Millie’s Mission against JMML leukaemia

Some of you already know but a lot of you won’t. In November 2020, Millie started to get poorly, we were to 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 Birmingham’s 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 though it may be in the chronic classification. So, acute means it’s more agressive but it can be cured 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 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 is a full 10/10 match which is absolute best case scenario. Except for 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, 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 our 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 yesterday 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 than what we have written here but this will give you all an overview of why we have been so distant over the past year. We have been asked by many people to set this up, which we have really toyed with the idea of. But so many people want to give gifts, create fundraisers and generally follow Millie’s story, we have found this very humbling and did not expect this response at all. Please don’t feel obligated at all. However if you would like to donate, this will be raising money for Millie’s journey going forward. In aid of specialist equipment, services and activities she may need. Long term support and life experiences for her and her brother and family. If you would like to get involved in or organise any fundraising events please let us know, via here, Facebook, Instagram or text. Would be greatly received. 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), Helen Melia, Christopher Melia, Denise Pinfield, David Pinfield, Timothy Kirton, Chelsie Louisa James, Harry Melia, Christie-Anne Stevenson, Dani Parkes, Jake Gaunt, Sam Gaunt, F.P Gaunt & Sons Ltd, Joanne Foxall, Kate Colesy, Tashwar Parker, Marjorie Morgan, Lyn Rowson, Angela Morgan, Birmingham Children's Hospital and Charity, Joanne Burgess, Ann-Marie Thomas-Bartley and Kevin Smith, as-well as grandparents, family and friends.