26/5/2017 0 Comments Sumner Sleepy ThursdaySumner Sleepy Thursday 😴🤕
My had breakfast in bed fanx to Bay-Hesty 😍 But my can't get up coz sooo tired 😢 My port is looking better 🤕 & when my was in hospital 🤕 my made some crafty fings for Bay-Hesty & Torrie 🙄see pic's 🙄 Finally did 🙄 Then my had to go & see my kinesiologist 🤕 fell asleep 😴 Then my went to see Samantha Doyle at Fountain Therapies for some pro-biotics & Reiki 🤕 fell asleep again 😴 sorry Sam 😢 Then home & fell asleep 😴 Then went to k2 for squash 💪 & fell asleep 😴 Mum & dad got a personal donation & a really kind note 😢 see pic's coz the family didn't want mentioning 😢 your are sooo kind & you'll know who you are ❤ xx thank you 😍 After we went home for dinner 😍 mum cooked peppers onions chicken & homemade organic chips ❤ My didn't eat it all though coz fell asleep again 😴 Then another surprise for us from a very lovely kind family 😍 see pic's 🙄 Thank you sooo much Derek & Julie Smith for the Waitrose food hamper packed with organic goodies 😍 especially the strawberries 🍓4🍓sumner🍓 made mum 😢 ❤ xx After dinner Bay-Hesty & me went to play in the garden 🙄 was fun 🙄 Another DIPG warrior princess called kayla has lost her battle 🤕😢 But my still sooo tired 😴 & sad 😢 Dad won an award tonight at the Crawley Squash Club AGM 💪😊 more than he can do playing 🙄 lol also Crawley Squash Club made a donation towards my treatment fund 🤕 that they raised during the Club Handicap Squash Competition 💪😍 Dad says that there are soo many lovely kind people out there 😢 that are & have been helping us 😍 Thank you sooo much everyone ❤ Please remember there's 3 ways to help me immediately as follows 🤕😢🙄 1) Direct Donations 🙄 http://www.sunshine4sumner.com/ 2) Just Giving Page 🙄 https://www.justgiving.com/crowd…/Sunshine4SumnerInfusions2… 3) By Registering your online purchases it will donate when you shop & costs you nothing 🙄 https://www.easyfundraising.org.uk/causes/sunshine4sumner/ Sleep tight everyone 😴😴😴 Night night x ❤ x #sunshine4sumner #sumnerjourney
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26/5/2017 0 Comments Sumner WednesdaySumner Wednesday 🤕
My got up at 10 😴 Coz soo tired 🤕 All the others went to school & squash today 🙄 But not me coz my sooo tired & my vision is fussy & blurry 😢🤕 My left side is ok ish & not as bad as previous infusions 🤕 So hopefully my will recovery quicker this time 🤕 My got ready to try to go to squash but couldn't in the end 😢 Went with dad to collect Perry Malik Torrie Malik & then Bay-Hesty from school & my got to meet Kiera who wished me to get well 🤕 & that mum & her would make donation to my Just Giving Page later 🤕 fanx 😍x 😍x Also my squash buddy Sam Sypher won £5 from a crisp packet at a school cricket match 💪 & has said that he'll put it in my treatment fund 🤕😍 fanx Sam 😊 Thank you to Shyara Cheesmur for running her yoga classes on a Monday & donating 50% towards my treatment fund 🤕 fanx x 😍 Perry & dad had a squash team match tonight 💪 don't ask 🙄 Gone to bed at 8.15 tonight coz still very tired 😢 Please remember there's 3 ways to help me immediately as follows 🤕😢🙄 1) Direct Donations 🙄 http://www.sunshine4sumner.com/ 2) Just Giving Page 🙄 https://www.justgiving.com/crowd…/Sunshine4SumnerInfusions2… 3) By Registering your online purchases it will donate when you shop & costs you nothing 🙄 https://www.easyfundraising.org.uk/causes/sunshine4sumner/ Sweet dreams everyone 😴😴😴 Night night x ❤ x #sunshine4sumner #sumnerjourney 26/5/2017 0 Comments Sumner 5th infusion tuesdaySumner 5th Infusion Tuesday 🤕
Lots of waiting around 🤕 but finally got to ward for day 2 infusion 🙄 They got 3.13ml 🤕 add that to yesterday's 4.8ml makes a total of 7.93mls 🤕let's hope that blasts my dipg tumor 💪 away forever 🤕 Another DIPG warrior princess called Ellayna lost her battle 🤕😢 Sooo unfair 😢 Today Amir Mehrkar popped into the Harley Street Clinic to see me especially as he'd raised £300 running around the Isle of Wight 💪 to help raise funds towards my treatment fund 😍 fanx Amir it was great talking with you 🙄 Today my family did squash as well as exams 🙄 Luckily Dr Zacharoulis let me go home tonight & my got a cab from the hospital to the Wimbledon R&F Club 🙄 where we watched Curtis playing a Surrey Div 1 team match 😊 My aunty Tracy Evans-davies came to visit me today & came to watch the match as well 😍 fanx for playing connect4 with me today 😀 & helping me with the craft fings ❤ Sooo tired 😴 & my head feels fuzzy & my eyes not great 🤕😢 My don't like being ill 😢 Mum met Ted Baker of London when my was having MRI scan 🤕 but forgot to squeeze him for some monies towards my treatment 🙄 Oh well 🙄 Off to bed as very tearful 😢 & tired 😴 Please remember there's 3 ways to help me immediately as follows 🤕😢🙄 1) Direct Donations 🙄 http://www.sunshine4sumner.com/ 2) Just Giving Page 🙄 https://www.justgiving.com/crowd…/Sunshine4SumnerInfusions2… 3) By Registering your online purchases it will donate when you shop & costs you nothing 🙄 https://www.easyfundraising.org.uk/causes/sunshine4sumner/ Sleep well everyone 😴😴😴 Night night x ❤ x #sunshine4sumner #sumnerjourney 26/5/2017 1 Comment Sumner 5th infusion MondaySumner 5th Infusion Monday 🤕
Up at 5.15am 😴 to get a 6.10am train 🚂 No seats 🙄 Bay-Hesty went to Jacobs house to help dad with school runs 🙄 fanx Sarah Ellis & James for helping dad be in 3 places at once 😍 When my got there 🤕 my got to meet a therapy dog 😍 & made my own sunshine4sumner money boot box 😊 Then MRI scan 🤕 ................. 🙄 Dr Zacharoulis phoned dad to explain their findings 🤕 So the the tumor is stable 🤕 It's not spread & it's possible that my got a port infection 😢 Still not 100% sure though 🤕 Then aunty Yasmin Malik & Leonie Harris came to see me with some organic strawberries 🍓🍓Yaay fanx 🍓🍓 My got 4.8ml of infusion today 🤕 My left side was OK but my eyes were not good 🙈 & my very tired 😴 Two more DIPG warriors Antonio & An'Bria lost their battles 😢😢 so sad 😢 Dad's thinking of getting all our hands put in a cast as a keepsake 🙄 in a frame 🙄 My missed Mon squash squad today 😢 But the others went 💪 hopefully back training by Wednesday or Thursday 💪😊 Finally got moved up to a ward bed for the night but mum says the staff are are bit grumpy 🙄 Please remember there's 3 ways to help me immediately as follows 🤕😢🙄 1) Direct Donations 🙄 http://www.sunshine4sumner.com/ 2) Just Giving Page 🙄 https://www.justgiving.com/crowd…/Sunshine4SumnerInfusions2… 3) By Registering your online purchases it will donate when you shop & costs you nothing 🙄 https://www.easyfundraising.org.uk/causes/sunshine4sumner/ Sleep tight everyone 😴😴😴 Night night x ❤ x #sunshine4sumner #sumnerjourney 26/5/2017 0 Comments Sumner SundaySumner Sunday 🤕
Got up first this morning 😊 made my own breakfast 🙄 Then my had to go back to Brighton hospital for Antibiotics & Steroid infusion 🤕 Luckily Bay-Hesty came with me & dad 😍 We saw lots of minis driving down 😕 But this took longer coz of all the little cars. When my got to hospital dad got an email poem from Graham Stevenson 💪see pic's 😊 After infusion they took my cannula out 🤕 but my still need the meds 😢My glad Bay-Hesty cane it was more fun 😊 see pic's 🙄 After hospital we set off to watch a squash team that Curtis was playing in at the London Squash Festival at the Bexley Club 💪😊 Team lost the final 😢 but Curtis won 💪 Another of my friends called ninja Josh 😊 mum Anisa Charania made a collage of some pics of me & Bish Bash Josh 😍 Soo cool fanx x Then a nice surprise 😊 especially when we got to Fort Raj for our curry buffet 👳 Dad had invited Julie Smith & Derek to dinner as a way for us all to meet 😍& to treat them 👳 but Julie & Derek had other ideas 🙄 Ummm! My invited them to dinner one Saturday 😍 & we got a flower & some fresh fruit from them ❤ sooo kind & really pleased to meet them 😍 Off to bed early as my got to be up by 5.30am tomoz to go up to London for CED Treatment 🤕😢 Let's hope for good news dad says 😊🤕 Please remember there's 3 ways to help me immediately as follows 🤕😢🙄 1) Direct Donations 🙄 http://www.sunshine4sumner.com/ 2) Just Giving Page 🙄 https://www.justgiving.com/crowd…/Sunshine4SumnerInfusions2… 3) By Registering your online purchases it will donate when you shop & costs you nothing 🙄 https://www.easyfundraising.org.uk/causes/sunshine4sumner/ Sleep well everyone 😴😴😴 Night night x ❤ x #sunshine4sumner #sumnerjourney 26/5/2017 0 Comments Sumner SaturdaySumner Saturday 🤕
Hopefully going home today 🙄 Nice surprise coz dad came to hospital with Perry, Torrie & Bay-Hesty 😍 & dropped off the keys & some clothes 🙄 They didn't stay long coz all 4 were playing in the Lewes Junior Squash Open 💪 Unfortunately 3 of them got to the final but all lost their finals 😢 so Perry, Torrie & Bailey came 2nd & Heston was 5th My think it's quite good especially after the week we've had as a family 🤕😢 Finally my was allowed home 😊 but got to go in tomoz for cannula infusion of antibiotics 🤕 My was lucky that Julie Ogg came to pick mum & me up & take us home today 😍 fanx xx Curtis was playing in the London Squash Festival at the Bexley Club 🙄 Fanx to Nic Davies for holding a Sumner fund donation box at the squash event 🤕 which manged to raise £80 😍 fanx everyone that donated ❤ A squash friend called Sè aged 11 from Jersey has offered to cut off his long hair on the 3rd of June to raise monies for my treatment fund 🤕 Sooo cool Sè 💪😍 fanx ❤ see dad's fb timeline 🙄 Tonight we had lasagne, Salad, Chips & French bread 😍 mum used the meat bolognaise sauce that Tracey Giblett made for us ❤ & my aunty Yasmin Malik came for dinner with my cousins 🙄 My seeing double most of the day & finding it hard to focus 😢 on fings 🤕 After dinner we watched a family film 🙄 but my went to bed half way through 😴 Soo tired 😢 My sooo fed up & sad 😢 But glad to see my family at home 🙄 Thank you everyone for all your donations & support 😍 especially the last couple of days 😢🤕 http://www.sunshine4sumner.com/ Sleep tight everyone 😴😴😴 Night night x ❤ x #sunshine4sumner #sumnerjourney 26/5/2017 0 Comments Sumner HDU FridaySumner HDU Friday 🤕
Dad says sorry for delay in getting a post to you all 😢 But we'd been waiting all day for MRI scan results feedback 🤕 & it's been a bit hectic 😢 🤕 Phewww 🙄 My felt much better this morning 🤕 see clip's & pic's MRI scan was late but got done in the end 🤕 Mum stayed the night & dad came back this morning & made me laugh 😊 My had cereal & toast for breakfast 🙄 No school today coz they wouldn't let me leave 😢 Lunch wasn't too good 🙄 After lunch my got moved to normal ward 🤕 coz my Sat's were much better 💪😊 the staff have been good 😍 But won't let me go home 😢 Another dipg warrior princess Lucy lost her battle from Australia 🤕😢 Luckily Kevin Hendon made me a shield as Captain Sumner to help me beat this 💪😍 fanx Kev who looks grumpy buts quite kind really ❤ My still on all my antibiotics & steroids 😢 But much better 🙄 Finally dad got call about MRI SCAN 🤕 there might be some growth of the tumor 😢But we are still good to continue CED Treatment trial on Monday 🤕 Dr Zacharoulis was very pleased with MRI especially considering how ill my was yesterday 🤕 We have some chance to still try to beat this Dipg 💪 My not giving up yet 💪😊 especially with all the love & support that your all giving me 😍 Fanx everyone that's offered to help mum & dad to help our family 😢🤕😍Sooo kind ❤ Fanx to Tracey Giblett for picking up Curtis from college to help us today 🙄Coz dad couldn't be in 4 places at once 😢 Tracey also made us a bolognaise sauce for our dinner 😍 But dad's saving it for tomoz 🙄 When my home 😊 Curtis, Perry, Torrie & Bay-Hesty all made their own dinner tonight from left overs 🙄 Thanks to Mark Simpson for fitting our water filter 🙄 filters 😍 Riverfords also delivered another organic Vegetable & Meat hamper 😍 fanx Also thanks to Chichester Rackets Club for a donation that they raised on their last PSL team squash match 💪😍 fanx Jack & team 🤕 SORRY my scared everyone by going down hill so fastly 😢🤕 Dad read lots of well wishes to me this morning at breakfast ❤ fanx everyone 😍 My also had Reiki treatment this afternoon at the hospital 💪😊 My fell asleep 😴 Then nurse found a spare television for us to watch a Harry Potter Film tonight 🙄 Going to sleep now 🤕 My seeing double still though 😢 We will win this fight 💪😊 http://www.sunshine4sumner.com/ Sweet dreams everyone 😴😴😴 Night night x ❤ x #sunshine4sumner #sumnerjourney 26/5/2017 0 Comments Sumner ThursdaySumner Thursday 🤕😢
Hi everyone firstly we'd like to thank everyone for their love, kind words & offers help & support ❤ See clip's & pic's 🙄 which you may find slightly upsetting 😢 Sumner was struggling last night around 11pm he was up & we tried to comfort him but he was happy & sad & very unstable 🤕 We managed to settle him down as we did a few days ago 🤕 hoping that again he'd be ok in the morning 🙄 Unfortunately he wasn't 😢 he couldn't get up or out of bed 🤕 We called a local neighbour who's a doctor & she came to see Sumner & again this wasn't great 😢 We decided then to take him to A&E Haywards Heath 🤕 where we got turned away due to NO paediatric dept 🙄 was told to drive him to the Royal Sussex University Hospital in Brighton 🤕 Luckily they were amazing here & saw him very quickly 🙄 There's a lot more to our experience today 😢 But we'll not bore you with these details 😢 Sumner was showing observations of Pulse 45 bpm Blood pressure 90/50 ! All very low so the staff put Sumner on the following medication either orally or by cannula 🤕 & carried out a CT Scan 🤕 Vancomycin & Ceftrixone both antibiotics 🤕 Dexamethasone Steroids 💪 Levetiracetam for seizures 😢 We are hoping that his port has an infection & not symptoms of tumor growth 😢 Sumner will finally be having an MRI scan at 8.30am in the morning ❤ Today has been an absolute nightmare for all of us 😢 you included 😢 We are truly devastated by today especially as Sumner has been doing sooo well 🙄 to top this Curtis & Perry are both revising & sitting exams 🙄 but have both been absolutely amazing 💪 as has Torrie & Bay-Hesty in helping Cook, wash, dry, pack & clean 😍 absolutely sooo proud of them all ❤ We really need Super Sumner to beat this 🙄 so please however you feel 🙄keep him in your prayers & thoughts to help 🤕 as most of you are ❤ fanx you aunty Yasmin Malik for coming to see us 😍 Sorry for such Sad News 😢 he's definitely fighting this & when I left the hospital tonight 😢 he was stable with mum by his side 😍 but with no real change to his earlier obs 🤕 Thank you everyone for your thoughts, kind words & prayers ❤ http://www.sunshine4sumner.com/ Sleep well everyone 😴😴😴 Night night x ❤ x from Sumner 🤕 #sunshine4sumner #sumnerjourney |
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October 2018
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