WHERE I HAVE BEEN……..
Mid December my daughter became ill with what we thought was the flu. She missed Christmas completely and a trip to the Doctor the day after Boxing day gave the diagnosis of Tonsillitis. Two days later she was yellow from head to toe. We were rushed straight to our local hospital and then to Sheffield Children’s Hospital. She had multiple organ failure at time of arrival and the Doctor took my husband and I into a room and prepared us for the shock of our lives. Ellie had a super rare disease called HLH (Hemophagocytic Lymphohistiocytosis). So very rare that it affects only one in 1.2 million people. It is also extremely life threatening and if it weren’t for the five highly skilled teams of specialists within the hospital, along with Great Ormond Street, Leeds and Newcastle working around the clock to save her she would not be here. The next few days were a blur of invasive tests, blood transfusions, lumbar puncture, immune cell transplants, scans, x-rays, bone marrow biopsies (on her birthday), and all manner of IV meds in doses I never even knew were possible in one human being. One week morphed into the next and being miles away from home, I began to forget what life outside of the isolation room was like. I didn’t know what to do. There was NOTHING I could do! For the first 10 days I watched her fade away before my eyes. Then, the heavy weekly infusions of chemo family drugs seemed to be slowly working. Her fevers finally stabilised below 40 degrees and her dangerously high/low blood levels began heading in the right direction. They caught it just in time to stop it spreading to her heart and brain. Eventually the feeding tube was removed and the yellowness subsided little by little. After losing 10kgs in weight from her already tiny frame we then began physio to help her to walk again. After over a month in solitary confinement they allowed us home. My gorgeous girl is still seriously ill and the next few weeks are crucial as all her medications are being reduced. It will take a year for her immune system to recover but she is doing AMAZINGLY well. So well she has astounded everyone who has met her, it is literally a miracle she is here today. I did not want to have to type this out because I’m not one for airing my personal life online but my inbox is overflowing with messages asking why my site is closed, where is my Facebook profile, is everything ok? etc. I have had neither the strength or time to read any of those messages so please take this post as the answer. All my time will be focused on getting Ellie well, taking her for her constant monitoring at Sheffield and praying she overcomes this awful disease that none of us had ever even heard of. I will never EVER be able to thank everyone who played a part in saving her life and I hope NOBODY reading this message ever has to face losing their child like this. She is my sidekick, my bestie, my Ellie and I know I could not survive without her.
So I have reopened my website, all areas that are too time consuming to operate just now will be marked as unavailable. Everything else will be running as usual.
Thank you for your patience and I hope you all had a lovely Christmas and New Year.