31 August 1996 - 27 April 2002

Jordie’s Story

Jordan was the eldest of our (Jillian and Dylan) four children, Bryn (brother) was two years younger than she, and twin sisters Rhiannon and Corynne 41/2 years younger.

 

When Jordan was 4.5, her pre-school noted that she was stumbling, and seemed to be having difficulty carrying a bucket of sand, as though it was too heavy for her. They mentioned this to us when we collected her that day; a Wednesday. Thursday morning had her at the Medical Centre; she did not see her usual Doctor, as we wanted her seen as a matter of urgency. His response was that this was a reaction to newborn twins (they were 8 weeks old), sent her home with instructions to spend the day with her and we would see the improvement. We weren’t happy with this, but gave him the benefit of the doubt and spent Thursday with her, lavishing all the attention, but at the same time something was niggling at me that there was something wrong.

 

Friday morning, we rang the Doctor, whose opening comment of “So is she better?” didn’t do a lot for us, we informed him that she was no better, and that we wanted to see a paediatrician. He informed us it would take 1 – 6 weeks, we told him that she would be seen that day.  Numerous phone calls followed and eventually, he saw things our way, and by lunch time Jordan was at Kenepuru Hospital, where after an initial examination, it was decided to refer us through to Wellington Children's Hospital, for further examination.

 

These tests showed that Jordan’s reflexes were not what they should be, she had no gagging reflex, and a weakness on her right side.  It was decided that an MRI was required to see what was happening to our little girl.  We were told it could be one of a few things; she could have had a stroke; a bad migraine; or a brain tumour.  Looking back now, we know that they knew what they were looking at, they just needed to confirm it.

 

Saturday morning, Jordan had her MRI, they told us this would take 40 minutes. When she still hadn’t come up to Recovery 2 hours later, Dylan and I both separately and privately thought – they are looking to see if it had spread.  When Jordan eventually did come up to Recovery, it was after over 2 and a half hours in the MRI. She was not happy. She did not like IV lines in her hand, and this would cause some problems later on.

 

By that afternoon, we had heard the worst four words in a parents life “Jordan has a tumour”.  We can’t remember much else, apart from the words “Brainstem Glioma” and then further into the conversation “Cancer”.  For me I can remember looking at the doctor with a quizzical look on my face, saying “My baby has cancer”.  Until that point I hadn’t connected the two words - Tumour and Cancer. 

 

The following days, we met with various specialists – Neurosurgeons, and Oncologists. The news was not good, in fact it was the worst.  Jordan’s cancer was a Pontine Glioma. It was in the middle of her brainstem, they were unable to remove it surgically, even to take a biopsy would cause major damage to her central nervous system causing paralysis.  There was a possibility of radiation and the possibility of Chemotherapy, but there was one certainty.  This cancer would eventually take our precious child away.

 

We left the hospital, armed with books from the Child Cancer Foundation and the Hospital, and a heck of determination to beat this.  We were going to fight. We had relatives searching the internet for latest treatments, whilst also carrying out the programme of treatment that had been decided was the best option for Jordan, which was a 6 week course of Radiation.  We began the rounds of the hospital visits for the fitting of the radiation mask that would used for alignment of the accelerator.  We also undertook time as a family, with trips away, I can remember getting agitated as we would organise something and then the hospital would want us to go in.  I did not want these people in our lives, but we had no option.

 

Jordan started on Dexamethesone, we quickly learnt about the appetite and through trial and error, realised that sugar was a definite no-no, whilst she was on the drug.  If she had sugar, we experienced the most impressive moods swings.  This dosage was slowly reduced, and by the time she had finished radiation, she was off Dexamethesone completely.  I hated that drug – I thought I would never have to deal with it again.  I was wrong.

 

We started with familiarisation trips to the hospital, we did not want any permanent line inserted, we knew that Jordan had the ability to do the treatment without sedation.  We followed the hospital’s initiative on how to handle this, and it was not looking good for when we were to start treatment.  The hospital contacted us and advised that they were putting Jordan’s therapy back a few days, and that they wanted her in the hospital the next day for surgery to put a port in.  We refused, and asked for a week, where we would try our way to get Jordan having the treatment without anaesthetic.  We were down to day six, the last day when she did it – with pre-med, but she did it.  During the next 6 weeks, we only had one hiccup were she did not receive her treatment due to a lack of co-operation.  The hospital also made a video of her as we suggested that this may have helped her, and perhaps may help other children.

 

The last treatment that she had was on the 23rd August 2001.  She wanted to do it her way – with no pre-med.  We achieved what we said she could do.  She did it Jordie's way.

 

The following week, Jordan turned 5 and she started school.  This was something she had wanted to do since she was 4. Nothing was arranged, but Jordan wanted to go and with the schools co-operation she did it,.

 

Christmas 2001 was huge, we celebrated that we were all together, because, none of us wanted to admit it, we knew it would be our last with her.  It was fantastic, Jordan was healthy and more importantly happy.

 

We tried to get on with our lives as normal as possible.   The Make A Wish Foundation granted us a wish of a trip to Surfers Paradise to enable Jordan to visit the theme parks.  This was done at a good time for us. It was in November, and the tumour had not started to impact on her again, so she was able to really participate and enjoy herself, and we got to witness things that families normally take for granted.

 

She began Ballet again, and danced in the end of year recital, again a true blessing for us all.

 

In February 2002, Jordan had an MRI.  We got an initial report a week later from the Oncologist who read the Radiologist report, that it was showing signs of further reduction.  The relief was immeasurable – but short lived.  A couple of weeks later, Jordan started being sick again in the morning, when we rang the hospital, we were told then that the Oncologist had decided to look at the scans, and instead of reduction, he saw progression, but in another direction which was why we had had none of the original symptoms show up. 

 

The visit to the hospital, confirmed what we already knew, the cancer was winning.  We had 3 options,

1.         Full invasive chemotherapy with a small chance that it may give us an extra month or so, but had all the side affects associated with chemo.

2.         Oral chemo – more gentle, less chance of it making an impact,  or

3.         Let nature takes it course.

 

 

We chose oral chemotherapy.  We tried this for 10 days. Jordan hated it.  We went from it being in a large glass of water to more medicine that water, and a large piece of watermelon.  We were also back on Dexamethesone, and all that the drug brings with it.  The appetite, the mood swings, the insomnia.  The insomnia was hard, with 3 other children, so we changed Jordan’s bed for a double, and had Sky Connected to her room, so even if she woke up, one of us could go and still sleep, and she could watch Cartoon Network.

 

In amongst all of this we were offered the chance of another trip to Surfers. Jordan wanted to see where “Tweety Bird” lived again, because she felt so well when she was there last time. Everything was arranged for the end of March.  We went to the hospital on the way to the airport to pick up our weeks supply of Chemotherapy.  Jordan’s deterioration was evident to her Doctor who looked at us, looked at the chemo, and asked what we wanted, Quality or Quantity.           We chose Quality.  We went to Australia without the Chemotherapy.

 

It was a hard trip.  Jordan was losing ground daily.  She walked on the plane in Wellington, when we returned a week later, she had to be carried.  She lost the ability to walk or hold her self up in that week.  She got to see Tweety Bird, and enjoy some of the rides, and for floating in the pools at Wet ‘n’ Wild, and we got to be with her, and her brother.

 

By the time we came home we knew that Jordan would be needing a wheelchair, and other aides around the home.  Jordan fought this strongly, saying that her legs weren’t broken.

 

By this time her speech was also affected, as were her motor skills, she had lost the use of her right hand.  She was having trouble controlling food in her mouth, and choking was now a concern as well.

 

In April we celebrated the twin’s 1st birthday with a family gathering.  Jordan was seated with the other children, enjoying the party food, when we noticed that she was gagging.  Dylan tried to dislodge what turned out to be the top of a cheerio, but without success, a family member who is also a Nurse took over, whilst the ambulance was called.  As we live in a remote area, we drove out to meet the ambulance, which was manned by a solo officer.  He could not remove it either, and a paramedic was on his way.  We drove to meet them as the Ambulance had no tracheotomy kit on board.  Fortunately the Paramedic was able dislodge the sausage, which had been stuck for 20 minutes. Jordan had been unconscious for 15 minutes, and it was another 15 minutes before she woke up.  We almost lost her then.  It caused us to have a look at how we would handle things in future, should surgical intervention be required.  We made the difficult decision to have a  “Do Not Resuscitate” order placed on her medical file. Basically saying no medical intervention for any form of infection.

 

Two weeks later, Jordan decided to get ready to leave us.  By this stage she was sleeping in our room, and I heard her breathing change on Sunday night. By Monday morning, the Dexamethesone Appetite that had ruled our lives for 8 weeks, was gone, Jordan didn’t want food or water, although we were later able to get water to her via a syringe, and we gathered the family around for the final week with her.  We kept her at home, with the support of the hospital. Family and friends came and supported us.  On the Friday evening, the decision was made to put a pain pump in.  Although Jordan’s cancer was not causing her any pain, the shutting down of her body was causing some discomfort and it was easily and well controlled with small doses of morphine.

 

On the Saturday, Jordan slipped into a coma, and at 4pm I picked Jordan into my lap for a cuddle.  Within 10 minutes, her breathing changed.  She stayed in our arms, and at 7.55pm on Saturday 27 April 2002, Jordan slipped painlessly, gracefully and peacefully away from us, surrounded by a world of love.

 

Our time with Jordan didn’t end here.  We had her at home with us for the week leading up to her farewell celebration.  We were all able to have our quiet time with her, to say goodbye in our own individual way and it helped our son come to terms with losing his playmate.  He would get up in the morning, and have breakfast watching TV, sitting on the bed she was lying in.  He would talk to her, stoke her hair, and kiss her. He took pride in showing visitors that she was wearing her party dress and pink boots. Her favourite clothes.

 

Her celebration was just that, we picked things that would mean a lot to her, her casket was lavender coloured and covered with stickers from her sticker collection.  Her butterfly Barbie was in amongst the flowers. Her uncle read her favourite story, and we called all the children in the church to sit around her casket as he read it.  We released 100 purple balloons, and as we carried Jordan from the church, it was filled with bubbles that people were trying desperately to blow from the small bubble bottles that were sitting on the church seats. (It is hard to blow and cry at the same time apparently).  We did it Jordan’s way.

 

 
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