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Summers fight against luekimia, Bottesford (2025)

28/11/2021

Hi everyone sorry I havnt updated for a while summer was doing good for some weeks but these last 8 weeks shes had constant infections and had very horrendous headache she was booked in for routine lumber puncture on Thursday where they give chemo in her spinal fluid to protect her brain from leukemia at this appointment we found out summers pressure was more then double what it should be and this is why she's been suffering from headache blurred vision and blackouts after speaking to the doctor as my first concern is relapse but won't know until next week if the results xome back negative for leukemia and infection it looks like she will have idiopathic intracranial hypertension and this is likely caused by both the large blood clots she had on her brain so she will most likely need more fluid drained and medication and if confirmed she will be on these medications for life she has an emergency eye appointment to make sure the pressure shes had for months hasn't damaged her optic nerves and will need an appointment with neurology once the results are back and it's not the leukemia al give u all a full update once I have the results back and no the plan moving forward

15/08/2021

Just wanted to share some positivity shes back enjoying her teenage self loving life again qm so in awe of how amazing she actually is 😍😍

25/05/2021

So.today she hot the best milestone she finally made it to maintenance 294 days of intense chemotherapy 294 days of pure hell not just for her but for me and Jamie Brown ro witness our baby fight so hard for her life in those 294 days we were told to prepare but what we have been through no amount of preparation would of ever helped in those 294 days she has spent 99% in hospital now she has maintenance she should now spend 99% at home and also get her life back she still has daily chemotherapy up until December next year ( without any hiccups 🤞) but she should start being more and more herself honestly can not be more proud of how far she has come ❤

30/04/2021

And she is home after a very long stay in hospital since January minus a couple of nights shes finally home back smiling and laughing even though shes coming to the end of intensive part of her 3 years of treatmant the affects off being stuck in a hospital bed has taken its toll and she has lost alot of muscle in her legs could mean casts or even surgery but this kid has been through the works since August so alot of physio should be a doddle for her shes Done absolutely amazing to pull through things even when the doctors were concerned we call her the cat with 9 lives 😍

08/04/2021

So update in summer shes still in agony from the pressure on her brain sheffield has been in talk with Leeds as ct results show the clot has grown in the last week even though shes been on blood thinners to stop this from Happening Leeds specialise in these sort of things as its very rare to get a thrombosis in the brain especially in children and she may need an op to remove it but this comes with its own complication as its in the brain so the plan is to keep monitoring her and is she gets any worse she will be looked at again and if she does need the op this will most likely be done over in Leeds in the mean time pain team are looking at maybe injections into the head to try and block the nerves to give her some relief from the head pain or to even put her on methadone as shes been on multiple opiates for pain and nothing is working and being on these type of drugs long term can have multiple knock on effects now neither of the 2 options are an easy decision and the plan for these have to go through multiple networks to be approved as she is a child and they don't give these out willingly so summer will be in hospital again for some time and in the mean time she has been put on yet another chemo hold

02/04/2021

A little update on summer
As of yet no life threatening affects from the clot shes still in alot of pain has blurred vision in her eye but no seizures shes still under 24/7 watch because if she does have a seizure the quicker she gets the help the better
The longer she goes without anything the better gives time for the medicine to stop it from growing and also for her own body to start breaking the clot down on its own
She still feels terrible and had some tears this morning (if am honest think shes sick of been babysat 24 hours a day and been woke up regularly)

29/03/2021

Absolutely gutted so took summer in to be checked today as she hasn't been right all weekend she has an extensive thrombosis on her left side of her brain after nearly loosing her when she got the first one the right side me and her dad are in bits but shes in hospital where they can keep a close eye on her and more waiting until specialists look over her results tomorrow will try to keep you all updated

27/03/2021

This is reality this is a 14 year old who just over 8 months ago was so independent we couldn't do anything for her she was so social that even going out with her parents was embarrassing THIS is our new reality our 14 year old daughter being carried to bed as shes so weak and so ill she can barely walk or even stay awake
8 months my child has been going through chemotherapy 8 months I dont think there has been a single week where she hasn't spent at least one night in the hospital and tbh it's getting to the point when it's becoming lucky if she does get a night at home
8 months our whole lives have been around everything she needs 8 months of constant battles for her and she fights so hard so bloody hard
8 months since diagnoses and shes nearly died twice
8 months and shes had more drugs then most of us have in a lifetime in 8 months shes had nearly 60 bags of blood products
In 8 months the NHS has spent 100s of thousands if not millions on keeping her alive in 8 months we have spent nearly 15 thousand pounds just in hospital car park fuel and food
8 months my child has fought so hard to live and today shes so weak shes so frail I sit and watch her while she sleeps and wonder how much more a 14 year old child can take before she can't take no more
EVERY cancer child's journey is differant and unique to them but in 8 months my daughter hasn't caught a break
In 8 months nurses and doctors have become our new family
In 8 months I hope to look back and know that it's all been worth it and every pill every tear she has shed every hair shes lost every needle thats been inserted has all been worth it
In 8 months I havnt wished for anything more then my daughter just to be her again 💔
(P.s she has shorts on but looks like she hasn't hence the heart )

20/02/2021

So I just wanted to update you all as I havnt done so for a while
Summer has been in hospital for nearly 4 weeks now with a constant battle she first was admitted for d and v as a precaution as summer suffers with dehydration quite often so wanted to make sure she didn't within 24 hours summers kidneys decided not to play ball and had stage 3 kidney failure the amazing doctors and nurses at sheffield kept her comftable and was doing everything they could to turn them around (which they did) she got severe mucositus along side so bad she couldn't swallow talk or anything was in so much pain she had a rang of opioid medication drivers in the end it was best for her to be put on hdu for stronger medication as she was in still so much pain after 2 nearly 3 weeks the kidneys are back working and mucositus has subsided but then had a build up of fluid around her left lung which caused the lung to collapse so shes been struggling with her breathing she then had a drain put in to release the fluid and pressure of her lung and now she has fluid build up on the right lung at the minute nothings being done other then to keep an eye on it as the biopsy from the left lung showed no infection
So over the weeks summer has had many blood product transfusions shes been on a number of pain meds including paracetamol( and anyone knows this is a no no as it hides temps indicating infections) but they had to try and controll her temp as at one point it they couldn't get it below 38/39 even after paracetamol shes been on and still on a number of antibiotics even though no infection is showing to be precautionary she has sent doctors into frenzy with how much she's had going on with no indications to why and we have been told summer would have to be more closely monitored with future treatments ( didn't think that was possible as the care they give is amazing anyway) she's had many of differant little things along side but to many to list
So basically shes bee through hell last few weeks and I suspect she will be in for some time still until she's 100% better her chemo has been put on hold until she recovers
As shes been in bed laid up shes struggling with her mobility but the physio are on it to try and get her back on her feet stable again as soon as shes comftable to do so lung wise

10/12/2020

Summers results are in and her mrd test has come back nearly half of what it was so no need for bone marrow or car t cell for now woo hoo so back Tuesday for plan looks like she will be carrying on with the treatmant plan of chemotherapy with maybe some immunotherapy 😍
On a negative note as her mum i am worried about the results just because of how quickly it changed in a week with no chemotherapy but not going to dwell and just take the bit of good news we can get right now

04/12/2020

So a little update as some of use on here arnt close freinds and family
Summer has been in treatmant since August she has been through induction which is alot of strong chemotherapy to rid off the leukemia at tge end of induction she still had a large amount of leukemia left so she was then put onto regimin c which is the highest ( this means she will have more intense future treatmant for longer periods of times compared to those on regiman a or b ) and was then moved onto consolidation this block lasts 10 weeks i think a little longer for summer as she had to have a couole of breaks due to low counts and being poorly but this block is even more chemotherapy what the doctor called the big hammer to finally get her to a leukemia count that wasn't visible or even to a level to move onto the next block of chemotherapy
Unfortunately this isn't the case with summer her leukemia count is still to high to continue with the chemotherapy and the plan this isn't the end there is still 2 options left both of which come with some pretty serious side effects (more tgen chemotherapy on its own ) these options are car t cell therapy and or bone marrow transplant now both of these will mean that summer and myself or her dad will be living away from home for some time so she can have the decided treatmant
Her doctor is amazing I can not fault him one bit he is the most caring doctor I have ever met and understand why he was head hunted
After speaking to summers doctor he has assured me that neither of the tratmants should start before Christmas so we should get Christmas all together the bad news is summers % of beating this has dropped nearly half but its not something we as a family are going to dwell on she is amazing and strong shes been through alot already and turned anything thats been thrown at her around within days

30/11/2020

Summer is feeling great just lately her appetite is back and her littlest cousin is her new food sidekick always sat munching together

17/11/2020

So summer still isn't home and is now on even more antibiotics after getting a high temperature through the night shes had a chest xray and ultrasound on ber tummy today to see if there's anything in there causing her tummy ache and pain in her left chest area dont know any results yet there also discussing whether summer can have bone marrow biopsy thursday as shes not well and has no neutrophils i really hope she does as the last few weeks have been torture as we don't know whats next as it all depends on her next mrd test

Update shes not getting her biopsy done now so we are actually gutted as this is one is prob most important 😪

15/11/2020

And she has it in first attempt today smashed
Just wanna say how amazing she is how strong she is we really don't know the strength of someone until its the only thing they have to do not just summer but all the kids that have to.go.through chemotherapy and fight for there lives i am in awe of there strength 🥰

14/11/2020

So summers back in hospital again due to not feeling too good and not eating and drinking again av put an enormous mount of pressure on them to give her a ng tube since last week because as her mum I have seen tge decline in food and water intake and knew what was coming and after 6 attempts on Thursday the nurses give up and now were back in I cant help but feel so annoyed that this could be prevented if they had just didn't give up oh and to top it off she has an infection in her leg from her daily injections on a plus note my car got me here 😀

11/11/2020

So friday we have a zoom call with specialists from Germany London and Manchester aswell as summers from Sheffield to discuss bone marrow biopsy being sent over to Germany to be tested to see if shes eligible for car t cell therapy using a new drug called Tisagenlecleucel to be apart of trial study this will entail summer being in hospital a minimum of ten days but having to stop close to the hospital treating her (not decided which one yet were hoping its Manchester as its the closest one to home) for at least another 28 days we have everything crossed that she doesnt but if she does need this and as a family we have decide if to go ahead as theres lots of potential life changing and life threatening risks that comes with it and that it will go ahead after Xmas so we can at least have Xmas day together as a family so next few weeks are absolutely pivotal to determine the rest of summers journey kicking cancers but I ask everyone to please keep there fingers toes crossed for a mrd negative which means she has indeed kicked its but and we can then continue for next 2 years on just keeping it from coming back

16/10/2020

So summers results are in and shes still mrd positive shes had an improvement in her counts but its those little amounts that are still there shss now been put forward for a new therapy which is called car t cell therapy we will find out in about 5 weeks if shes eligible for it but whatever happens we still have options av been reassured by summers doctor 😪

Summers fight against luekimia