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Bitter Sweet Autumn – Remembering Iris

1
It is September and Childhood Cancer Awareness Month as I write this.

My first child, Iris was born in Spring and died in the third Autumn of her life. She was a healthy newborn.  The early weeks and months went by and I adjusted to life as a new mum, loving my little bundle and obsessing over what milestones she should reach, which baby grow to put her in that morning and finding ways to cope with the tiredness of so little sleep.

I had the same anxieties as other mums have with their babies, but generally I did not have any concerns about her

SelfishMother.com
2
health. However, what I did notice was she was getting more and more fractious and feeding more some days, but I believed these were growth spurts and teething related issues because she was bright and playful and moving towards five months.

My health visitor, who could never have suspected a thing, said she was an active baby as she wriggled and tore up the tissue from the roll on the table. Even the plateau on her growth chart over a few weeks was seen as normal, as it often is. I was told to come back to the health clinic in two weeks.

The next

SelfishMother.com
3
week we went on a camping holiday in Scotland to see my brother and stopped off at my parents in Newcastle. We all got a bug and I don’t think I had been that Ill in a very long time. In fact, looking back I was probably feeling even worse than I should have because I was exhausted; sleep deprivation and the increase demands in feeds from Iris, who I thought had a bug too, as the holiday went on, was taking its toll.

We decided to take her to the doctors on our return and to provide a further red herring, so to speak, my parents were ill too and my

SelfishMother.com
4
mum was feeling really bad. My mum’s description of the illness will usually be ’oh it’s nothing’, so if my mum was feeling it hard, it was a nasty bug.

We got back to our home in West London on a Sunday evening and I was feeding Iris when she was suddenly sick and went limp and cold. Soon after we were in A and E. 48 hours, three hospitals, several scans and emergency procedures later, we were in Kings Hospital pediatric intensive care with Iris who was hanging onto her little life. The line between life and death was fine.
It was discovered she

SelfishMother.com
5
had a tumour on her liver causing her to bleed internally and it was putting pressure on all her other organs as she was going through rounds of crashing and being expertly brought back by the team until they decided to operate.

I remember feeling tuned into another frequency during those days. Underneath the words people spoke in conversations were messages, as though I was processing the information in the only way my brain could through exhaustion, stress and trauma. Those messages told me this was the worst it could get; the next drop would be her

SelfishMother.com
6
death.

That was what the consultants told us directly and there were a million other voices clamouring for me to hear them tell me how severe this was. We, my husband and our families had to get a grip on this idea and hope. The hum and beep of the ward, the wonderful relentlessly friendly, compassionate and skilled nurses, who were a constant, and this constant care reminded me that ’where there is life there’s hope’ rings true.

So they operated and whilst we waited I pictured her in a school uniform ready for her first day. A very normal,

SelfishMother.com
7
universal milestone but something for me to cling too. The phone call came hours later and we could see her. The surgeon removed 75% of her liver and the tumour and she could now have a chance. He told us what he had done in a small room off the ward with his feet up on the table and looking very pleased with himself. He could be pleased with himself, he is a top surgeon and a pioneer In liver surgery.

She was in intensive care for another week. After that it took a week or two for them to find out what cancer it was as it was so rare and it took me a

SelfishMother.com
8
week or two for me to realise that this did not end here.

It was when we ended up in Great Ormond Street on the children’s oncology ward that I really understood. She would have to undergo chemo for at least nine months, which turned out to be just over a year in the end.

So, Iris recovered from the operation amazingly and in her usual happy resilient way. Then the chemo began once her weight had gone up and it seemed so soon to have another op as they put the Hickman line in. A Hickman line is a line that goes into the major artery and is used

SelfishMother.com
9
for getting drugs quickly into her body. It sits in the chest above the heart and the line comes outside of the body. It requires care and we could not get it wet, so no full baths, no swimming and no sandpits. There was also the possibility of the line being infected or ripped out by the child, which does happen.

The first drug through the line was Vincristine. I remember so clearly the name as if it were in neon against a night sky. I believed it to be a potential hero in the fight against cancer. I realised quickly that this would be administered

SelfishMother.com
10
nine times amongst other, soon to be familiar, chemo drugs that would hammer her little body hard so that she would often need blood transfusions to stop her being dangerously anaemic. I would petition for these when I knew her blood was too low as the marked improvement in her health from the transfusions would give her back a quality of life for a bit.

I hated to see her so clearly affected by the anaemia as it would make her tired, unhappy and I am sure her ears would be ringing and I knew that halfway through that bag of blood she would perk up,

SelfishMother.com
11
play better and be much happier.   They rightly gave me reasons why they would not give her a transfusion until her count was exactly at a certain level.

I understood this, but would still petition when we got close to that mark. I find absolutes like that difficult and I don’t like to be told, but I had to be told and I had to deal in absolutes. The administration of drugs is not to be messed with and I got that, I got the science despite not achieving very well in science at school.

I had a total grasp on what was happening to Iris medically

SelfishMother.com
12
and what the prognosis was, and I hoped. Hope is important even when you really know the probable outcome. I had gone online and read up on this rare deadly childhood cancer and how quickly it could return and take hold.

I could also tell by the looks on the faces of the consultants when we spoke to them that her life was saved, but saved for a time and they too hoped they could save it so she could grow up.

I have so much respect for these professionals and the knowledge and experience they have. The conversations they have with families and the

SelfishMother.com
13
hope they hold must be a weight to bear every working day.
So Iris’ life was spent between hospital and home, parks and trees, hospital wards and drip stands. Within a few months of the treatment we were assigned a support worker from The Rainbow Trust, Mary, who was not only a practical support for myself and Adam but an emotional support. Iris loved her and she really was a lady with a wonderful sense of humour and fun alongside compassion, empathy, experience and knowledge of what Iris was going through.

We were not alone, we had Mary from the

SelfishMother.com
14
Rainbow Trust and our family and friends. In that way we were lucky.

Great Ormond Street was as pleasant as it could be. Iris would love it for the first two days and get fussed over by nurses and play therapists and meet other little friends. Older children on the wards are the most generous with their time with babies and toddlers. They take them to their hearts and take opportunities to play with them on the wards. I met some remarkable children who were funny, engaging, interesting and quite rightly sick of being sick.

Iris’ drip would go up

SelfishMother.com
15
and after a while the downward journey into chemo treatment would claim that energy and our jobs as parents was to provide comfort and manage the side effects of the drugs. I would stay in the room with Iris on the ward on a camp bed next to her, I wouldn’t have been anywhere else and she was my only child. How families with other children manage is remarkable.

We would go home, Iris untethered from the drip but remaining knocked out by chemo, still descending for a bit until she would recover and I hit the high of my child feeling better, I would

SelfishMother.com
16
revel in that for a few days, maybe a week. Go to the park, a play date, just out and playing knowing that she is back in for more treatment all too soon.

So that was her life and she got through the treatment protocol for a year and at 18 months we got the all the clear on her scan. No more Chemo, Hickman line out and a normal Life with check ups at Great Ormond Street every two months.

We had fun! Lots! We went to a local playgroup and Iris played with lots of little friends. We had a holiday in Suffolk and went to the beach. She loved nature and

SelfishMother.com
17
spiders and especially worms or mini snakes as she called them. She was fearless in play and had more empathy than I have seen in any child her age. Her concern for other people and her understanding was amazing and at times funny. She told my dad to sit in the chair in her room when he stayed with us and got his hand and made him go so he could have a nap. She had seen he was falling asleep in the front room.

She would shout ’wee’ when we went down hills or ramps in the car and generally used her dad as a climbing frame or trampoline. She chose

SelfishMother.com
18
clothes that were bright and liked spotty prints and would not let me dress her. I worked out I had to give her a controlled choice of clothes. Her favourite was a flared denim skirt.

All this time it was like there was someone standing behind my shoulder whispering the cancer’s name. Then one scan in May it tapped me on the shoulder to make me turn around and face it again. Her scan was not clear. Within two months from her last scan she had a growth the size of a ten pence piece. Her tumour was back and growing rapidly again even after all that

SelfishMother.com
19
chemo and ultimately it was Iris who had to face it. That will never leave me. The fact that I could not take it for her, that it was hers and it was terminal.

She died at home with us on the 18th October 2010.

I read about other children who are going through cancer treatment and other families with stories all too familiar and stories I can relate to.

You see Autumn surprises me. I do know it comes after summer, but the emotional impact of this bitter sweet season hits and hits hard when I least expect it.

I am doing well, Iris’ sisters

SelfishMother.com
20
are thriving and I actually welcome the routine and contact with community autumn brings. This month we have been to the garden centre to buy 100 bulbs of the Iris dwarf variety so that I can plant them in my garden and in the local park and the bit of green on the street in front of the local church.

I like to call it guerilla gardening as it makes it sound exciting and takes the edge off the sadness, but actually it is a way to keep Iris’ memory alive. Bulbs are planted in October when Iris died and they flower in March when she was born. An Iris

SelfishMother.com
21
flower has a short, but beautiful bloom. So every autumn, we do this, since we watched our little funny, smart, glorious child decline and die too soon, too painfully and watched all hope slip away amongst the morphine, the ketamine, the haloperidol and variations of pain relief that we flooded her system with.

This year I eagerly take my eldest daughter, my second daughter to nursery for her first term there and put Thea my youngest and third daughter in the buggy for the walk up to the school nursery and I let Grace go for the morning. I do this

SelfishMother.com
22
with joy and pride as she will thrive there, I know, and it’s a relief. She has made it this far and she and her sister are healthy and happy. That is the sweet.

I look at the fabulous red leaves that fall and show us beauty as they die and think about the bitter, the injustice of the fact that as Iris was learning to put sentences together and tell us about her world, she had to leave us despite how fabulous she was.

She would never go to nursery like her sister, and so begins an existential spiral that I try not to descend down as the nights

SelfishMother.com
23
draw in.

Back to the sweet and my daughters growing up and the earth and planting those bulbs. A lot of love for Iris goes into the soil and cheers us all up in the spring when we see the flowers bloom and remember her.

The Iris flower gives us hope for a good spring and summer with colour, light and growth. She would have liked that.

SelfishMother.com

By

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- 28 Sep 16

It is September and Childhood Cancer Awareness Month as I write this.

My first child, Iris was born in Spring and died in the third Autumn of her life. She was a healthy newborn.  The early weeks and months went by and I adjusted to life as a new mum, loving my little bundle and obsessing over what milestones she should reach, which baby grow to put her in that morning and finding ways to cope with the tiredness of so little sleep.

I had the same anxieties as other mums have with their babies, but generally I did not have any concerns about her health. However, what I did notice was she was getting more and more fractious and feeding more some days, but I believed these were growth spurts and teething related issues because she was bright and playful and moving towards five months.

My health visitor, who could never have suspected a thing, said she was an active baby as she wriggled and tore up the tissue from the roll on the table. Even the plateau on her growth chart over a few weeks was seen as normal, as it often is. I was told to come back to the health clinic in two weeks.

The next week we went on a camping holiday in Scotland to see my brother and stopped off at my parents in Newcastle. We all got a bug and I don’t think I had been that Ill in a very long time. In fact, looking back I was probably feeling even worse than I should have because I was exhausted; sleep deprivation and the increase demands in feeds from Iris, who I thought had a bug too, as the holiday went on, was taking its toll.

We decided to take her to the doctors on our return and to provide a further red herring, so to speak, my parents were ill too and my mum was feeling really bad. My mum’s description of the illness will usually be ‘oh it’s nothing’, so if my mum was feeling it hard, it was a nasty bug.

We got back to our home in West London on a Sunday evening and I was feeding Iris when she was suddenly sick and went limp and cold. Soon after we were in A and E. 48 hours, three hospitals, several scans and emergency procedures later, we were in Kings Hospital pediatric intensive care with Iris who was hanging onto her little life. The line between life and death was fine.
It was discovered she had a tumour on her liver causing her to bleed internally and it was putting pressure on all her other organs as she was going through rounds of crashing and being expertly brought back by the team until they decided to operate.

I remember feeling tuned into another frequency during those days. Underneath the words people spoke in conversations were messages, as though I was processing the information in the only way my brain could through exhaustion, stress and trauma. Those messages told me this was the worst it could get; the next drop would be her death.

That was what the consultants told us directly and there were a million other voices clamouring for me to hear them tell me how severe this was. We, my husband and our families had to get a grip on this idea and hope. The hum and beep of the ward, the wonderful relentlessly friendly, compassionate and skilled nurses, who were a constant, and this constant care reminded me that ‘where there is life there’s hope’ rings true.

So they operated and whilst we waited I pictured her in a school uniform ready for her first day. A very normal, universal milestone but something for me to cling too. The phone call came hours later and we could see her. The surgeon removed 75% of her liver and the tumour and she could now have a chance. He told us what he had done in a small room off the ward with his feet up on the table and looking very pleased with himself. He could be pleased with himself, he is a top surgeon and a pioneer In liver surgery.

She was in intensive care for another week. After that it took a week or two for them to find out what cancer it was as it was so rare and it took me a week or two for me to realise that this did not end here.

It was when we ended up in Great Ormond Street on the children’s oncology ward that I really understood. She would have to undergo chemo for at least nine months, which turned out to be just over a year in the end.

So, Iris recovered from the operation amazingly and in her usual happy resilient way. Then the chemo began once her weight had gone up and it seemed so soon to have another op as they put the Hickman line in. A Hickman line is a line that goes into the major artery and is used for getting drugs quickly into her body. It sits in the chest above the heart and the line comes outside of the body. It requires care and we could not get it wet, so no full baths, no swimming and no sandpits. There was also the possibility of the line being infected or ripped out by the child, which does happen.

The first drug through the line was Vincristine. I remember so clearly the name as if it were in neon against a night sky. I believed it to be a potential hero in the fight against cancer. I realised quickly that this would be administered nine times amongst other, soon to be familiar, chemo drugs that would hammer her little body hard so that she would often need blood transfusions to stop her being dangerously anaemic. I would petition for these when I knew her blood was too low as the marked improvement in her health from the transfusions would give her back a quality of life for a bit.

I hated to see her so clearly affected by the anaemia as it would make her tired, unhappy and I am sure her ears would be ringing and I knew that halfway through that bag of blood she would perk up, play better and be much happier.   They rightly gave me reasons why they would not give her a transfusion until her count was exactly at a certain level.

I understood this, but would still petition when we got close to that mark. I find absolutes like that difficult and I don’t like to be told, but I had to be told and I had to deal in absolutes. The administration of drugs is not to be messed with and I got that, I got the science despite not achieving very well in science at school.

I had a total grasp on what was happening to Iris medically and what the prognosis was, and I hoped. Hope is important even when you really know the probable outcome. I had gone online and read up on this rare deadly childhood cancer and how quickly it could return and take hold.

I could also tell by the looks on the faces of the consultants when we spoke to them that her life was saved, but saved for a time and they too hoped they could save it so she could grow up.

I have so much respect for these professionals and the knowledge and experience they have. The conversations they have with families and the hope they hold must be a weight to bear every working day.
So Iris’ life was spent between hospital and home, parks and trees, hospital wards and drip stands. Within a few months of the treatment we were assigned a support worker from The Rainbow Trust, Mary, who was not only a practical support for myself and Adam but an emotional support. Iris loved her and she really was a lady with a wonderful sense of humour and fun alongside compassion, empathy, experience and knowledge of what Iris was going through.

We were not alone, we had Mary from the Rainbow Trust and our family and friends. In that way we were lucky.

Great Ormond Street was as pleasant as it could be. Iris would love it for the first two days and get fussed over by nurses and play therapists and meet other little friends. Older children on the wards are the most generous with their time with babies and toddlers. They take them to their hearts and take opportunities to play with them on the wards. I met some remarkable children who were funny, engaging, interesting and quite rightly sick of being sick.

Iris’ drip would go up and after a while the downward journey into chemo treatment would claim that energy and our jobs as parents was to provide comfort and manage the side effects of the drugs. I would stay in the room with Iris on the ward on a camp bed next to her, I wouldn’t have been anywhere else and she was my only child. How families with other children manage is remarkable.

We would go home, Iris untethered from the drip but remaining knocked out by chemo, still descending for a bit until she would recover and I hit the high of my child feeling better, I would revel in that for a few days, maybe a week. Go to the park, a play date, just out and playing knowing that she is back in for more treatment all too soon.

So that was her life and she got through the treatment protocol for a year and at 18 months we got the all the clear on her scan. No more Chemo, Hickman line out and a normal Life with check ups at Great Ormond Street every two months.

We had fun! Lots! We went to a local playgroup and Iris played with lots of little friends. We had a holiday in Suffolk and went to the beach. She loved nature and spiders and especially worms or mini snakes as she called them. She was fearless in play and had more empathy than I have seen in any child her age. Her concern for other people and her understanding was amazing and at times funny. She told my dad to sit in the chair in her room when he stayed with us and got his hand and made him go so he could have a nap. She had seen he was falling asleep in the front room.

She would shout ‘wee’ when we went down hills or ramps in the car and generally used her dad as a climbing frame or trampoline. She chose clothes that were bright and liked spotty prints and would not let me dress her. I worked out I had to give her a controlled choice of clothes. Her favourite was a flared denim skirt.

All this time it was like there was someone standing behind my shoulder whispering the cancer’s name. Then one scan in May it tapped me on the shoulder to make me turn around and face it again. Her scan was not clear. Within two months from her last scan she had a growth the size of a ten pence piece. Her tumour was back and growing rapidly again even after all that chemo and ultimately it was Iris who had to face it. That will never leave me. The fact that I could not take it for her, that it was hers and it was terminal.

She died at home with us on the 18th October 2010.

I read about other children who are going through cancer treatment and other families with stories all too familiar and stories I can relate to.

You see Autumn surprises me. I do know it comes after summer, but the emotional impact of this bitter sweet season hits and hits hard when I least expect it.

I am doing well, Iris’ sisters are thriving and I actually welcome the routine and contact with community autumn brings. This month we have been to the garden centre to buy 100 bulbs of the Iris dwarf variety so that I can plant them in my garden and in the local park and the bit of green on the street in front of the local church.

I like to call it guerilla gardening as it makes it sound exciting and takes the edge off the sadness, but actually it is a way to keep Iris’ memory alive. Bulbs are planted in October when Iris died and they flower in March when she was born. An Iris flower has a short, but beautiful bloom. So every autumn, we do this, since we watched our little funny, smart, glorious child decline and die too soon, too painfully and watched all hope slip away amongst the morphine, the ketamine, the haloperidol and variations of pain relief that we flooded her system with.

This year I eagerly take my eldest daughter, my second daughter to nursery for her first term there and put Thea my youngest and third daughter in the buggy for the walk up to the school nursery and I let Grace go for the morning. I do this with joy and pride as she will thrive there, I know, and it’s a relief. She has made it this far and she and her sister are healthy and happy. That is the sweet.

I look at the fabulous red leaves that fall and show us beauty as they die and think about the bitter, the injustice of the fact that as Iris was learning to put sentences together and tell us about her world, she had to leave us despite how fabulous she was.

She would never go to nursery like her sister, and so begins an existential spiral that I try not to descend down as the nights draw in.

Back to the sweet and my daughters growing up and the earth and planting those bulbs. A lot of love for Iris goes into the soil and cheers us all up in the spring when we see the flowers bloom and remember her.

The Iris flower gives us hope for a good spring and summer with colour, light and growth. She would have liked that.

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