Terasa and Kirsty are arranging to go back up to Bristol Children’s Hospital on Tuesday 21st with some more Goody Bags for the children. They will also be meeting up with Anna Shepherd from the Wallace and Gromit Appeal. Details to follow .
Below is an update on an email SPT have just received from a Clic Sargent Social Worker called Anne who works at Bristol Royal Children’s Hospital. She contacted us recently to ask Sam’s Trust to help provide 10 year old Jack who had relapsed with Ewings Sarcoma ( a rare bone cancer ) for the third time and is now palliative. His mobility is very restricted and he is having to cope with a fair degree of pain. Both his parents are not able to work as are both caring for him 24/7 so finances are very limited and they wanted to get him a notebook so he can watch his favourite films, listen to music, be in touch with his friends etc. However , because of his fatigue , a notebook was lighter for him to manage rather than a laptop.
Sam’s Trust brought the Notebook Jack wanted and sent a cheque for £200 to his family to buy some shopping or something else they needed.
The Trust is receiving on average one request a week from Bristol and Gloucester Children’s Hospitals requesting help for children suffering from cancer. So far the Trust has never said NO and more importantly doesn’t ever want to. We want to be the charity that ‘Likes to say Yes ‘.
Thank you for all your continued support – we just wanted to share this story with you all because we think it hi lights the important work that the Trust is undertaking.
Below is an email we received from Anne, a Social Worker at Bristol Royal Children’s Hospital :
Dear Colin and Terasa,
I just wanted to let you and the Trustees know that I visited Jack ( the young man you recently gave a notebook too ) at the Hospice yesterday. He is very poorly now but is able to still enjoy watching his beloved Man U matches and the notebook allows him to stream his Sky TV from home and he can then attach the notebook to the big screen at the Hospice and watch all the matches, including last nights which was brilliant as Man U finally won. His parents wanted to Thank you so much for this as it means so much to him and them.
I wanted to ask if you can help get an IPAD for a young girl, who had a medulloblastoma brain tumour in 2010 and then a relapse in 2012. She has undergone chemo, surgery, radiotherapy, high dose chemo and a bone marrow treatment and her treatment finished the end of last year ( 2013 ).
As a result of her diagnosis and the above treatment she has been left with long term complications and has on-going cognitive, endocrine and neurological difficulties. Her speech is affected and she has skin problems and has substantial hearing loss requiring her to wear hearing aids. She continues to have regular follow up appointments and is under a variety of specialists and consultants, not just with Oncology.
She returned to her local Primary school but has a Statement of Educational Need and has multi agency involvement to ensure her needs are being met at school. However she is struggling to keep up with her peers as she has difficulties with handwriting and processing information despite having a 1:1 TA and needs lots of support at home with her homework. She would like an IPAD that she could use in school and at home to make all this easier for her.
Her mother has tried to access an IPAD through education but is finding it a long drawn out process because it wasn’t specified in her statement, and she still hasn’t been given a definitive answer and asked me for help in getting one for her daughter who just wants to try and keep up with her peers. Her mother hasn’t yet been able to return to work because of all the hospital appointments and needing to be around for her daughter as she is exhausted trying to keep up with going to school, so finances are limited as there are two other siblings.
Please let me know what other details you need from me if you are able to help.
Best Wishes Anne.
Sunday 27th April : The Wolf Run Challenge
Helen Walters and her Team will be taking part in The Wolf Run Challenge for The Sam Pilcher Trust. This is a 10 kilometre run with a difference. There are many obstacles to tackle from crossing over tyres, climbing over hay bales, and wading through lots of water and mud. So it is going to be a very messy challenge.
There will be a group of people taking part from ‘Mode ‘ MSPA’, and Helen from Smoothas.
The Wolf Run will be taking place on Sunday 27th April, if you would like to sponsor / Donate to this challenge , please click on our Justgiving page above.
The Sam Pilcher Trust would like to Thank everyone involved for supporting our Trust, and wish them all the very best of luck.
For any information on The Wolf Run please click on the following link: http://www.thewolfrun.com/info/
The Sam Pilcher Trust has now set up an online Just giving web page where you can sponsor any of our events that we hold, or if you would just like to Donate to the trust you can now do so by just clicking on the link below, or using our Just Giving page above.
We were greeted by our dear friend Jackie, who was a great support to all of us while Sam was in the ward. Here she is holding a cuddly tiger we brought and which is now going to be a new mascot. We went into the Activity Room and gave out the goody bags to the children. One of the lovely patients we met was Lydia. Lydia has been through an awful time having been diagnosed in July with a form of bone cancer. Osteosarcoma and had a tumour in her ankle, which has meant her leg had to be amputated. However, as can be seen by her photograph after being through all this she still looks beautiful and her strength and courage is something that is constantly in our minds since we met her and her brave mum. Here is Florence, Lydia’s sister with a Sam Pilcher Tiger
After we continued our tour and saw another room that is used for school activities, Sam’s painting is now proudly on display. Here is Max in front of the painting holding another Tiger. In the corner of this room are a collection of books that included the Art books that we took to the hospital on our last visit. Martyn said they may be looking a little dog eared but we are glad as it means they are being used and enjoyed and the Trust will only be too happy to buy new ones when necessary.
We next visited the Primary Oncology Ward where we met younger patients and the play specialist, Jeanette Sevier. She also looked after Sam while he was in hospital and helped to keep his spirits up with play activities, here she is holding some Goodie Bags and a mini tiger. After this we briefly went to the Day Care Unit, dropped in some more Goodie bags and met some Doctors we hadn’t seen for a long time. As the name indicates this unit is for children undergoing treatments and procedures that require a shorter visit.
Finally, our tour finished at the school room where we met some more Teachers from the Hospital School. This is a temporary school room as a new one is currently under construction. Martyn has invited us to visit when its completed.
Here we also met Anna Shepherd, Deputy director of the Wallace & Gromit Grand Appeal. The Appeal has many wonderful plans to help the hospital. Anna is going to send us a ‘ wish list ‘ for their current plans and we’re going to meet again in the New Year to discuss further.
We left the hospital glowing but absolutely shattered. However, Martyn sent us this lovely email, which confirms how worthwhile our visit was. It has also highlighted how much more there is for Sam Pilcher Trust to do.
Hi Colin / Terasa
Hope you enjoyed your visit here last week. I know that the patients enjoyed the afternoon very much.I was just going to say that I thought I would mention your charity at our Oncology meeting, I was going to point out to the social workers that you had an interest in supporting families as well as resources for the hospital.
I hope that this is okay as I was going to give out your email and it could be that you get call quite soon.
What has been happening?
November 2013 – Visit to Bristol Royal Children’s Hospital
On 28th November Colin, Terasa and Max visited BRCH to see the newly opened Children / Adolescent Oncology Unit. Sam Pilcher Trust was involved in the planning of the unit and donated a small amount towards the staggering £3.5 million cost.
Martyn Carter from the Hospital’s school met us and kindly gave us a tour of the new unit. Martyn was marvellously supportive to Sam while he was in hospital. Terasa particularly remembers Martyn reading Robinson Crusoe to Sam when he was too poorly to do anything else.
It was thrilling to see how amazing the new unit now looks. We were able to meet some of the patients and their families, which was wonderful but also very emotional.
We brought goody bags for the children that included: a mini cuddly tiger, a book, the new Christmas Tiger Chocolate Bar ( courtesy of Heidi and Tony from the Cotswold Chocolate Company ) and a gift voucher.
We went into the Activity Room and gave out the goody bags to the children. One of the lovely patients we met was Lydia. Lydia has been through an awful time having been diagnosed in July with a form of bone cancer Osteosarcoma and has a tumour in her ankle, which has meant her leg had to be amputated. However, after being through all this she still looks beautiful and her strength and courage is something that is constantly in our minds since meeting her and her brave mum.
After we continued our tour and saw another room that is used for school activities, Sam’s painting is now also proudly on display. In the corner of the room are a collection of books that included the Art books that we took to the hospital on our last visit. Martyn said they may be looking a little dog eared but we are glad as it means they are being used and enjoyed and the trust will only be too happy to buy new ones when necessary.
We next visited the Primary Oncology Ward where we met younger patients and the play specialist, Jeanette Sevier. She also looked after Sam when he was in hospital and helped to keep his spirits up with play activities. After we briefly went to the Day Care Unit, dropped in some more Goddie Bags and met Doctors we hadn’t seen for a long time. As the name indicates this unit is for children undergoing treatment and procedures that require a shorter visit.
Finally, our tour finished at the School Room where we met some more teachers from the Hospital School. This is a temporary school room as a new one is currently under construction. Martyn has invited us to visit when it’s completed. Here we also met Anna Shepherd, Deputy Director of the Wallace & Gromit Grand Appeal. The Appeal has many wonderful plans to help the hospital. Anna is going to send us a ‘ wish list ‘ for their current plans and we’re going to meet again in the New Year to discuss further. We left the hospital glowing but absolutely shattered. However, Martyn sent us this lovely email, which confirms how worthwhile our visit was. It also highlighted how much more there is for Sam Pilcher Trust to do.
Hope you enjoyed your visit here last week. I know that the patients and parents enjoyed the afternoon very much. I was just going to say that I thought that I would mention your charity at our Oncology meeting. I was going to point out to the social workers that you has an interest in supporting families as well as resources for the hospital. I hope that is okay as I was going to give out your email and it could be that you get a call quite soon. Martyn.
December 2013 – Bourton Late Night Christmas Shopping Event
On 6th December Sam Pilcher Trust was the Nominated Charity at Bourton Late night Christmas shopping event. It was a very successful evening for the trust.
Thank you so much to Will and Lucy from Wreal sports and Bean and Kirsty from Bensons Juices for making it all possible for the Trust. They also ensured that Colin and Terasa were interviewed for BBC Radio Gloucestershire and Cotswold TV to further promote SPT.
Special Thanks to Chris, Suzie, Tony and Emma who travelled all the way down from Kent just for the day to help on the stall.
Also, the launching of the candles was a wonderful sight and we thank Mike Boyes for his amazing photography that captures this so beautifully. ( Photos to follow )
Spirit of Stow Christmas Shopping Event
On 7th December Sam Pilcher Trust helped with the Park & Ride at the Spirit of Stow Christmas Shopping Event. The trust made the tidy sum of £350. Thank you for all the helpers who made this possible, especially Sam’s old mates: Toby, James, Ben, Oscar, Alfie, Alec and Max. Also Stow Cotswold Festival Committee who recommended the Trust after we did the car parking at the Festival due to our ‘ organisation and Professionalism’.
Registration & Web Site
We are very pleased to say that the Trust is now registered by the Charity Commission, the registration number 1151779.
The web site is now up and running too and can be viewed at sampilchertrust.org.uk. It is still being populated with information and photographs but is looking really professional. A special thanks to Andrew Stevens and Helen Keegan for their efforts to get this on line.
Sam’s Winter Hero – Jane Eeles
Jane helped support the trust when we carried out Car parking duties at the Spring Stow Fair. Jane has had a very difficult time as her daughter Danielle was born with Di George Syndrome. This is a Chromosome Disorder and is a horrible illness that affects the Heart, Lungs, Bowel, Speech and Immune system. It meant that Jane spent the first year of Danielle’s life in Bristol Royal Children’s Hospital. Danielle who is now almost 18 had had to endure many operations and will continue to need treatment for the rest of her life. mainly due to her heart condition. We send our love to Jane and Danielle and wish them both a very Merry Christmas and a much healthier and happier New Year.
Children & their Families that the Sam Pilcher Trust has Recently Helped
The Following provides an update of some Children / Families that the Sam Pilcher Trust has recently helped. These children have all been introduced to SPT by Clic Sargent social workers:
1. A 17 year old boy suffering with Leukaemia was struggling with travel costs to/from Bristol Royal Children’s Hospital for 8 weeks of Radiotherapy. Sam Pilcher Trust has granted £400.
2. A 15 month old little girl has Wilm’s Tumour and is reacting violently to her Chemotherapy treatment and is constantly vomiting on the carpets in their home. Sam Pilcher Trust has granted £388 towards the cost of buying and fitting laminate flooring ( Clic Sargent is covering the balance ).
3. A 16 month old little boy with a brain stem tumour was living in an overcrowded house. Clic Sargent has helped to find a larger home for the family and Sam Pilcher Trust has granted £250 to help towards the removal costs.
4. A young lady treated with a brain tumour has started a child care course. She is doing OK at the minute but she and her family are aware that the tumour will return but not when. Sam Pilcher Trust has agreed to cover the cost of a new lap top to help her on her child care course. The Trust sent Charlotte a cheque to buy an Acer Aspire laptop together with a Microsoft package.
5. Colin Terasa and Max went for a meeting with Dr Dilys Neil and colleagues from Gloucester Royal Hospital, two young people who are currently receiving treatment and their families. The meeting was hospitably hosted by Dean Clos School. The plans are to provide a major refit of the Teenager’s Activity Room, Treatment Cubicles and kitchen facilities in the Oncology Unit at Gloucester Royal Children’s Hospital.
6. A young man recently diagnosed with Leukaemia and about to undergo a BMT really wanted an I pad to help keep him entertained and in touch with friends etc. Tragically, his mum passed away last year and his Father hasn’t been able to return to work since, the Trust gladly brought Daryl an I Pad 64GB.
7. Another terrible tragedy the Trust has been informed is of a young man called Jack who was treated with Leukaemia when he was 7 years old and underwent a Bone Marrow Transplant. Devastatingly , two months ago he was suddenly diagnosed with a Brain Tumour that is thought to be the result of the Radiotherapy he received as a child. Jack is now terminally ill and is trying to make the most of his last months of life. All Jack asked for was a new Play Station as his last one broke. The Trust has brought Jack a new Play Station 3 with Grand Auto Theft.
8. A baby only 3 months old has recently been diagnosed with Acute Lymphoblastic Leukaemia. His treatment will be mostly at Bristol Children’s Hospital including his BMT. His father is self – employed and finances are problematic and they have no family living in the UK. The baby needs a substantial pushchair due to his condition. Also, the baby is going through extra nappies due to the side effects of the Chemotherapy. The Trust is helping towards the cost of the pushchair and nappies.
‘ Thank Yous ‘
Here is a selection of the very touching thank you letters that we have received from these lovely people. We don’t need Thanks – we’re just so pleased to have helped. We just thought it would be good for our readers to know of the little bit of difference the Trust has made for these children in their very difficult lives.
Hi, I would just like to thank you for sending me a playstation, it has made a massive difference to my life as I have recently finished radiotherapy and feel tired a lot of the time so it gives me something to do indoors and helps me to relax, it is very kind of you and I really do appreciate it. Thank you once again ! Best wishes Jack Richards
Thank up it arrived today !!
First time I have seen Darryl smile in days !!! He asked me to say a big Thank You to you…x
Thank you for your email and your kind words in the newsletter. The gifts you brought were lovelyand a real highlight of our last stay. We were lucky enough to be given one of the large tigers and Lydia’s sister Florence adores it. Prior to Lydia’s operation they shared a room but since the amputation Lydia has been sleeping in a room downstairs. Florence has missed her desperately and the tiger has become Flo’s firm bed time favourite. I even get instructions on what to feed him when Flo is at school.
Lydia showed me some of Sam’s art work on the ward … just beautiful. I am constantly amazed by the people and families we have met since Lydia’s diagnoses. Seeing how others cope and loved life despite serious illness and loss is inspiring. Best wishes Hazel
Dear Terasa, I just wanted to write and thank you so much for your kind help towards Charlottes Laptop. We have managed to now get online, after a short delay, due to Charlotte’s health.
She is so pleased with it, its really making such a massive difference for her. She is able to do her course work in the quite of her bedroom away from the bustle of the rest of the family. She likes to boast how fast her laptop is compared to our family computer. So just what she needed. Thank you once again for your generosity yours sincerely Michelle Francis
Friday December 13th
Sam Pilcher Trust would like to say a big Thank You to all involved at The Cotswold School who very kindly agreed to hold a non school uniform event for us. They raised a fantastic sum of £615. Thank you for all your support.
Who could resist one of our beautiful cuddly Tigers for a lovely Christmas gift! If you would like to purchase one for somebody special at Christmas, and also help raise money for our charity, then please get in touch with Sam Pilcher Trust by either calling us on 01451 822770 or emailing us at firstname.lastname@example.org £20.
Sam Pilcher Trust has been chosen to be the charity supported at the Bourton Christmas Shopping Evening on Friday December 6th, starting at 6pm.
We are going to float some candles down the river !
You can buy one from our stall and write a dedication on it. All candles will be released at 6:45 , should look great in the dark.
If you can’t make it on the day you can buy one at Wreal Sports in advance and we will send it for you. Lots of things going on : Brass Bands, Santa, Christmas Mascots, Lights being switched on, maybe a celeb or two !
BBC Radio Gloucester is going to be broadcasting the event live and wants to talk to Sam Pilcher Trust. Also, Cotswold TV is going to be there filming along with other reporters.
So please come along, buy a candle, wave at the cameras and have a good time !!!
SPT would like to say a huge Thank You to The Cotswold School who have very kindly agreed to hold a Non School Uniform event for us on Friday 13th December, details of how the event went to follow.