23/1/2017 0 Comments Sumner Money MondayFinally today we got the call from The Harley Street Clinic in London 🤕
We're booked in for the 2 hour Planning MRI SCAN this thursday 26th 🤕 Then booked in to return for CED Compassionate Treatment Operation this Sat 28th 🤕 😢 All as long as the MRI scan shows promising to be operated on & no further advance of cancer 😢🤕 & by the looks of it a spare £86,000.00 😢 We still managed a squash session even after having an amazing day trip with Bay-Hesty, Curtis Malik & mum 😍 We had a school trip to Harry Potter Warner Bros Studios 😍 Wow such fun as a year 5 & 6 trip 😍 Once home we had Cottage Pie topped with sweet potato mash & plenty of vegetables 😊 Dad's still poorly but didn't look happy today 😔 My guessing it's coz of these figures 😢 £86,000.00 cost of CED trial (attached) £51,776.70 total from 1st Just Giving Page £20,000 ish from personal donations to help £££s from people that only want it used to make Sumner happier, for gifts & trips out 🙄 £10-14,000.00 ish short at present 🤕 to pay for compassionate treatment 🤕 & then there's the regular monthly infusion costs once treatment commences 🤕£6,000.00 🤕 The good news is it looks like they don't need a deposit 😊 just the full amount 🤕😢 Tired now so off to bed 😴😴😴 Thank you everyone sweet dreams 🤕😴🤕😴 Night night x ❤ x Ps: DOES ANYONE HAVE JKs ROWLING'S NUMBER 🙄 Coz my love Harry Potter 🤕
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11/1/2017 0 Comments Sumner WedsToday dad's going explain a few fings 👳
We finally have had an appointment offered for Sumner to go up to the Harley Street Clinic in London 🤕 This Friday 13th 🤕 At the moment we haven't quite got enough £££ that we're aware of to go for the CED trial on compassionate grounds 😢 We're also aware of all the hard work going on around the country & abroad 😍Thank you 😍 The cost of the CED trial has increased somewhat due to its relocation from Bristol to London 🤕 good in some ways but not financially 🤕 The cost of the first part is around £80,000 that's to have an operation to fit a semi permanent port in Sumner's head by computer guided robot 🤕 which all future infusions will go through 🤕 There lies the extra costs because once on the trial to help prolong Sumners life 🙄 he will need monthly infusions which can take 8 hours or so to be injected 😢thus needing a High Dependency Unit Bed 🤕 in London £££ 🤕 Back in Sept we were led to believe infusions would cost around £2,500 🤕doable with all you kind people's help & support 😍 then £4000 is bantered about 🤕 Then just before Christmas £6000 😢 recently we read that it could be as high as £8000 😢 let's hope not 🤕 hey or we may as well give up now 😢 I know that some of you will be reading this thinking 🤕😔😢🙄 ? Stfu We will hopefully get a much better idea of costs on Friday 🤕 Clearly they think that the CED Treatment is shrinking DIPG tumors in some cases & helps to prolong life & reduce symptoms in others 🙄 however once on the trial we will have to find between £6 & £8K per month 😢 to continue 🤕 unless of course Sumner doesn't respond or deteriotes or isn't fit enough to stay or even be on the trial 🙄 Please please keep sharing & fundraising 😍 coz this is getting worrying 😢 Some people have asked if we were a charity that they could donate 🙄 Luckily there's a charity that can accept donations for Sumner on our behalf 🤕 & will ring-fence it specifically for Sumner's trial 🤕 phew 😢 So please if any of you know of any such companies or individuals that would like to donate via a charity please PM me Camron 👳 We've already had 2 donations applied in this way by the Horley Lions & an employee from legal & general 😍 Thank you 🤕 Anyhows usually busy day for the Malik's School 🙄 Squash 😍 Sustenance ❤ Sleep 😴 So please everyone don't think that you're involvement or donation is not worth while 😢 Because without you all in one way or another 😍 we'd be stuffed 😢 So if you need to ask anything or need to know how best to help please do ask, call or pm me 🙄 enjoy pics sorry for preach 😢 Sleep tight everyone 😴😴😴 Night night x ❤ x |
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October 2018
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