly”, however it often responds better to targeted therapy. So, once Betsy had recovered from the biopsy she then had her port put back - more general anaesthetic! But this was a relief in all honesty, because up to this point, all of Betsy’s bloods were being taken through a Cannula, and despite Betsy being brave and calm the nurses and drs could not get blood from her! Betsy was so bruised and fed up, that the port was actually a welcomed return in the end!

We were then hopeful that the treatment would get started but we had another long wait! But we now understand what the hold up was. This trial treatment is now in to its fourth stage of development: Part A was one drug, Part B, the other drug, Part C both drugs together and Part D is both drugs with a change in dosage. So, as you can imagine every time the drug company changes something it takes a while for it to get accepted. So, Betsy will be one of the first children to be accepted on Part D. A natural thing to do is to think about “why didn’t we try and privately fund ourselves with the money we had raised and trial these drugs earlier?” However, if we had trialled it on Part A or B and then had tumour growth we wouldn’t have been able to go back on this trial. It sounds as if they’ve had real success with the combination of both drugs together, so as we always try to do, we look at this next part of our journey with positivity and hope.

The fact it is a trial has meant Betsy’s has had to put up with so
many tests before they could start, including another MRI earlier this month, which showed further tumour progression. The tumour is now putting further pressure on structures of the brain so we were relieved when treatment could finally start last Thursday. It was a very long and hot day at Great Ormond Street, but Betsy was a really trooper and took her medicines well, which means we can now give them to her at home. She will be monitored a lot initially, but hopefully over time we won’t have to do as many trips there.

The medicines are taking a bit of getting used to for us all- they don’t taste like strawberry Calpol! Plus you have to rejig the routine a bit as you can’t eat 2 hours before or an hour afterwards. However, 6 days in and we are getting used to it. Because it’s targeted treatment we are hoping the side effects will be much more tolerable. Rather than the breaking down of cells it works on breaking down the protein make up of the tumour. However, it is likely to have some effect on her skin. So Betsy’s skin will need to be very looked after and monitored closely. She has been told her hair might turn curly which she is very excited about!

Of course this is a new drug so long term effects are not yet known, but compared to other treatments this does seem the best option .
Although this tumour is low grade, they do behave badly- especially Betsy’s mutation, and with it being in the brain, we need to try and get a hold of the tumour and stop it from growing and causing further damage.

Betsy vision is still the same and she is still registered blind. Thankfully, she still has some useful vision and we hope that the tumour growth won’t cause any future damage and this treatment will preserve her remaining vision. Because Betsy’s optic nerves are damaged the team does not hold out much hope that her vision could improve if the tumour were to shrink. However, what is most important right now is to get the tumour under control. It has damaged her endocrine system too; she has low thyroid and is growth hormone deficient. She has started on thyroid replacement and will
hopefully be able to start growth hormone replacement once treatment finishes which is estimated to be between 18 months -2 years time.


So as you can see there has been a lot of information to take in - especially for Betsy who is now that bit older and asking tougher and more intelligent questions! Yet she still proves to be a fun loving, charismatic and resilient girl who isn’t going to let her illness define her.
She is doing well at school and received a very good end of term report. She is where she should be in all areas of development and exceeding expectations in some - amazing if you consider her vision and energy levels from the brain tumour and low thyroid.

She still has a huge passion for music and seems to enjoy Dolly Parton’s songs the most at the moment! We have to describe to her what Dolly looks like to her in detail, she then dresses up as her, listens really intently to one of her songs then gives us a full rendition! She recently made a recording of Coat of Many Colours at one of her Nordoff Robbins music sessions, we will hopefully be able to share the video with you all when it’s been edited. In the meantime, please enjoy the clip of Frank Lampard joining Betsy during one of her music sessions!

Betsy is also going to start drum lessons and performing arts classes in Semtember, as well as continuing with her swimming lessons - all being well with her skin. So life is not on hold, it just needs to be adjusted a little bit.

Thank you all so much for all you do to help us on this journey! From organising your own fundraisers, your donations, your time and love. We still hope that a lot of the funds raised will go towards stem cell research to give Betsy and others a real chance of seeing again. But In truth, we learn as we go on this journey that the amazing funds that together you have helped us raise maybe needed at any time.

Thanks again for all your kindness,

With love from Betsy and all her family

xx


https://twitter.com/lofootball/status/1022860597854126080?s=12
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Dear friends, family and kind supporters,

It has been nearly a year since we have updated you all with Betsy’s progress and our ongoing endeavours to fundraise for future treatments and research. It has been a year of highs and lows, testing even Betsy’s amazing resilience and attitude to the limit!

After Betsy suffered an allergic reaction to her initial treatment plan last December, she was switched to a different treatment. This has meant weekly chemotherapy, which is given at Watford Hospital where possible, but some trips to Great Ormond Street are still necessary. In Spring this year, Betsy had her hickman line removed (a tube which administers chemo to her heart) , as she was suffering constant skin infections, which made her little chest very sore. Having the tube removed, meant she could at last enjoy her baths again and go swimming, but also meant she had to have a plastic “port” inserted instead. This port has to be accessed at least once a week for her blood tests, chemo treatments and whenever she requires intravenous antibiotics, which have been needed quite a few times this year.

Betsy’s latest scan results from November, have shown no further reduction of the tumour, but that it is stable - this is a positive at least. November has also marked a big milestone in Betsy’s treatment plan. She has now had a total of 18 months of chemo, so, as planned, she will have a much needed break from it all. Betsy will have her next scan in February and the next steps of her treatment will be decided from there.

Betsy started school nursery in September and absolutely loves it! We all have to play Ms Jones (her teacher) with her non-stop! A bit hard on Nanny and grandad to have to sit cross legged, but we have to or we get told off! Betsy has been very lucky with the support provided from the vision impairment team in Hertfordshire, and has fantastic 1-1 support in class. Betsy is learning Braille. This is a huge challenge for her because it’s nowhere near as exciting as a child her age learning to read and write because we are surrounded by words the whole time. Plus the fact that the chemo affects nerve endings (temporarily - hopefully) so it makes it much harder for her fingers to be sensitive enough to feel those intricate dots. However, she will get there because she is so determined.


Over the year there have been some amazing fundraising events for Betsy’s fund:

‘Town Carols’ at Harrow School, who made Betsy their 2017 charity.

Little Cole & Ava Hardy who made jars of chocolate to sell and made a fairy for people to guess the name of

‘A Ball for Betsy’ thanks so much all involved. A HUGE team effort.

‘The Malden Brothers Band Night’

Terry & Joe Russell, ‘Everest Base Camp Trek’ - Thanks so much to ALL the Russell family for their support, organisation and amazing ongoing generosity to Betsy’s fund.

Kerry Hall ‘Family Fun Day’

Ali Brightwell ‘Reading Half Marathon’

Rachel Stone ‘Ravenscar Half Marathon

Sarah Pearson and Mandi McLauchlan ‘50Km Walk’

Toby and Tanya Clark ‘Laguna Phuket Triathlon’

Steph Cockerell ‘Hartbeeps Fundraisers’

Elodie Cockerell arranging ‘Wear a Hat Day’ to raise money for ‘The Brain Tumour Charity’

Linda Anderson ‘Betsy’s Bottles’

Zoe and Anthony ‘Grape Escape’

Sharon Griffin & Paddy Hayton “Let’s Boogie for Betsy”

A big thank you to you ALL and to everyone who has donated.

We would like to take this opportunity to thank you all for your support, friendship and love, we simply couldn’t do it without you. Your ongoing words of encouragement whether that be in person, by phone, text or email do really keep us going. The positivity and warmth we have felt at the fundraising events has been so uplifting.

We will be putting on more events in the new year - we will keep you posted.

We wish you a Merry Christmas and a very happy New Year. We will end our update with a video of Betsy ringing the bell at Great Ormond Street to mark the end of 18 months of treatment. We wasn’t sure about doing this as it feels like you’re tempting fate, but, Betsy loves a bell and why not ring it - she deserves to; she has come so far despite all she has had to face.

Lots of love from us all
X
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Dear friends, family and kind supporters,

It has been nearly a year since we have updated you all with Betsy’s progress and our ongoing endeavours to fundraise for future treatments and research. It has been a year of highs and lows, testing even Betsy’s amazing resilience and attitude to the limit!

After Betsy suffered an allergic reaction to her initial treatment plan last December, she was switched to a different treatment. This has meant weekly chemotherapy, which is given at Watford Hospital where possible, but some trips to Great Ormond Street are still necessary. In Spring this year, Betsy had her hickman line removed (a tube which administers chemo to her heart) , as she was suffering constant skin infections, which made her little chest very sore. Having the tube removed, meant she could at last enjoy her baths again and go swimming, but also meant she had to have a plastic “port” inserted instead. This port has to be accessed at least once a week for her blood tests, chemo treatments and whenever she requires intravenous antibiotics, which have been needed quite a few times this year.

Betsy’s latest scan results from November, have shown no further reduction of the tumour, but that it is stable - this is a positive at least. November has also marked a big milestone in Betsy’s treatment plan. She has now had a total of 18 months of chemo, so, as planned, she will have a much needed break from it all. Betsy will have her next scan in February and the next steps of her treatment will be decided from there.

Betsy started school nursery in September and absolutely loves it! We all have to play Ms Jones (her teacher) with her non-stop! A bit hard on Nanny and grandad to have to sit cross legged, but we have to or we get told off! Betsy has been very lucky with the support provided from the vision impairment team in Hertfordshire, and has fantastic 1-1 support in class. Betsy is learning Braille. This is a huge challenge for her because it’s nowhere near as exciting as a child her age learning to read and write because we are surrounded by words the whole time. Plus the fact that the chemo affects nerve endings (temporarily - hopefully) so it makes it much harder for her fingers to be sensitive enough to feel those intricate dots. However, she will get there because she is so determined.


Over the year there have been some amazing fundraising events for Betsy’s fund:

‘Town Carols’ at Harrow School, who made Betsy their 2017 charity.

Little Cole & Ava Hardy who made jars of chocolate to sell and made a fairy for people to guess the name of

‘A Ball for Betsy’ thanks so much all involved. A HUGE team effort.

‘The Malden Brothers Band Night’

Terry & Joe Russell, ‘Everest Base Camp Trek’ - Thanks so much to ALL the Russell family for their support, organisation and amazing ongoing generosity to Betsy’s fund.

Kerry Hall ‘Family Fun Day’

Ali Brightwell ‘Reading Half Marathon’

Rachel Stone ‘Ravenscar Half Marathon

Sarah Pearson and Mandi McLauchlan ‘50Km Walk’

Toby and Tanya Clark ‘Laguna Phuket Triathlon’

Steph Cockerell ‘Hartbeeps Fundraisers’

Elodie Cockerell arranging ‘Wear a Hat Day’ to raise money for ‘The Brain Tumour Charity’

Linda Anderson ‘Betsy’s Bottles’

Zoe and Anthony ‘Grape Escape’

Sharon Griffin & Paddy Hayton “Let’s Boogie for Betsy”

A big thank you to you ALL and to everyone who has donated.

We would like to take this opportunity to thank you all for your support, friendship and love, we simply couldn’t do it without you. Your ongoing words of encouragement whether that be in person, by phone, text or email do really keep us going. The positivity and warmth we have felt at the fundraising events has been so uplifting.

We will be putting on more events in the new year - we will keep you posted.

We wish you a Merry Christmas and a very happy New Year. We will end our update with a video of Betsy ringing the bell at Great Ormond Street to mark the end of 18 months of treatment. We wasn’t sure about doing this as it feels like you’re tempting fate, but, Betsy loves a bell and why not ring it - she deserves to; she has come so far despite all she has had to face.

Lots of love from us all
X

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Betsy would like to wish you all a very happy Christmas and thank you for all of your very kind donations this year.

We as a family have been so overwhelmed by the support we have received . So many of you have given up your time to fundraise yourself or with us, research for us on our behalf and helped us generate wonderful raffle and auction prizes. All of which fills us with warmth that we know so many fantastic people and it really helps us look towards a brighter future.

Since we last updated you 3 months ago, Betsy has continued to respond to her treatment. Her last MRI scan in November, showed the tumour had shrunk slightly again, which was positive news.

Unfortunately, Betsy suffered a very bad allergic reaction to her chemotherapy drugs a few weeks back, which whilst not totally unexpected, was a very scary experience for her.

She had to stay in Great Ormond Street overnight for monitoring and her treatment plan has had to change completely.
Betsy now has to have a different chemotherapy drug on a weekly basis.

Sadly, Betsy's eye sight has not shown any improvement and she is able to see very little , but on the positive side, it hasn't deteriorated in the last 3 months and she still has some functional vision.

Betsy's consultants are still gathering research before we decide to fund further treatments of Avastin ( the drug we have used some of our funds for)

We are continuing to avidly fundraise. We are working towards pioneering treatments to hopefully help Betsy's sight in the future - such as stem cell research . We would also like to help fund current research which is focused on more targeted treatments for Betsy's type of brain tumour, as it is sadly, highly likely to need further treatment even after this gruelling 18 months is over.

Betsy is an inspiration, nurses and Drs all say "Betsy is seriously the best". Her strength of character, coupled with your prayers and kindness, will get us through this.

A very happy 2017 to you all. We hope you enjoy Betsy's little video of Christmas songs!

☃☃
Betsy Singing Christmas songs
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Read a Previous Update
Rochelle Griffin
25 months ago

"With recent progress in stem cell research, neural stem cell therapy is emerging as a new approach that may be promising for restoration of sight after optic nerve injury. Attempts have focused on activating dormant stem cells, already present in the eye, to participate in the repair process in response to injury. In addition, it may be possible to harvest and transplant donor stem cells into the eyes of patients whose optic nerves have been injured, to replace the neurons that have been lost or to provide a permissive environment for nerve regrowth. Although these studies are still in their infancy, the field is progressing rapidly and may soon turn the stem cell approach into a viable therapy."

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£30,770 of £30,000 goal

Raised by 613 people in 25 months
Created June 29, 2016
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Rochelle Griffin
25 months ago

"With recent progress in stem cell research, neural stem cell therapy is emerging as a new approach that may be promising for restoration of sight after optic nerve injury. Attempts have focused on activating dormant stem cells, already present in the eye, to participate in the repair process in response to injury. In addition, it may be possible to harvest and transplant donor stem cells into the eyes of patients whose optic nerves have been injured, to replace the neurons that have been lost or to provide a permissive environment for nerve regrowth. Although these studies are still in their infancy, the field is progressing rapidly and may soon turn the stem cell approach into a viable therapy."

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