Sophie R

20 February 2013

Story written 2013

Sophie is a happy go lucky, always smiling, little bundle of joy (most of the time!). She enjoys doing all things little girls love, especially her swimming and dance classes. Sophie started school last September and joined her brother Jack, who is 8, at his Primary School.

During May 2012 Sophie’s parents noticed a tremor in her left arm and, after numerous hospital visits and finally an MRI scan in June, the family received the terrible news, 2 months before Sophie’s 5th birthday that Sophie has a ‘supratentorial high grade glioma, bilateral thalamic tumour’. This is basically an aggressive brain tumour located in a very awkward part of the brain. The family has been told that the tumour is inoperable and the prognosis is very poor.

Sophie has remained brave in spite of everything and has always kept a smile on her face. She has already had two operations to relieve the pressure in her head and now has a shunt fitted. After searching the internet and looking for a cure Sophie’s parents decided to try a clinical trial. Sophie received a course of radiotherapy for 6 weeks and now receives the trial drug Avastin every other week and Chemotherapy every 28 days for a 5 day cycle. An MRI scan just before Christmas showed the tumour has reduced in size by 47% which is amazing progress.

Sophie continues to be an absolute star during all her treatment and travelling to Southampton. She amazes everyone with her strength, determination, calm acceptance and above all her endless energy. We do not know if it’s the standard chemotherapy, trial drug, the homeopathic, the supplements, the healing or the prayers that are keeping her going but we shall continue will all of them and will fight every step of the way.

Update 26th November 2013

At just after 8.30 last night our beautiful butterfly passed away. She was with her family who will always love her and treasure the time they had with her. She was strong until the end and made the world a better place. No wonder God wanted her.

Update 13th November 2013

Sophie had a special parcel arrive today from a Elf. The Elf left no name but we would like to say a massive thank you to the Elf as it was so thoughtful and kind to think of Sophie and to send early. Sophie sadly had a seizure today but she since has loved having some of the lovely White Snowman.

Sophie is deteriorating on a daily basis now and we are having to try and face the reality that our little angel is slipping from us. We have always known that the chance of us winning this battle was slim but we never gave up hope. We still have hope but now it is hope that she will not face any pain or suffering as she fades.

The seizures have returned and the recovery time from them is increasing with Sophie struggling to regain a normal breathing pattern. In between seizures she spends most of her time sleeping and it is a real struggle to talk. When she is awake she is aware of her surroundings and when she does utter a few words they are coherent and she makes sense. She is still our butterfly but we are aware that her time with us is nearly over.

She has given me so much over my time with her and I know that I am proud, and so very lucky that I was chosen to be her father. She has endured things that no child should ever have to and always with a smile… and normally a song!

She is loved by so many but none more so than Gemma, Jack and myself, and we hope that she knows this and knows that our love for her will always be there.

Update 3rd November 2013

We would like to say a massive thank you for everyones continued post that both Sophie and Jack receive. Big smiles from both of them for the chocolate they received this week from a lovely lady who did not send an address. We are sorry we have not replied to everyone but Sophie is now very poorly and time seems to be fly past each day. As Sophie’s body starts to fade her strength and determination is amazing. We draw comfort from that she is currently pain free and happy. Thank you all so much.

Update 19th October 2013

Thank you everyone for Sophie’s and Jack’s post. We cannot thank you enough. I am sorry we haven’t replied lately. Sophie has deteriorated over the last month physically and can no longer walk unaided and is suffering from seizures. It is heartbreaking to watch our little girl fade but she continues to smile so we do too. She is making us so proud and her strength and determination is beyond words. Thank you all so much.

Update 14th August 2013

After a couple of very long days in hospital we finally brought our beautiful butterfly back to the island. The doctors confirmed that she does have shingles and a possible line infection however both are being treated and shouldn’t take long to clear up.

Sophie braved her MRI yesterday with her usual confidence and never ending smile and today we received the results. In a nutshell, Sophie’s tumour has doubled in size since Christmas and it is working its way up into her brain and down onto the brainstem. It looks at this stage that there is nothing more we can try on the treatment front, however, I promise you all we have not given up looking. We are faced with the very real facts that Sophie may well have only a few short months at the most.

We know our little girl is a fighter and has shown us a strength that I would never have believed possible and whilst we are in her corner battling every minute of every day we are trying to come to terms with the truth that it is a battle we cannot hope to win.

We are focusing on her birthday next week and beyond that on a daily basis making sure she wakes each day with a smile and ends it in the same manner.

Update 3rd June 2013

We have been so busy the last week that we have not sent our last replies. One of which was a massive thank you to everyone at Post Pals for the massive parcel that arrived full of exciting things. Sophie and Jack were so happy and it arrived after a long day at hospital so was a lovely surprise. Thank you so much for all your continued support.

Sophie has a MRI scan on Monday 10th June which happens to be 1 year to the day they scanned her on the Isle of Wight and rushed her by ambulance to Southampton. The day that changed our lives. But the doctors only gave Sophie 1-2 years, so she is doing amazingly well. The last scan 3 months ago showed the tumour to be a stable so we are praying that the results bring the same news.

Update 10th May 2013

Sophie is doing really well at moment. It is coming up to a year since she was diagnosed and with her consultants prognosis of only 1 to 2 years she is doing amazing and making us so proud. She continues on her Chemotherapy and trial drug Avastin and is due chemo all next week so we have our fingers crossed for a good week.

When not in hospital, Sophie is like any other 5 year old, she loves going to school and playing with her friends. Sophie really enjoys being outside and is looking forward to some nice weather so she can go to the beach.

We would like to thank everyone at Post Pals for being so kind to Sophie. She loves receiving post. Some lovely post arrives without return addresses and Sophie would like to say a big thank you to you all.

Update 1st April 2013

During March Sophie had an MRI scan to see how things were processing. We were pleased to be told the tumour is stable. The Consultant is very pleased with Sophie’s progress and the way she tolerates treatment. He cannot tell us how long the tumour will remain stable so we are making the most of every day. She will continue with her treatment of the trial drug Avastin in Southampton every other Monday and standard Chemo a week of every month. In between treatment Sophie is enjoying every day and even managing mornings at school.

Sophie now understands Post Pals and how fantastic it is. She looks forward to the Postman arriving and will try and read some of the post herself. Sophie and Jack have both had some lovely Easter gifts from some lovely people. Both have great fun writing and making things to return. The arrival of 2 of Dotties litter this month was also very exciting. It has been lovely to get some repeat post and getting to know some lovely people more.

Update 4th March 2013

We cannot thank everyone enough for all the kind letters, cards, notes and gifts that both Sophie and Jack have received in the first few weeks. Everyone has made them feel so welcome.

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Charlie B

01 February 2013

In April 2011 Charlie, aged just 10 months, was diagnosed with Acute Myeloid Leukaemia and within just 4 months he had already been through four intensive cycles of chemotherapy to try to beat the Leukaemia.

Despite the treatment Charlie relapsed and was desperately in need of a bone marrow transplant. Charlie had a BMT after cord blood match in America was found and he was doing well, but sadly the cancer returned in September 2012.

The doctors said Charlie could have a second transplant but in October they said there was nothing more that could be done. After lots of research a drug trial was found and Charlie started on it, the treatment didn’t work but he has been accepted onto a second trial.

Currently, Charlie is in HDU with pneumonia, he needs to improve to be able to have the new drug for his Leukaemia.

Charlie loves cars, he even drove the wedding rings down the aisle at his parents wedding and also loves Thomas the Tank Engine. He is also proud of his beads, each one is a procedure he has been through, they show what a brave boy he is.

Update 8th February 2013

We are sad to say Charlie passed away today.

Update 3rd February 2013

Charlie has a collection of fluid around his lungs, he had been given medication to try and remove the fluid but he continued to have breathing difficulties. He was moved to PICU last night and placed on a ventilator.

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