31 March 1996 - 22 August 2002
Nahana was born on the 31st of March at 7:35am. The first of our (Tuma & Christine’s) three children. Nahana was followed by Shianne 9/1/99 and Cameron 18/1/2000. Nahana loved his role as big brother and was very protective of Shianne and Cameron. Nahana was full of life, my sister used to call him "The Hundred mile an hour kid", everything was done at speed.
When Nahana turned 5, in 2001, he started at Weedons School. He took to school like a duck in water he loved it and made friends easily. He also played his first season of Cricket; he never missed a practice or a game. At the start of 2002 Nahana moved up a class at school. His behaviour began to change, and not for the better. I thought maybe he was having trouble adjusting to a new teacher. Then at the start of March his teacher said they were worried about Nahana, he was having trouble holding his pencil and his hand writing had deteriorated, there also was an episode of him losing his balance. I took Nahana straight to the doctor, who told me that Nahana was just developmentally slow. I was not impressed. The school disagreed with that strenuously, so back to the doctor we went. She did blood tests that came back normal; she did give me an appointment with a paediatrician. That appointment wasn’t for another two weeks.
In the mean time it was Nahana's 6th Birthday. He wanted a party with his school friends but as Nahana's Birthday fell on Easter Sunday, and it was the start of the school holidays, we decided to take him to Kaikoura to spend his birthday with his cousins. I hadn’t realised just how much Nahana had changed until my brothers wanted to know what was wrong with him. Over the next day or so things got worse, Nahana had a couple of bad falls. On his birthday I took Nahana and his cousins to play Mini Golf. Nahana found this very frustrating as he kept missing the ball. I decided then and there to take him to the doctor in Kaikoura. Nahana was naturally athletic so missing the ball all that time just wasn’t like him.
I got an appointment for 12 o’clock, and it took the doctor 5 minutes to tell me Nahana either had a bleed on his brain or a Brain Tumour. I never once thought it would be something this serious. We drove back to Dad's where everyone was waiting to start Nahana’s Party. We let Nahana have some cake, which he choked on, then we jumped into our car to come home.
The next morning we took Nahana to the hospital where he was given a CAT scan. By lunch time we were told he had a Brain Tumour and they started him on Dexamethesone (Dex). The following day he had an M.R.I., then we were told Nahana had a Pontine Diffuse Glioma, which is a tumour inside the Brain Stem, and there was nothing they could do except offer palliative care.
Nahana was going to die....
The wind was knocked out of us, we were told Nahana only had weeks to live. They offered us radiation treatment to maybe give us more time with him. We jumped at it, we couldn’t just do nothing.
Nahana got to do a few things over the next few weeks like going to see the Crusaders play (Rugby) and meeting his favourite player Reuben Thorne and also meeting the rest of the team. He also got to go in a Police car and have his photo splashed all over the front page of the Christchurch papers. Because of this we were contacted by a man who suggested we send Nahana's medical records over to The Brain Institute in Germany. We had nothing to lose so off they went. For two weeks I lived in the hope that they could do something that couldn’t be done here in New Zealand. That hope was dashed two weeks later when they said there was nothing that could be done for him. My heart was ripped out for the second time in as many weeks. That was the first and last time I allowed myself to hope. Now was just the time to be with our son.
When Nahana's teachers found out that he wanted a party with his school friends they worked a wee bit of magic and arranged one for him at the school with all his friends. His teacher made him a wicked pirate cake and organised party games and food, and the presents were amazing. It was a day Nahana never forgot.
The radiation treatment was hard, and Nahana wasn’t overly thrilled about it. I could handle the yelling, the swearing, and the anger, but not the sobbing, it wrenched at my heart. Thankfully, after a week or so Nahana started to like it. Matt, one of the radiologists, used to call Nahana "Space Man Jimmy". They would pretend that the radiation machine was a space ship. Nahana couldn’t wait to Blast Off.
When his first round of radiation was over we went to Queenstown for a week’s holiday staying at Sunshine Lodge. Nahana went on Jet boats, the Gondola, the Luge, The Earnslaw (an old steam boat), and a whole day spent playing on an Off Road Buggy, which he loved, that was definitely his favourite activity, the smile and the laughter said it all.
The one thing that Nahana had wanted to do since starting School was go on their Flying Fox (he had to wait until he was six) so with the school's help we made it happen. I was so scared that he was going to hurt himself, quite ironic really when the worst had already happened. With one bung arm he was determined, so off he went. He let go too soon though and crashed to the ground. All the kids came running to see if he was alright. After a few tears he informed me he was going to do it again. I wanted to say no and take him home and wrap him in cotton wool. But like a true sadist I let him go again. This time I stood at the end to catch him when he fell, which he did. By now the Dex had turned my son into the Marshmellow Man, he didn’t like it and his friends found it hard to believe it was really him.
The next lot of radiation went smoothly. Nahana didn’t have any side effects apart from a little hair loss, but with the right sort of hair cut nobody noticed. By July Nahana had finished radiation and seemed to be doing well, no more choking episodes, no more falling over, he had even started to write and draw again. It was hard to see him doing those things then, it felt cruel knowing that it was all going to be ripped away from him again.
It was short lived as by the end of July/early August the symptoms had returned, the tumour was growing bigger. Nahana now spent most of his time lying on the couch watching cartoons. Things weren’t too good. My Husband and I decided to get my nephew Stephen to come and stay with us for the week, as he and Nahana were so close and got on so well. It was like a miracle, for the week Stephen was here Nahana got off the couch and played outside with the ball, on the swing and even rode his bike again, something he hadn’t done in a long time. We also managed a couple of outings. Stephen went home at the end of the week, he wasn’t gone long, a week and a half.
On Monday the 19th of August Nahana said he needed to go to the toilet (his bed was now in our room). I told him to go. I heard him fall, then cry out "I can’t walk Mum", and I jumped out of bed. That was the start of us carrying him everywhere. Because he couldn’t walk anymore we asked Nahana if we could put a nappy on him, but he wasn’t having that on, so we carried him to and from the toilet right until the end. He never lost his dignity.
I rang round the family that day, telling them now was the time to come, things were getting worse. Everyone came straight down. By the Tuesday Nahana's speech was all but gone. All his teachers and some of his friends came round that night. Nahana had slept most of the day and we thought he was still sleeping when they arrived. One of the teachers was telling us a story about how two of her 5yr olds that day decided to test the strength of their glue by trying to stick their backsides to the chairs. All of a sudden a chuckle erupted from the couch, Nahana thought this was hilarious, he couldn’t stop laughing, something I know he would have loved being apart of. It was the last time he laughed.
When it was time for everyone to leave they all went over to say goodbye to him. As each of them said goodbye Nahana opened his eyes really wide like he was taking photos with his eyes, in his own way he was saying goodbye.
On Wednesday things got worse. Nahana was sleeping all the time now, it was getting harder to wake him. I had some time alone with Nahana in the morning. I told him that I loved him and that when he was ready it was okay to go. He looked at me and managed a garbled "I love you too Mum". That was the last thing he ever said and the last thing he ever tried to say.
After a very long, and scary, night surrounded by all his family, Nahana Storm Taylor died in my arms at 6:45am on the 22 of August 2002.
We kept Nahana at home until his burial. Nahana was buried in a coffin painted his favourite colour, blue, with a Harry Potter motif on the lid. Nahana's school friends performed a guard of honour outside the church. We let balloons go at the gravesite while our friends performed a Haka for Nahana. He loved watching the All Blacks do the Haka.
My little crusader who should never have gotten his wings so young. Mummy loves you more than words can ever say.
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