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Millie's Story

Millie and her Family visited Ben's Retreat from the 10th December.

"In November 2020, Millie started to get poorly, we were too and from the doctors and medicine after medicine nothing got better. She then got acute chicken pox on top in January and was admitted to russells hall. When we were admitted they told us they thought she had extreme glandular fever and we would probably be going home. One doctor that was covering from the children’s hospital wasn’t happy with that and we stayed over night for more tests. The next morning we were told that her levels weren’t right and they thought it was more serious and we were being blue lighted to birmingham children’s hospital with a possible leukemia diagnosis. Overnight we went from what we though was chickenpox and tonsillitis to now looking at leukemia. We arrived at Birmingham children’s full of nerves but hoping this was all a mistake. We then entered a world we didn’t know existed. We were transferred to ward 18 and from our cubicle the only other patients you could see were what could only be described as “cancer kids”, kids with no hair, pale, dark eyes and visibly poorly. In all honesty, it was petrifying. We began testing, which turned over days that turned into weeks that then turned into months. We went through three different stints on ward 18 and what on that first day was just a scary site through a window became your second family. For Millie especially, belle and Jacob will also be an extended sister and brother to her. We got to March and over that time we were told it was more than likely leukemia but they were certain it wasn’t an acute leukemia but thought it may be in the chronic classification. So, acute means it’s more agressive but it can be cure whereas chronic means it’s always with you, non curable and can sit dormant with flare ups. So we thought ok, this is life changing but we adapt and get used to it. Then the diagnosis came and it was neither, JMML was our diagnosis. Juvenile Myelomonocytic Leukemia. A whole other beast. So rare that it only effects 6 in 10 million kids. This takes over the whole body, aggressively and is hard to cure. The only option she had was to have a stem cell transplant. We tried asking nurses for information and most had never heard of it and the ones that had may have seen one or two other cases, made it hit home just how rare of a case we were dealing with. Our first positive news came not long after when we started testing for Millie’s match for stem cell. Alfie, her brother, was a full 10/10 match which is absolute best case scenario. Except for the facts that both of your kids then involved in this horrible world. Alfie took to it like a champ and told everyone he could how proud he was that he was going to be helping his sister. And so, fast forward to June 2021 following months of blood and platelet infusions, adapting to tube feeds and home medicating to keep her stable. We move into ward 19, the transplant ward. Millie started her chemotherapy to get her ready for her transplant. Alfie later had his operation to harvest his stem cells, like a true hero. She had them transplanted the next day and everyday has been a scary step forward from that point. During this period, Millie has lost her hair, gone pale, had dark eyes, looked ridiculously ill and fully became one of those “cancer kids”. But, she’s still her, she is still out Millie. Her character has never changed and none of these kids do, they’re are an army of resilience and strength. We move forward to september and the amazing happened. 55 days on ward 19 and she’s out, beat all our expectations and doing well, we’re by no means out of the woods yet but she’s on the right path and sprinting. It’s nice to see her get back to some kind of normal. There’s been a lot more ups and downs however, a year an half has past and Millie no longer needs “special sleeps” as the bone marrow aspirations were positive. Now we are on to 4 monthly appointments with her consultants and all that’s needed is bloods. Millies now in full time education and smashing it! We cannot express enough how thankful we are to everyone that’s been apart of this journey for all their ongoing support and help. In particular all staff on ward 19, you are literally saints. The worry never ever leaves you and every cough, cold and spot scares you more than you would realise, however life is for living and we are trying to give our superhero’s the best chance in life and every opportunity we can Thank you for reading Millie’s story and thank you to BSF for this break"

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