Rather than use words this time, I'm going to share a video montage which sums up Kyah perfectly - always shining.
Thanks for still reading and commenting xo
A confirmed pregnancy brings with it a whole raft of emotions – excitement, anxiety, fear of the unknown, joy and it allows you to dream of the future.
Kyah was no exception. As soon as the test said positive Jason and I were both giddy with excitement but a bit anxious about having another baby and transitioning to three kids.
Eleven weeks into the pregnancy, my brother Dale was in a car accident and spent two weeks in ICU before he passed away. At the time I begged to whoever was listening to my thoughts that I would swap the baby for Dale. He was real and living and I couldn’t imagine my life without him. The baby was just a peanut of a being and the only indication I had that I was pregnant was morning sickness. Besides, I could always have another baby.
No-one listened. Dale died and the little person growing inside me continued to develop.
At 19 weeks, we discovered that our baby was a girl. After two boys I wasn’t sure if I would cope. Us? A daughter? A little girl to dress in pink? It was a little overwhelming and admittedly I didn’t really believe that I was carrying a girl until the day she was born.
Jason and I spent days trying to come up with names for our daughter – what I liked he turned his nose up at and what he liked, I laughed at. We never seemed to agree until he found the name ‘Kya’ on a website. It was African and meant ‘diamond in the sky’. I liked it (but not as much as the name I had chosen) so we decided that it would go on the short list and be the safe name should we still not agree on anything else.
The night before she was born we still couldn’t agree and figured we would know once we saw her.
On the 28th November, 2005 at 2:42pm a new person was brought into the world. The second she was held up, we knew then the name that suited her and we welcomed Kyah Dale Milne into our family.
She was perfect in every sense of the word. We spent six days in hospital and I openly struggled with separation anxiety. I had visions of Kyah being swapped while I was out of the room so spent many hours soaking up her details so that I would know if someone tried to replace her.
It was a very real fear and looking back now I wonder if my subconscious was telling me that something wasn’t right.
Once we came home, the peaceful and serene little girl that we had grown used to disappeared and left a screaming and grumpy child in her place. For eight weeks Jason and I dreaded the witching hour. It started at 5:00 each night and lasted anywhere up until midnight. In that time Kyah would scream and I have fond memories of Jason wearing a path in the lounge carpet from walking back and forwards for hours with a small, red thing that yelled lots in his arms.
During that time, when Kyah was six weeks old, we thought a holiday at the other end of the country would be beneficial to everyone. As we would be staying with family, it was sure to be relaxing and we would have many hands on board to help with a new baby.
Clearly we were still suffering from a lack of sleep combined with nappy brain and what seemed like a fantastic idea at the time soon wore off once we were in Taupo trying to console one very upset baby who screamed everytime we so much as glanced at her carseat. .
Taupo was five hours into the trip – we were still seven hours away from our destination.
The majority of the journey was a blur but I recall arriving, handing her over and then taking comfort in the knowledge that I would catch up on sleep. Kyah had other ideas. We were forced to accept that witching hour had followed us from Wellington and got accustomed to holidaying with a newborn in tow.
And then it occurred to us that we needed to make the trip back home…
Once Kyah was a few months old, she settled into a routine and became an absolute joy to be around. I often found myself staring at her, so happy that my perfect family was now complete.
She became mobile at an early age, learning to crawl at six months and walking by 11 months. Always wanting to be on the go I found it both exhausting and rewarding running around after her. Her personality was much different from the boys. Kaleb and Jordan were cruisy babies, happy to just go with the flow. Kyah, on the other hand, was a bundle of activity from the moment she woke up until the moment she went to bed.
And even daytime sleeps proved interesting when she got to the stage of being able to pull herself up in her cot but not being able to get back down….
I will say that she was an absolute delight to be around and I felt fulfilled spending my days with her.
She quickly became a seasoned shopper and we were often found trawling the racks at Pumpkin Patch. Kyah had an eye for fashion and would happily pick one of everything to take to the counter.
Kyah’s first year flew by. Her birthday came around without any warning and while I looked forward to the future, I recall feeling sad that 12 months had gone so fast. She was the only one out our three children that didn’t have a huge first birthday. I figured there would be plenty more to celebrate…
Her second Christmas was spent in Mount Maunganui with our family. Excitement grew as Kyah knew all about presents and was even happy to check out Santa from a distance. Unfortunately she came down with chickenpox on Christmas Day so for the next week our holiday was all about baths with pinetarsol, calamine lotion and 1am drives to help her sleep
It’s funny to reflect back to that time and remember how we thought that was the most awful thing to happen to us.
Jason and I got married in April ‘07 and for a few months beforehand our lives were consumed with planning our wedding. Kyah was 17 months old and got her first proper cold around the same time. She was our beautiful flowergirl but didn’t get to spend much time with us as she was feeling unwell.
She took some time to get over her cold and once it disappeared I booked her in to get her MMR immunisation.
Kyah had two weeks of being unwell and regular trips to our GP saw her scratching her head trying to come up with a diagnosis.
Little did we know that the suspected pneumonia Kyah was admitted to hospital with was actually a large tumour growing in her tummy and it wasn’t until it had spread through her body that she presented with any symptoms.
Cancer. It was a horrible word. It was only something that happened to old people, not 19 month old babies and most certainly not our 19 month old baby.
She was diagnosed with stage 4 Neuroblastoma and we were suddenly thrust into a world where they spoke in medical jargon and statistics were bandied about, but not in our favour. We went from being a happy family with healthy children to a confused family terrified that we were going to lose our daughter.
Nothing made sense. Treatment was to start immediately but that consisted of lots of drugs that we couldn’t pronounce and didn’t sound particularly nice. We were forced to take a backseat and let the professionals do their job. That was one of the hardest things I’ve ever had to do – hand over the control and watch helplessly not knowing a single thing.
More problems arose and due to Kyah being too high risk in a unit that wasn’t secure we were sent to Christchurch and spent six months there for the majority of Kyah’s treatment. Despite being taken away from our support network, it was a turning point for us and coming back to Wellington was harder than it was to leave. We met many, many wonderful people while living out of Ronald McDonald House and have formed lifelong friendships.
Kyah’s time in hospital was memorable. To read what she went through would have most people’s heads spinning but she handled everything with such grace, it was impossible to feel sorry for her. For someone who had the poorest prognosis to begin with, she showed such determination and we won our very own lottery the day we found out her tumour had shrunk and her bone marrow was clear.
It meant the next phase of treatment would happen.
On the 30th October, Kyah had major abdominal surgery to remove the bulk of her tumour. She was in theatre for eight hours and came out looking completely different from the little girl we had said goodbye to earlier that day. She was swollen, there were tubes everywhere and she was hooked up to so many monitors. We were told that she would be looking at a two to three week stay in hospital but in true Kyah style, she was discharged nine days later.
That was Kyah in a nutshell. The doctors told her one thing and she showed them another.
We prepared for Kyah’s stem cell transplant in late November and it meant she had to spend her 2nd birthday in the ward. Again I didn’t worry because I knew there would be many more birthdays to celebrate once we got through this journey.
As it turned out, her birthday was a huge celebration in every sense of the word and I will never forget the nurses in CHOC singing her Happy Birthday. The walls shook that day – it was one of the most poignant moments to date.
Christmas approached for the third time in her life and as she recovered from her transplant we were desperate for her to get out of the ward. Five weeks later and on Christmas Eve, Kyah was discharged back to Ronald McDonald House.
Christmas had special meaning that year. We finally understood the family aspect and our most favourite present was having our baby wake up with us on Christmas Day.
In January we got the news that we could come back home indefinitely as the Wellington unit was starting to get back on its feet.
Saying goodbye to our friends in Christchurch and leaving the security of CHOC and Ronald McDonald House caused mixed emotions. We were settled but we had to pack up and move again and adapt to familiar, yet strange surroundings.
Life eventually settled back into a sense of normality and we were able to pick up where we left off. Kyah adjusted extremely well and we even moved her back into her bedroom. Having slept side by side for six months, it was more of an adjustment period for me.
Radiotherapy was Kyah’s final major task and she sailed through her 14 treatments with the most minor of side effects.
Relapse was still at the back of our minds but it was getting less scary and it didn’t stop us from living.
Kyah had her hickman line and nasogastric tube removed in June and it was then we dared to dream that the worst was behind us. To have our girl at home with no tubes was fantastic! She could have a bath with lots of bubbles and she could splash as much as she wanted and no-one had to worry about keeping her ‘wiggles’ dry.
I enrolled her back into playgroup and she joined the crèche at my gym and life just eased into a routine.
Kyah had many favourite past times and was famous for being the only one in our family to make the perfect loaf of bread. It may have had a lot to do with her gung ho chucking of the flour, the eating of the milk powder and the spraying of the oil.
Whatever her secret, the loaves she assisted in were always light and fluffy.
She was fairly competent when it came to working the laptop and Xbox (definitely Jason’s daughter!) and worked her way through the Reader Rabbit series with ease.
She was a gifted movie watcher and it was the hours spent in hospital that gave her a true appreciation for Madagascar, Barnyard, Finding Nemo and Nanny McPhee.
She even got to see Kung Fu Panda on the big screen which then saw her trying out her moves to anyone who would show interest. Kung Fu Kyah was born and it was impossible not to laugh as she high kicked her way around the room.
In early August, Kyah started to show signs of illness and for the next six weeks she was in and out of hospital having blood taken, tests done, antibiotics administered and general check ups. No-one could tell us why she wasn’t getting better. The tests that were specific to Neuroblastoma were clear so relapse wasn’t talked about initially.
We flew back to Christchurch for monitoring and on the 16th September a CT scan showed that the disease had come back. Kyah was officially terminal.
Nothing prepared us for it. Our hope was diminished with that one word – relapse.
We made lots of plans in a short amount of time to make Kyah’s final months memorable which included a trip to the Gold Coast to go to the theme parks but sadly, the cancer was too aggressive and she was unable to travel.
A special mention must be made to Giraffe. Giraffe has been around since before Kyah was born. He was waiting for her when she came home from hospital. It took awhile for her to become attached to him but once she did, they were inseparable. Kyah would spend hours twirling his tail between her fingers and it was how she knew whether we had tried to sneak Replacement Giraffe in when she was asleep. His tail was way too fluffy and so in the deepest slumber, she would still know and ask for her Giraffe. During Kyah’s treatment, Giraffe endured every procedure alongside her. He stayed with her during surgery, he offered his tail when the chemo had her constantly vomiting, he was there for every scan and test and he even tried to glow in the dark during her radiotherapy.
Kyah would also use Giraffe’s tail to comfort us when she knew we were sad. To have her rubbing his tail on our arm or face was a privilege and you knew you were part of an elite club if you got to experience it!
Giraffe is more than a soft toy – he was Kyah’s best friend, comforting her during her low points and celebrating with her during her high points. Because of this, it is an absolute must that he accompanies her into the next phase of her journey.
We will miss Giraffe immensely– he had a huge personality for an animal that didn’t say much.
The last 16 months have been the biggest emotional ride any of us have ever experienced. There have been many tears but they have been far outweighed by the smiles and the laughter. We have had the last 16 months with Kyah because there was a team of people dedicated to treating her and supporting her.
The staff in CHOC, the staff on Ward 18 in Wellington and the staff at Ronald McDonald House in Christchurch – each and every one of them played a role that combined, helped us to have quality time with Kyah.
In her final weeks, the community nurses were our saviours. They kept Kyah comfortable, they acted on our concerns and they batted for us when our gut instincts told us to go against procedure.
Ari and Carole – you became much more than Kyah’s carers. You became our friends, our counsellors and most importantly, our sanity. Your impact on our family at the most crucial stage of her treatment has been huge. We would like to thank you both for going above and beyond the call of duty and being there when we needed you.
Black coffee with one sugar, tea with milk and no sugar and plenty of baking will always be available.
And of course, Ari, we are still waiting on you to sing for us…
We will never make sense of Kyah’s cancer and we will never fully grasp why she was taken so early but we do understand the impact that she’s had on a nation and beyond. Kyah has in every sense stopped the world and taught everyone to slow down and appreciate everything positive in their lives. There is so much beauty surrounding us and it’s because of this one small person that we notice and enjoy.
Of course, we would give up her life lessons for another year, another month, another day or even another hour of her laughing and talking, but instead will have to treasure her legacy and know that she has touched the hearts of many.
To Kaleb and Jordan. You have been awesome big brothers to Kyah. Jordan, some days you were the only person that could make her laugh and dad and I loved hearing you both giggle together. It truly was music to our ears. Kaleb, you have been Kyah’s knight in shining armour and her love for you was set in concrete when she was unable to communicate clearly but still asked for you at midnight. Both of you treasure your memories with your baby sister. She will be watching over you and feeling so proud that she got the best big brothers in the whole wide world.
Goodbye and sweet dreams, nice dreams our beautiful butterfly princess. We love you more than the moon and the stars combined. We are honoured to be your family and we will miss you forever.
In addition to Shanell’s entry I too have been having meltdowns. It is bloody hard just sitting around home watching her waste away, watching the meds get doubled then her falling into a drug induced sleep. Carrying her to the bath and looking at her completely limp body is heart wrenching.
One of the last phrases I remember saying to me is " I want you" (which means she wants cuddles), that seemed like a week ago, since then there has been no spoken words.
I sit with her often and read her stories even though she doesn’t respond but then again she doesn’t tell me to stop either. I read her the same stories each time Giraffe's can’t Dance, Hairy Maclery, Brown Bear and Green Eggs and Ham. She used to go to sleep holding these books before the meds were increased. I also talk to her a lot and I am sure I hear a "yeah" but it really is just her breathing.
Yesterday Shanell and the boys put on a Christmas song CD I got teary thinking of what Christmas will be like this year and then went shopping to get out of the house. This must have been when Shanell snuck the breakdown.
We have Ari and Carole back on board this week so it was great to see them and Carole has been on holiday for the last 10 days and I think she was surprised to see Kyah still here.. well so are we. We asked them if they have ever had a case where they have decreased the meds at this late stage and the answer was no. That’s our Kyah one medical mystery always writing her own book and never obeying the rules.
There have been many downs but the ups even though small mean so much. My Dad once again flew down at short notice to help out with the boys due to us thinking it was Kyah’s final hours ... yeah right. He has been instrumental once again in relieving a lot of pressure and keeping us fed and healthy. It was his Birthday on day 500 so we had a party for him even though he cooked but it was the first time I have been around for his birthday in a very long time.
Today Shanell and I went on our first date in a long time. We drove to the supermarket for 15 minutes then back home again lol. Small things mean lots :)
Tomorrow is another day with more challenges and decision making in store Kyah is sleeping peacefully and we both pray for at lets a "go away" or "leaf me alone" from her though would prefer one of our names :)
P.S Thanks to all those that have made donations to our fundraising for the Shave on the 4th Dec and also to those that are fundraising around the t-shirt signing. You are all awesome.