This Mama Knew Something Wasn’t Right
Where do I begin? Our baby, Sienna-Rose has always been so unsteady with her balance.. we thought nothing of it at first. We assumed it was down to being short sighted and having a double squint! She was still hitting all of her milestones on time. Nothing to worry about right?
Wrong.. fast forward to January the 30th 2019. Sienna has her injection and we were pre warned there would be a fever. She had the fever.. followed by sickness, unsteadyness, lethargy and a high temperature. We firstly rang our GP who recommended calpol and lots of rest. The sickness still came. After a few weeks of constant sickness and crying we took things further. We took her to A&E who did their checks and diagnosed “gastritis” she was prescribed a course of amoxicillin which she did dont take down neither did it fix the sickness.
We returned to our childrens walk in centre only to be told the same thing.. “gastritis” again she was prescribed a stronger form of antibiotics only for her not to take down again.. then the motor neuron issues took place. Sienna was showing clear signs of balance issues and could no longer walk/crawl/sit upright. She was very lethargic and hot. We went to A&E for the third time just to be told her immune system was weak and that some babies take longer to recover than others.
Weeks went by while she rapidly reclined. She was soon stuck in a corner of the sofa watching TV and sleeping all day. We tried to contact our health visitor but she left the service and forgot to transfer her notes over to the new health visitor who didnt know she existed. I came to the end of my tether and broke down to the lady in the weigh in clinic who took my concerns seriously. She refered her to paediatrics but we wasnt going to be seen until June.
Good news – They’ve gotten rid of 95% of the tumour.
Bad news – Its defiently a stage 4 aggressive medulloblastoma. The 5% that remains is attached to a membrain that the surgeon didnt want to remove as it would effect her brain development. In two weeks time she will have chemotherapy.
We expected this outcome.
Still doesn’t stop the pain, anger and emotion. I know she is a strong ass girl who will kick cancers ass!
– Tilting of the head
– Growth of the head
– Vomiting and nausea
– Lack of interest in food
– Poor movement
– Behaviour changes
– Unable to hold balance/Regression in milestones!Even if you think it’s not.. request to be seen my a neurologist to rule out a tumour! Earlier detection means better treatment and a higher survival rate! Trust your gut instincts and if you feel something is wrong, please fight until you find out what is!
