Kelleigh Burkett

UPDATE FROM KELLEIGH: This might seem long but lots to say lol hope you are having a fab Easter. We are resting and enjoying home time. xxxxx Well this has been the most difficult, challenging and frustrating 8 weeks for our family. I have had 2 treatments fail within that time, radiation on my Brain that has left me with terrible short term memory loss and I am being weaned off the steroids due to brain swelling but this is leaving me fatigued, head-achy and unable to sleep all night. I am thankful that I'm still here but one of the hardest things I am dealing with is loosing my independence, not being able to drive and the fatigue. My family is my world and I will do anything to protect my girls. Its been a challenge to give age appropriate information to them. We live day by day just like the kids do and try not to think about the future. We create memories everyday, laugh, love and enjoy the small things like the rain on my face and the wind in my hair, which is starting to grow believe it or not. As you are all aware, Craig and I flew to Sydney for our appointment with Dr Friedlader who was a very kind, caring and gentle soul and we are greatful that he could see us. We had some good and not so good news. I am unable to get on the PARP inhibitor trial due to the current Chemo drug that I am taking. It basically excludes me from the clinical trial completely. But, the good news is that there are drugs in Australia that we can pay for that are not available in New Zealand. There is a drug that can help make Hormone treatment more effective which will cost $50,000 for a year, plus I will need to fly to Sydney every month to have it. As a family we don't take this lightly, the outcome will be the same but this may just give me more time with my girls and i do believe I could be the one of the 5% of people that defy the odds. There are also other Chemo options that we can look at down the track but unsure of the cost of these at this stage as we are still waiting for the report to come through. I am due for a CT scan in May and this will determine the next line of treatment. I am hoping that the current Chemo pills I'm on are holding things stable, but am fully aware it may not be working. As the Professor said, there is no cure but we have some options to give you more time if they work. I will be attending the Ian Gawler retreat in Auckland in mid May for a week which I'm really looking forward to, it's for people living with terminal cancer. The below is an overview of the course copied from the program. ""This program will provide a gentle blend of theory and experience. A wide range of choices will be presented for you and their relative merits for healing and wellbeing discussed. The emphasis will be on what has been found to work in practice, what the research says, and you will be assisted to decide what is best for your particular situation. The program is evidence based and highly experiential, so you will have the opportunity to learn as well as to experience the food, practice the meditation and to be in a supportive, positive atmosphere. The aim is that you will go home from the program having experienced the possibilities and that you will be clear about your choices, confident regarding what will help you most directly, and ready to apply it all in daily life. What we are talking of is not gAlternative Medicineh, nor even gComplementary Medicineh as such, although all of this is designed to complement any other treatments you may be having. No, this is Lifestyle Medicine and it is to do with the therapeutic impacts of what we eat and drink, our levels of exercise, our relationships, the state of our mind and our capacity to mobilise the power of our mind using techniques such as positive thinking, relaxation, mindfulness, creative imagery and meditation. You will learn more about the role Lifestyle Medicine plays in overcoming the many challenges of cancer; including the science relating to the therapeutic benefits of nutrition, positive states of mind, mindfulness and meditation. There will be good time for questions and discussion. Regular relaxation, mindfulness, meditation and guided imagery practice sessions will be a feature. The pace of the program has been designed to be restful and regenerative, amidst a valuable learning experience."" From Ian Gawler. The incredible fundraising events that have been held and are going to be held have blown us away. It was really hard to get our heads around accepting money, but we are so grateful - from the bottom of our hearts - for everything. We Are all so grateful for the photo sessions, rides, lawn mowing, gardening, help from friends, and delivered meals that keep things going. I couldnft do it without the friends that have the kids for play dates, take me to doctorsf appointments and those who offer assorted favours. I need you more than you know and am grateful to those who offer. Life is short, break the rules. Forgive quickly, kiss slowly. Love truly. Laugh uncontrollably and never regret anything that makes you smile. Mark Twain Love Kelleigh x