NEWS & UPDATES

Brave Forfar toddler Kinsley McMillan stole the show at a fundraising event in her name at the weekend. Only weeks ahead of a potentially make-or-break trip to hospital in Edinburgh two-year-old Kinsley was able to join in the fun at  the Music Fun Day at Strathmore Rugby Club grounds. The event raised £3,346 for Team Jak, a Livingston-based charity that provides practical, social and emotional support for the families of children with brain tumours. Last year the family raised £20,000 for the charity and their target this year is £15,000. Kinsley was diagnosed with a rare brain tumour in September 2020, when she was just five months old. Kinsley, is completely blind and has had crucial surgeries and gruelling chemotherapy. She almost died during surgery in January last year. She spent another three months in hospital and the tumour has left Kinsley completely blind. Then, in January this year, she underwent 11 hours of gruelling surgery to remove most of a brain tumour. Risky surgery It was feared the risky surgery itself may have killed Kinsley but her family decided to go ahead with it to give her another chance at life. Without it, doctors said the brave tot may only live for two or three months. Her family knew the operation itself wouldn’t save Kinsley’s life but it’s hoped it will buy her time until more treatments for her condition become available. Later this month Kinsley will travel to the Royal Hospital for Children and Young people in Edinburgh to see if doctors can match her with inhibitor drugs. If a match is found it is hoped that medication can be found that will help stop the growth of the tumour. Kinsley’s gran, Karen Kennedy, said: “There is a chance the tumour could stop growing. “We know it isn’t a big chance but we have to grasp on to what we can. Last chance “This really is the last chance to try to find something that will help Kinsley. “The best possible outcome is that she can live until adulthood but sadly we aren’t overly optimistic about that. “Kinsley’s future is very uncertain but the doctors are trying everything they can to help her live as long as possible.” Karen said that the operation earlier this year left Kinsley without a pituitary gland. Karen said: “This means all hormones have to be given artificially and they need changed all the time –  almost trial and error according to her weight or the stress she is under. “One of the main things affecting Kinsley is her inability to control her body temperature. “This can change in seconds and she gets hypothermia at least two to three times a week. This means the house has to be super-warm and we are all sweating. “The reality is hard but we try to stay as positive as possible.” Karen said: “We are so grateful to everyone who contributed to the fun day. “The depute provost of Angus Council, Craig Fotheringham, came along to open the event. “We want to thank everyone who donated. “Our precious inspiration Kinsley has become loved by everyone who meets her as she fearlessly battles a war all of us can only admire.”    

The funeral of Forfar tot Kinsley McMillan was held on Thursday.

Kinsley with mum Eden Kennedy.

A Forfar toddler with a rare illness has beaten the odds to survive a high-risk operation to prolong her life. Little Kinsley McMillan faced 11 hours of gruelling surgery to remove most of a brain tumour threatening her life. It was feared the surgery itself may have killed the 22-month-old but her family decided to go ahead with it to give Kinsley another chance at life. Without it, doctors said the brave tot may only live for two or three months. The operation itself won’t save Kinsley’s life but it’s hoped it will buy her time until more treatments for her condition become available. Kinsley following the 11 hour operation. Kinsley was diagnosed with a rare brain tumour in September 2020, when she was just five months old. She had the operation at the Royal Hospital for Children and Young People in Edinburgh on Friday and is recovering in ICU. Remarkable progress Her family said Kinsley was “clinging to life” before the operation but only three days later they say it has all gone better so far than they could have hoped for. Her family were so concerned about how the operation would go they had her baptised in hospital the day before. Kinsley was baptised in hospital before surgery. Kinsley’s gran, Karen Kennedy said: “We are absolutely over the moon with how things have gone so far – things are much better than we could ever have dreamed of at this stage. “The neurosurgery team worked for 11 hours and managed to remove 80% of the tumour without any complications on the table. “Kinsley never ceases to surprise us – she has her mobility [and] no signs of any  paralysis so far. Local Matters Become a subscriber and get unlimited access, including premium content. SUBSCRIBE “She’s still very vulnerable but the operation had the best outcome possible. “She has been in the intensive care unit until now but should be getting out of there very soon because she is improving so well. “It has been really emotional and stressful for us all. “Kinsley isn’t just a princess she’s a top fighter – one we are in awe of.” Rare brain tumour Kinsley has already had gruelling surgeries and chemotherapy and almost died during surgery last January. She spent another three months in hospital and the tumour has left Kinsley completely blind. Kinsley was said to be “clinging to life” before surgery The family are continuing with plans for a charity fundraising event in Kinsley’s name, which people can donate to online. Money raised will go to Team Jak Foundation – a Livingston based charity which provides practical, social and emotional support for the families of children with brain tumours. Last year the family raised £14,000 for Tayside Children with Cancer and Leukaemia (TCCL).

Forfar toddler Kinsley McMillan is to be baptised in hospital on Thursday as she “clings on to life” ahead of major 16-hour surgery the following day. Kinsley will travel to the Royal Hospital for Children and Young People in Edinburgh to prepare for her operation on Friday. She was diagnosed with a rare brain tumour in September 2020, when she was just five months old. Kinsley is said to be “clinging to life”. Now 22 months, the Forfar youngster is preparing for the major surgery, which it’s hoped will prolong her life. Without it, doctors say she may only live for two or three months. Surgery She was due to undergo surgery on January 5 but was too poorly for it to go ahead. The operation was postponed until January 21 but her family say Kinsley is currently desperately ill and is fighting for her life. The toddler has already had crucial surgeries and gruelling chemotherapy and last January almost died during surgery. Kinsley will undergo 16 hours of gruelling surgery She spent another three months in hospital and the tumour has left Kinsley completely blind. Ahead of Friday’s surgery Kinsley will be baptised in the hospital at 2pm on Thursday. Fighting for her life Her gran Karen Kennedy said: “Unfortunately the truth isn’t always beautiful but Kinsley is an unbelievable warrior. She is literally fighting for her life. “We are aware of how vulnerable Kinsley is currently and with a delay in the operation every minute of every hour is scary. “Kinsley’s been in pain, losing some ability to function due to the growth of the tumour and the pressures on her brain stem.” Kinsley with her gran Karen Kennedy. She is currently at home in Forfar where she is being monitored and reviewed by her Dundee team of paediatrics staff. Kinsley’s mum Eden, 21, said: “This is to allow Kinsley to stay at home where it is safest and to avoid catching any bugs in hospital. “She wants to live, she’s clinging on and we are desperately waiting for Thursday to arrive. Kinsley with mum Eden. “It is truly the worst seeing a baby in pain and being unable to control it for them. “Friday is the soonest we can get Kinsley’s team together as there will be over 30 medical staff working for up to 16 hours together to coordinate this operation in theatre. “It’s a huge undertaking for the hospital and obviously little Kinsley.” The high-risk operation aims to remove 80% of the tumour, called an optic nerve glioma, from Kinsley’s brain. “I’ve never seen such strength ever in a human being.” Kinsley’s mum Eden ‘Kinsley is the boss!’ Eden added: “On the flip side of the coin she’s still meeting some targets like the ‘terrible twos’, crying when she drops her iPad, and started nipping her big brother. “We are so grateful to witness this and no-one disciplines Kinsley – she’s the boss! “As a family we are living minute to minute right now and we want to let little Kinsley know we are all behind her. “I’ve never seen such strength ever in a human being.” Meantime the family are continuing with plans for a charity fundraising event in Kinsley’s name, which people can donate to online. Last year the family raised £14,000 for Tayside Children with Cancer and Leukaemia (TCCL). Party in the Park with Hats This year they are holding Party in the Park with Hats at Forfar Loch on April 16. Karen said: “We will invite all Kinsley’s followers to join her at Forfar Loch wearing a hat to raise awareness of brain tumours.” Kinsley almost died during surgery last year. Money raised will go to Team Jak Foundation – a Livingston based charity that provides practical, social and emotional support for the families of children with a brain tumour. Karen said the charity was planning to open an Aberdeen base and money would go towards that. She said: “If the worst should happen, this will be Kinsley’s legacy. It would be amazing to think that money raised in her name would go to support other suffering families.” Karen said the day will be family-orientated with lots of children’s activities. There will also be a presence from Team Jak to raise awareness of the project hub in Aberdeen. Various local musicians will be playing over the course of the day with Forfar singer That Girl Gail being the headline act.

https://kissesfromkinsley.com/wp-content/uploads/2021/12/Santa-Visit-Forfar.mp4Santa Claus and a few festive friends helped make some special Christmas memories for a little girl from Angus as she prepares for life-threatening surgery. Kinsley McMillan was diagnosed with a rare brain tumour in September last year, when she was just five months old. Now 21 months, the Forfar youngster is preparing for major surgery in January to prolong her life. Without it, doctors say she may only live for two or three months. Kinsley has already had crucial surgeries and gruelling chemotherapy and in January almost died during surgery. She spent another three months in hospital and the tumour has left Kinsley completely blind. On Monday, the brave youngster was paid a visit by Santa, the Grinch, a snowman and and a couple of elves. Kinsley’s mum Eden, 21, said: “Everyone was so excited about the visit so although Kinsley couldn’t see the special visitors she could pick up on everyone else’s excitement and she knew they were here. “It was amazing that they could visit Kinsley at home. She doesn’t really like going out and being among too many people. “Home is Kinsley’s safe place so it was brilliant Santa and the others visited her here. “This has given us all some lovely Christmas memories.” The visit was arranged by Bobbi Murray, a Forfar woman who follows a blog about Kinsley’s illness, called Kisses from Kinsley. Kinsley’s gran Karen Kennedy said: “For now we want Kinsley to be happy and make as many memories as possible with her. “She has been having music and beauty therapy this month, as well as the visit from  Santa and his helpers. “We are going to treasure every second this Christmas. We are so grateful to Bobbi and her helpers. “Kinsley isn’t really up for going out and about right now, she just wants to cuddle and kiss her family at home where she feels safe.” Mum ‘dreading’ surgery Kinsley and Eden are now preparing for further surgery at the Royal Hospital for Children and Young People in Edinburgh on January 5. The life-threatening operation could last up to 12 hours and aims to remove 80% of the tumour, called an optic nerve glioma, from Kinsley’s brain. Eden admitted she is dreading the surgery but has agreed to go ahead as she knows it’s the only chance to prolong her daughter’s life. She explained that the surgery won’t cure Kinsley but the hope is it will make her live long enough to allow other possible treatments to become available in future. Eden said: “It will be a very risky and a big operation. “I hate that she has to go through this but it really is a last resort for us. “I’m hoping it will buy Kinsley some time for other possible treatments to become available. “Her tumour has become really aggressive and is now growing much quicker than everyone believed it would. We have to do something.” Eden explained recently the tumour’s behaviour has been changing, adding: “This means nothing is working and at the current rate of growth Kinsley maybe has only two or three months left to live. “I’m really scared and I’m not even overly optimistic about how the operation will go. “It’s now either this or she will definitely die sooner rather than later. Right now I’m trying not to thing too much about the operation.” Gran Karen described the situation as a “gun pointed in your back”. “Kinsley’s results from the MRI were the worst they could be,” she said. “We won’t give up hope yet and Eden has made the very difficult decision to have the tumour surgically removed to buy time for Kinsley to find effective treatment for her. “Life at the moment is to keep Kinsley safe, happy and alive to become prepared for this major life-threatening surgery. “This surgery will leave Kinsley with a damaged pituitary gland and other neurological difficulties so making this decision wasn’t easy. “Watching your child suffer is just the worst thing ever and nothing else matters, nothing comes close. “Until your child is medically fragile it’s not something that can be understood. Living with a child with cancer is like having a gun pointed in your back.” What is a glioma? Gliomas are brain tumours which can be extremely difficult to treat because of the way they grow. This is different to other solid tumours and makes surgical removal of the entire tumour almost impossible. Karen said: “Gliomas have a tendril-like appearance which can extend some distance from the main tumour mass into surrounding normal brain tissue. “The aim of cancer surgery normally is to remove the whole tumour  in one piece, with clear margins of healthy tissue around the tumour. “This generally isn’t able to be done with a glioma, where a balance has to be made between tumour removal and risks to cognitive function, or even immediate patient survival. “To remove the entire tumour could involve major and catastrophic damage, so some tumour is inevitably left which can then regrow in the initial tumour site or in other areas of the brain.”