Ruby's Story

Rubys story…..early July 2022 Ruby developed Bell’s palsy after a visit to gp and ENT this was deemed to have been caused by a viral illness and resolved after 7 days of steroids and anti virals

2 weeks later on the Monday Ruby came home from school not feeling well with a headache and intermittent vomiting, by the Wednesday as she was no better we went to GP.

After a thorough examination she was again deemed to be viral and had some dehydration, however on the Friday ruby was no better so we went to the urgent care centre at local hospital.

Whilst there she nearly passed out twice in waiting room so was referred to PAU for some hydration, after 4 hours Ruby said she felt better and there was no more vomiting so we were discharged with open access over the weekend.

On the Saturday Ruby woke again with a headache and vomiting and I noticed 6 tiny spots around her ankle which weren’t blanching under a glass so I called PAU and was told to take her back.

On returning she was triggered for sepsis and meningitis but when her blood results returned I was told she had leukaemia, the type was unknown but her blood film was being sent to Birmingham Childrens hospital (BCH).

Almost immediately Ruby began to bleed from her nose and gums and her condition deteriorated quickly and at this point her kidneys were in trouble.

Urgent platelet transfusions were needed to which she had a massive allergic reaction to.

Due to her kidneys being in trouble the team catheterised her which caused such distress she haemorrhaged her retinas and the whites of her eyes were filled with blood. After waiting 5 hours for a blue light transfer Ruby arrived at BCH at 5am on the Sunday morning.

All day Sunday she received multiple blood and platelet transfusions (with steroid cover due to reaction) and medication to try and help her kidneys. Monday was filled with multiple team reviews, heart scan, Ct scan, ultrasound liver (as was severely enlarged) but by the evening she was continuing to deteriorate and at 7am on the Tuesday ruby was transferred to ICU for possible intubation and haemofiltration.

Thankfully due to their expertise and a lot of fluid this wasn’t needed but as a result had fluid build up in lungs and around her heart, whilst in ICU ruby recieved her 1st chemo and her type of leukaemia was confirmed ……T-Cell acute lymphoblastic leukaemia.

A week later Ruby was discharged home to start her 2.5 year journey of treatment.
Ruby has faced lots of hurdles during treatment and every side effect possible including muscle weakness in legs causing her to tip toe walk needing to be in a wheelchair at times followed by plaster casts for 6 weeks, splints and other appliances and intense physio. 2 acute admissions for jaundice due to the chemo therapy, a lot of weight gain due to high dose steroids and obviously the loss of her gorgeous hair

Due to being classified as high risk (due to the Bell’s palsy) Ruby’s treatment has been intense from the very start and although now in the maintenance phase this is still full on with oral chemo everyday, an additional oral chemo on a Wednesday plus 4 weekly chemo via her central line and 12 weekly lumbar punctures with 2 chemotherapy’s and 1 steroids injected into her spinal fluid

Through all of this she has maintained her sense of humour and tackled everything head on has only cried twice since diagnosis , the first time being when I told her of her diagnosis when she thought she was dying and when she was in severe back pain from the lumbar punctures being done weekly during the early phases of treatment.

Ruby is currently deemed as being in remission but will continue treatment until Sept 2024 to make sure the leukaemia has gone and allowing her body to produce new/ healthy cells. she returned to school full time in September and once again is tackling everything head on….. to say I’m proud of her is a understatement…… she is amazing and I tell her this everyday !
This is just a snippet of Ruby’s journey and all she has been through

I want to thank The Ben Saunders Foundation for this break as it will allow us to make more memories x