This is a story about the little girl with a suitcase, mine actually, and our families journey through the first 16 years of her life. It is a story which is ours just like you will have yours, I am writing it to help create awareness and support, not for sympathy or attention, your interpretation will be your own. The name for my photography business "ER Imaging" stands for Emily Rose, the image I have used represents the diagnosis, treatment and long term effects Emily and many other children and their families will carry through their lives, no matter how heavy the suitcase gets many will never be able to put it down. I am not a writer, I am not good at spelling or grammar, however having a deep empathy and respect for others is something I do have. It has taken me twelve years to again use my camera to raise awareness and funds to aid and support ongoing research into child cancer.
During these challenging years our family also endured one of Emily's sisters having open heart surgery and another having to be treated twice for a tumour in her spine over a two year period. For privacy reasons for my children I will not be going into detail about these times except to say I have brave and courageous children who have endured what most adults I hope will never have to see or experience.
So the story begins in the Child Cancer Unit.......
My friend had a beautiful little girl who suffered a great deal but melted all of our hearts. When her hair grew back after her treatment it was in little tight black curls, attending a fancy dress party dressed as a bumble bee, totally looked the part. The day that gorgeous little girl died we were in hospital having a round of Chemo, I took the camera out into the gardens and took a photo of bumble bee.
I made photography cards giving them to the doctors and nurses as we said our own good bye. On my return home nearly two years after Emilys treatment I took up photography , when I look through a lens I see things you miss in everyday life. I started selling and making cards using my photography. I donated all the funds to the then Child Cancer Research Group who were based in a small lab at the hospital. It started off small with the first lot of money donated used for purchasing a fax machine, followed by a fridge. One day I thought why don't I give all the children an opportunity to be famous so I phoned them up and asked them to send me their favourite picture of themselves. Along with a very clever graphic artist we managed to use the images and I created a calendar.With support from many local business and others I directed the project from home and raised $40,000 in six weeks. I went on to produce two more and the funds grew. In total I ended up funding a PHD student for a year. The total amount I raised over three years was $200.000.
The first thing you will notice about anyone telling a story about a traumatic event in their lives is they will be able to recall minute detail even many years after the event, our story started on the morning of Emily's second birthday on the 18th of December 2000.
The lead up to this is supposed to be a bright and happy birthday morning. What started many months before with Emily sleeping and crying a lot, looking back, had been the way for most of her short life to date. I will never forget attending a work Christmas function with family the day before where an old lady came and sat beside me and said "there is something very very wrong with your child", at the time I thought she was a little nuts. Having had three operations myself in the previous three months I had a Drs appointment for the next morning. The girls and I got up and unwrapped Emily's birthday presents but her face had drooped and her health wasn't good. I took her with me to my Drs appointment where he took one look at Emily and said "that child has pressure, you need to get her to hospital straight away"! Looking back I didn't ask where is the pressure or any questions at all, must have been a gut feeling about something though as I had already begun to organise things in my mind. How the hell was I going to do manage a sick child with three other small children, a husband who worked away for his job and whilst living in an isolated West Coast town, it felt like a million miles from anywhere. The word nuts is used again here as when I turned up to drop off the other children at a relatives place to make the journey to Nelson hospital alone with Emily thats exactly what I was told I was "nuts". Granted nearly having 4 under 5 and bringing them up alone and a history of post natal depression they were probably not far wrong.
So ....Nelson Hospital, Emily slept all the way there and was now virtually sleeping all the time. Again I arrived and had no idea what we were doing there, nobody said much at all so I had no indication of what was to come. It was a good couple of hours before a Dr came in to the room. He sat down and said to me "well I have to be honest this thing stinks like a cart load of dead fish"... nutty people everywhere! I actually still had no idea what the hell was going on. Finally he said to me "we think your child has a Brain Tumour", well that did it, there was not one cell in my body that believed this man, they hadn't even done any tests! When he left I curled up at the end of Emily's bed and we watched Jungle Boy, I remember thinking I don't even have a balloon for her birthday and she might not ever have another one .
The next morning after a CT scan it confirmed Emily had a brain Tumour and a very large one. Emily and I were put onto the Air Ambulance to Christchurch Hospital. I remember when the plane took off and we reached the clouds I thought I was taking her to heaven.
We returned home once during the next 18 months.
On arrival we were met by the Ambulance at the airport and transferred to the Christchurch Hospital Emergency Department, it seemed like we sat for sometime alone. Eventually a man in leather jacket and briefcase came and guided us up to the children's ward. Emily still sound asleep in my now dead heart and arms. It wasn't until the point when he slapped up the X-ray on the window and said wow this is huge seeming quite excited that I realised he was in fact the Brain Surgeon. At this point I will also tell you that was the first time I realised that she may not be going to die, that the had a chance and they could operate.
First time in the treatment room and the the first of thousands of scars for Emily and the first of thousands of scars for me and my family. Two years old and 9 kilos. First time being held down, first time getting a needle put in, the first of hundreds of times of firsts.
Eight and a half Centermetres wrapped around both main arteries . Five hours duration and a surgeon I then named God.... The risk of Emily coming out of the operation with brain damage or nerve damage was extremely high and only time would tell.
When we got her back she had part of her beautiful blond hair shaved and a shunt drain from her brain. The first big drug I had to try to say was Dexamethasone (probably spelt it wrong) it took me a lot of getting my tongue around that at three in the morning lying next to her.
I should have know then what an incredible child Emily was as the way she recuperated was nothing short of incredible. Her spirit was so incredibly strong even the nurses were scared of her! Christmas day was spent taking half an hour to walk a few hundred steps carrying her asleep to the hospital cafe with my family to try and have Christmas lunch, we were there five minutes and we took her back to her bed. We still don't really do Christmas!
When the biopsy confirmed Emily had a Malignant Epedemomya Brain Tumour we got to go home a few weeks later for a few days to pack up our house, then life changed forever.
Chemotherapy consisted of 56 rounds of five different Chemotherapy drugs some given at adult strength along with 6 weeks of Radiotherapy to her brain where she had to be put to sleep on my lap at 7.30am every morning. In short what was meant to take 12 months.
It took 18 months to get through this protocol which we did not finish as Emily's body could not take the full course. I will not go into medical detail as most people know that it is a horrific experience having treatment for cancer, more so on a child's little body. The things that happened were endless rounds of chemo, blood transfusions, operations and procedures clocking up over 200 nights in hospital and a lot of time in theatre . Here however are some stand out moments that I will share, not to shock or as I said to get sympathy but to help people to understand why so many people when going through something like this change. The things that happen not only to you but especially when it is your child and it is out of your control can impact how you are and how you react to things as a person for the rest of your life, these are some of those moments for me.
While waiting in the recovery room for Emily to come out of her Brain operation a lady was sitting there sobbing, I gently asked her what was wrong? She explained that her son had chopped off a bit of his finger and she was very upset he may loose the top of it. I listened and she stopped crying and asked me who I was waiting for, I told her that my daughter was having an operation for a Brain Tumour. She looked at me and started to apologise as her worries seemed nothing......here is the lesson, what she was feeling for her son was no different to what I was feeling for my daughter, we were two mums sitting in recovery waiting for our children, we were scared and hurting and feeling the same, it didn't matter who seemed worse off, it was a moment which was very levelling. I never ever compare.
A few months into treatment Emily was sleeping 24 hrs a day virtually, the cause for this was found after a visit from the outreach nurse (another angel) and an emergency trip for an MRI scan. It showed swelling in the brain, operation was scheduled and medical staff debated, but eventually a Brain Shunt was put in. This is there for life. The next day the stitches burst an I had to sit with Emily on my knee for four hours while brain fluid leaked into a bandage. When she was stable and ready they went back to re stitch her up. The shunt has been a bit of a curse during the years as the pressure changes causing headaches and other issues. It is a shunt that you cannot alter so it is free draining fluid from the brain through a tube which is feed into the stomach. This is good when you need to drain but causes dehydration when you don't. They say its like living with a permanent hang over.
Chemotherapy was administered through a Portacath which is a device surgically put under the skin giving long term access for needle for the drugs to be administered to the vein. Emily had three of these during her treatment. I lifted up her t shirt one morning to see that the metal device was hanging out and her skin had disintegrated so that was not a pleasant time.
One thing that perhaps is a little funny was the girls and I went to the Arts Centre just down the road from the hospital for lunch one day as a treat. Emily at that stage was a month or six weeks into her treatment. We grabbed a table in a very busy part and sat down, I removed her hat only to see I had also pulled out most of her hair, I sat in the middle of the restaurant with us all Blubbing...funny now as I can still see the embarrassment of all those around us, there were many moments like that during the years, if only I knew then how incredibly silly it was to worry about her hair, it was the last of the worries compared to what was to come.
I lost count of the amount of feeding tubes she had to have and all the other things that went on, so much was happening and the lack of sleep was so intense I don't even remember a lot of what did go on. I can tell you that the nurses are the most incredible people in the world and if it wasn't for them I would not have made it, neither would my children. The Drs I feel we owe a great deal as they treated us with such respect and always allowed me the knowledge I craved, it was funny I could deal with things on paper so I could talk about it all and it made sense as long as it was written down but harder translated into the actual physical act. The Brain Surgeon used to write and draw diagrams on the sheets for me!!
Radiotherapy was partically challenging as we had had such a long time in treatment and her wee body was getting very tired. The Drs put her to sleep every morning in a little room just off were all the adults were coming in and out for their treatment, we broke a lot of hearts as she would wear dress ups each day and one morning she was dressed as a bride, it was again a moment as I think in so many of our minds was will she live long enough to get married. Another moment during radiotherapy was one morning I was so tired I decided to hand her over and stay in the little room and wait, I was even more tired when they came back, actually I was on the floor, they had left the scavenging machine on....free sleep...free drugs, just what the Dr ordered! Every morning we had to sit for a while with her until she woke up and they knew she was ok, I can never look at a jelly bean ever again, I had them in my hand and she would (with eyes tight shut still) move them around and then peek a little to pick out the black one to give to me before she had the others. That was the cue for the team to carry on with the next patient.
I have to mention the other families as they were an enormous part of not only our journey but our lives. They all changed mine forever. It was not all bad we all had a hell of a lot of fun at times and drank a lot of wine up and down the hallways. Black humour is something you develop for survival.
This is a heartbreaker.
Imagine your kindy group, you arrive each day and greet the mums, play with the children, your friends children become your children's friend. You all have sleep overs and days at the beach or the movies or whatever, then imagine that each month one by one the class got smaller and smaller and the children were taken away. That is what happened to us. A lot of my friends lost their children to Cancer in fact I have fifteen beautiful little faces here with me as I write. I am still to this day heartbroken for the families I got to meet and the children who didn't get to live. I know many will think get over it, it was years ago, get on with life....move on, stop living in the past. Here is where it all pulls together you see we have not been able to forget nor would I want to because it wasn't all bad and we learnt a lot and met a lot of incredible people. We have all got on with life, very much so. If it is one thing that this journey teaches you, is the you have to try to make the most of the presious life you are given. You need to try and live it because when you have seen as many beautiful little children in coffins as I have you know they didn't get the chance so you owe it to them to make your life the very best that you can. I have very little tolarance to trivia now and tend to try and look on the bright side. I also try hard not to get bogged down with all this little petty stuff so many get consumed with, I too have been sucked into this often during my life. Being exposed to the things I have I now view people and things exactly as they are, so not always political correct in other words!
I knew what loosing a child was like for my friends and their siblings after loosing my own brother and watching what it did to my parents. This also set me on a life long battle with re active depression and later on with post natal depression which didn't exactly give me the right tools in the toolbox to have to deal with years of stress which was to follow.
I as a mother have not been able to "get over it", because for the past 16 years there has hardly been a month go by where we have to re live it due to Emily's health. There are always Drs appointments in the diary so how on earth can you forget and get on with it when it is still a part of your everyday. It has been a very isolating and lonely journey. On one hand I have my beautiful friends that lost their children but didn't want to talk to them about how challenging it is or has been to be finding a diagnosis or treatment for Emily's Late effects because they would give anything to be in our shoes. I have my other friends who as wonderful and loving as they all are unless you go through this could never be able or expected to understand.
The most misunderstood thing about Childhood Cancer is that yes thankfully the survival rate it much higher now, that is wonderful and may we continue forward, that is after all what I am fundraising for! However the cost of this survival are the late effects that we still don't know a lot about. Emily had everything thrown at her, the Brain Tumour, the major operation inserting the Brain Shunt, all the other operations, multiple Chemotherapy drugs, some of the most severe kinds and Radiotherapy. All this to an undeveloped two year old brain. The side effects are and have been growing since Emily had her treatment. It was not a case of oh well we have saved her, fixed her, off you go now and enjoy life and just forget about it. This is the perception of most people due to the lack of knowledge and education around Late Effects for some kinds of Cancer treatments not just for Emily also for many others. The late effects vary form patient to patient of course depending on diagnosis and treatment and lot of other factors. Because Late effects are not recognised by many official agencies or departments as any kind of condition or handicap you don't fit into anyones box for support. As time has gone on and survival rates have increased Late Effects teams have been established to support patients and families, nothing I can say would speak highly enough of them.
Many childrens side effects are severe but unseen to many. The same little girl at two years old that the nurses where a little wary of has managed to fool the best with the most gorgeous smile and big unselfish heart. I have hardly ever seen her cry especially not for herself. She covers up how she is physically feeling to desperately try to fit in and conform to what life demands. The fact is she sleeps 80% of the week due to chronic fatigue, she has massive headaches a lot of the time, in fact most days. She has a lot of muscle pain and skelatal issues. She has very poor short term memory, her hearing is damaged and she has problems with her eyes. Her teeth, growth and roots have been effected, the list goes on and some of it personal so I won't elaborate but you get the picture. With all this going on growing up has been a privilege a gift and a challenge, all which I think has been incredible, she has embraced and tried and in most cases achieved. She may not be the captain of the Netball team, she may not be the head of the Debating team or the Head girl or the top sports person. The schools system has tried to be supportive especially some wonderful individuals but the system and over all understanding of children trying to cope with Late Effects is very poor. Its amazing when you have a cute little girl with a tube and no hair how it effects people, but when the hair grows back and the tubes are out and the scars are covered its difficult to get the right kind of support and understanding. It is especially difficult as a teenager when you just don't quite cut the mustard, it can be a very isolating time for any young person dealing with any kind of chronic ongoing lifelong illness or any other condition for that matter. Friends are one of the most important tool you have when you are dealing with the tough stuff.
In a few weeks time Emily will turn eighteen years old, she is about to graduate from high school, she has her license, she is an absolutely outstanding beautiful human being. She is different and unique and incredibly special, she is tough and strong and very very determined. She is living with a huge spirit and is using the gift of life she has been given to the fullest. I wish her nothing but happiness and from now on a life without pain and suffering would be all I could hope for, I hope she will get the break in life she so deserves. I hope she can fill "the suitcase" with clothes and travel the world just like she dreams of doing. This year Emily went on a Social Justice School trip with Break Free Expeditions to Vietnam and Cambodia, to see her in 40 degree heat trying to help others was again testament to her character.
There are many many people much worse off, we have seen this both here in New Zealand and over seas, I understand and appreciate this, I always have, but as I said this is our story and I want to share it because I need to write for my own healing and for the other families and most of all for Emily.
The Children Cancer Research Trust and how to help, continuing from the beginning my focus now is continuing support for research and I want and need your help!
I gave up fundraising last time because we lost a lot of the children featured in the calendars I produced, and my own children needed me. I also questioned myself weather it had been he right thing to do. I am now ready after twelve years to kick this off again, not with a calendar but using Photography and maybe some other project ideas I have.
If you wish to make a donation or wish to support me by using my photography then please do contact me.
Thank you to the incredible people in the medical teams who continue to put your skills and heart and souls into caring for our children.
The last notes go to my friends who have shared the journey along our way and to my beautiful family, but this is especially in memory of my Dad who has just passed away with Cancer, he always said that Emily was his inspiration, they are both mine.