Mandys fight #warriorprincess

Hi I am Linda an the extremely proud mum to 4 amazing kids ian mandy Katelyn an Brandon an our lives turned upside down on the 11 of April 2020 in the middle of a covid pandemic an lockdowns when my beautiful daughter mandy got a nose bleeding at home which wouldn't stop so took her to my local hospital to which her nose was packed to try an stop the bleeding an bloods were taken to check everything an her levels as she had huge blood loss then a short while later the paediatric consultant arrived with a very concerned look on his face an told me that mandy had cancer to which I went numb an pulled myself together so fast to not scare mandy it was all I could do in that moment she required 8 bags of blood before it was safe to transfer her from clonmel to Crumlin where the reality an magnitude of everything hit an intense chemo started straight away an theatre where they placed a hickman line in an all while taken in everything mandy was diagnosed with acute lymphoblastic leukemia an started on regime b UK all 2019 protocol which they then discovered it had spread to her csf (spinal fluid) an she was moved to a stronger regime C an then infections mucousitis fluid build up in her lungs to name just a few of the first few months then had 3 tonic colonic seizures to which she was rushed back into hospital an it was touch an go for many hours but the amazing emergency staff saved her life again , mandy has suffered so much in the passed 18months she required a feeding tube as she lost so much weight lowest was 27kg thankfully shes regained alot of weight which has caused problems too but it's there to lose too all while having multiple fractured vertebrae in her back due to an accident in December 2019 an due to the cancer an steroids those fractures spread an remained open cause so much pain an Mobility issues in top of the effects of chemotherapys an steroids plus the mental side of being away from her twin sister Katelyn an her brothers an family we do this alone as covid restrictions have made this so difficult for us all travelling an appointments we do alone we have had some amazing people come in to our lives to lend a shoulder to cry on an support when needed to bringing the biggest smile to mandys face when at times she wants to give up an is upset her childhood is taken away as she can't go an play like the other kids can run play ball or go horse riding which she absolutely loved before all this mandy is the most affectionate little girl you will ever meet an no matter how sick she is she will always smile no matter what she keeps me going an worrys more about me than herself as my own health is not great an I am awaiting major operations myself to improve my own quality of life an also her little brother who is undergo medical investigations currently for seizures among other issues an Katelyn has been the most amazing sister been so independent an strong while I am gone with mandy due to mandys medical needs an Mobility issues which will be ongoing for sometime we have to move house from a two storey to a bungalow where mandy will have her own room rather than sharing a room an with her wheelchair have more freedom than stuck in the sitting room all the time an just that little bit more independence too being a teenager an of course privacy an her own space which she likes at times an also a relaxed area as mandy had autistic spectrum disorder too so it will be amazing for her to have her own quite space hence the reason I am asking for help after 13 years in my 3 bedroom house we are starting over again to a bigger house an we have to furnish it an start over as the kids have bunk beds which means I'll have to get individual beds an bedroom furniture etc an a orthopedic mattress for mandy an god knows what else on top of trips to Dublin an hospital appointments the travelling an getting the kid's back to school we are litterly living week to week at the moment an trying to cover everything on my own is extremely difficult an keep moral up an keep mandy fighting strong to the best of my ability an safe as possible this passed week we have just overcome a battle with shingles which in mandys case could of been deadly but these setbacks happen but they take there toll on the body too which result in a chemo hold to give her little body a chance to recover mandy starts 1st year in September which is a big step in her life that brings its own fears but she will remain in a wheelchair an on Daily chemo marcaptopurine then double doses on a Tuesday an one week a month on shes on dexametasone methotrexate alongside an iv dose of vincristine an then theatre days for chemo into the spine an the worry of losing her hair again in the nexted chapter in her life secondary school it will be different but we have each other an some amazing friends an family that do what they can to help as with mandys bloods being low regularly an the risk of covid we are quite isolated to just us I am open an honest its not easy an the stress of having to move an make ends meet keeps me up at night on top of been a mum to the 4 kids an mandy cancer treatment which is expected to finish in September 2022 please god then we will deal with the aftermath of treatment an long term affects with her bones an her back an building her back up an hopefully by then I too will be over my own major operations an health issues an we can live a normal life again am I can go back to work an be my own independent self an give back to everybody that has helped us up to now an to advocate for children cancer an our story an mandys battles an struggles not knowing what will come next on this road is terrifying an I wouldn't wish it on any parent as its a form of hell on earth an it changes your entire life as you know it an doing it all alone is very hard meeting doctors physiotherapy endocrinologist oncologist haematology orthopaedics speech an language occupational therapist cardiologist to name a few of the absolute incredible team doing everything in there power to save a child's life is not easy alone when it's your child there talking about an that road to Dublin an back is hard an exhausting an dealing with sickness an the nausea from treatment to now moving home I am so grateful for your kindness an help an I thank you from the bottom of my heart as I sit here in tears of what the next week will bring but I am forever grateful for the kindness of each an everyone of you who has helped an continues to help me an my children an the strangers that have become friends an now family thank you