Kyan's Kipling Makeover Mission

Kyan’s Kipling Make Over Mission…….. The Story behind why we are doing this. It’s the summer of 2017; you have a normal, happy life… everyone is well, you have a beautiful child who is enjoying his last summer before starting school...he’s excited about the next part of his journey; enjoying shopping for school shoes, and choosing his new lunch box; he will soon be meeting his new teacher and start to make new friends… Then imagine…..quite literally overnight, without any warning all this is taken away. Your child is rushed to hospital, to find out just days later he has CANCER. Diagnosed with Leukaemia. Your life, your family’s life and most importantly your child’s life is changed forever….and there is absolutely nothing you can do about it. You can’t run away and hide…you can’t fall apart, you have to be strong for your little person. You are suddenly in this whirlwind of a new world. One you know nothing about, and one you hoped and prayed you would never be in… and to be honest, one you had never really ever given much thought too, as your child was healthy and why or how could this possibly ever happen to him or us? Well this is exactly what happened to us..... Our little boy was just 4 years old andsuffering with severe tummy pains so we were advised trip to A &E with suspected appendicitis; to then be told it was more likely to be a virus. We were sent home after one day in hospital awaiting routine blood tests. A few days later we received a call, this call that was to change our lives forever and nothing would ever be the same again. We rushed back to the Children’s Ward at Hastings Conquest hospital and admitted to Kipling ward. That drive was the 40 longest minutes of our lives. When we arrived we were taken into Room 7; whilst waiting for the Doctors to arrive I remember looking around this room…… and thinking oh my goodness this must be serious. We have been told that our son must not leave the room at all; the room was kitted out with everything we would need to survive the apocalypse… It was a plain, frankly depressing room with just a couple of old wall stickers, a fold up camp bed a couple of chairs… but it had a fridge and a TV and a bathroom…. So nothing like I had ever experienced in hospital wards. I wondered how many children and families had stayed in this room before us. Kyan was looked after by some nurses whilst we went for a meeting with the consultants and we were told the devastating news that Kyan had a type of leukaemia called ALL…. Acute Lymbastic Leukaemia. All I can remember saying and thinking was….. He can’t!! You must have it wrong! He’s been fine! And he is about to start school!!! They went on to explain that we would stay room number 7 until the Royal Marsden were ready for us to be transported to The Royal Marsden in Sutton for treatment. We were told that this was us for the next 3 and a half years; the length of the treatment what was this nightmare we were living? Kyan wasn’t much older than the length of the treatment – his short life! We were devastated; we could not believe it. It was explained that we would find out lots more about the treatment once we were at The Royal Marsden, but that the first six months of treatment would take place in the Marsden and then for the remaining 3 years we would be looked after by various teams but that Kipling and room 7 would be our second home whilst Kyan needed care and treatment. We are now into the last year of Kyan’s treatment……. After a tough two and a half years we are nearly at the end of our journey. We are on count down until 19th October when Kyan will take his last Chemo therapy and he will have his final operation to have his line removed. Over the last two and a half years we have had many hospital admissions to Kipling Ward Room 7…. As if you can imagine with a highly suppressed immune system;Kyan becomes susceptible to so many bugs and virus that a normal child would be able to fight them self, but for children like Kyan they simply cannot; a common cold could be a matter of life and death. The second he would spike a temperature it would mean a minimum stay in hospital of three days for us. In 2019 we spent almost the first half of the year in hospital…. Yo-yoing backwards and forwards with one virus after another. Our longest stay was three weeks. When Kyan had pneumonia and then burst a hole in his lung! So now if you can imagine…… Stuck in a room for three weeks with Kyan unable to leave!! And as his parent, only being able to leave to go to the communal ward kitchen… you begin to think about all the things this room number 7 could do with to make the stay here better and more comfortable for the families that are in the same situation as us. The room that has the basics to survive…BUT for a very poorly child that has been ripped from its home and bedroom and all its toys and home comforts it has nothing to help cope with the confinement…Or that potentially could help in the child’s recovery, no visual stimulation, nothing educational for those missing school… Our personal experience of Kipling Ward, the NHS team there including the Nurses and Doctors has been amazing!! They are a dedicated team who cannot do enough for you! They have given us and continue to give us the best care, attention and love…BUT….. They have limited time, money and funds to spend on improving the facilities within the ward!! They do there absolute best with what they have...But ultimately money goes on the care and staffing as you would expect. So… myself and my husband made a decision that we felt we could make a difference!.... There are lots of charities out there that support the families with gifts, days out, holidays, money…. But nothing that actually help the families through the tough times when stuck and isolated from their homes, friends and family! Having to spend long periods of time away from things that just help to make life a bit easier… especially when you’re poorly. Together as a family; and with the support of the team at Kipling Ward we are trying to raise money to purchase items for Room 7 that will help to make it a “ better “ place to be! For all the families in Sussex that have and will need to use it. As a family we realise how much of a difference these things could make. We are compiling a list of the items that are needed, some things are bigger more expensive items and other are little things like a bedside reading lamp! So parents don’t have to sit in the dark in the evenings when you are trying to get your child to sleep... to a new TV as the current one doesn’t work properly! We are also hoping to fund Sensory equipment for much younger children and babies or for children that are simply too poorly to interact with any other activity but to give them some gentle stimulation. So if you feel you could or would like to help that would be truly amazing!!!! Perhaps you own a company that might be able to provide an item because you make or supply them, or simply would like to make a donation. However big or small will all go towards us being able to purchase things from the list! If you know anyone that you think would be able to donate or help, please share this with them! Thank you for taking the time to read Kyan’s Story…… he is not alone in this…. Over 500 children per year are diagnosed with ALL in the UK!! Treatment is advancing and although gruelling the success rate is ever increasing….. We would just like to make your time in hospital as comfortable and as much of a “Home from Home” as possible for our children. Thank you, The Higgs Family February 2020