Child Cancer Awareness Month 2016

Child Cancer Awareness Month 2016

Be Aware

I have been acutely aware since waking up this morning that today is the 1st of September – the start of Childhood Cancer Awareness Month. I wish that I wasn’t Child Cancer Aware – not to the extent that I am now anyway. I wish that I could just roll back my life to a time four years ago when (despite my nursing qualifications) my knowledge of childhood cancer was almost non existent. Yes of course it’s important to be Childhood Cancer Aware but I wish that this was mere ‘head knowledge’ and not ‘heart knowledge’.

My ‘awareness’ of childhood cancer causes me to feel deep sadness and fight back tears every. single. day. The least wee thing can trigger this – a product display in the grocery store, a casual comment from a friend or work colleague, a memory that suddenly pops into my head.

This time three years ago Leah and I were in Bristol Children’s Hospital. The previous week Leah had been transferred out of her isolation cubicle on the Bone Marrow Transplant Unit to a beautiful ensuite room on their amazing purpose built Adolescent Unit. We had also been told the most fantastic news ever, which was that Leah’s bone marrow transplant had been successful and that she was fully engrafted. We were ecstatic. It was now going to be onwards and upwards, or so we thought.

Leah was allowed off the ward for short periods of time, so on the 2nd of September we very cheekily had a sneaky trip to the local Costa – this was strictly forbidden as Leah’s immune system was still very fragile.

Leah at Costa

Sadly our euphoria was short lived, as over the following weeks and months, side effect after side effect from the harsh treatments that she had experienced began to ravage Leah’s body, until finally – five months post transplant – these side effects also claimed her life. The cure proved as destructive as the disease.

Devastatingly, this is the reality of childhood cancer.

 

Missing Kylie by Mark Myers ~ a book review

Missing Kylie by Mark Myers ~ a book review

Those who know me well will know that I love reading and tend to buy more books than I have time to read. On the 7th April 2016 Mark Myers published his account of a two year journey ‘through the wilderness of no‘.

On the 9th April 2014, the youngest of Mark’s daughters, Kylie, aged 12, was diagnosed with Ewing’s Sarcoma. She had always been known as Smiley Kylie. Kylie fought her illness bravely for ten months. On February 13th, 2015, Kylie’s battered body succumbed to the disease. She left her family with two missions; take care of her kitten and kill childhood cancer so that no other child has to die.

Our daughter was also a cat lover, but sadly her beloved cat Charlie died on the road while Leah was having her treatment at Bristol Children’s Hospital. Apparently Charlie missed Leah terribly while she was in hospital, as he was so used to receiving lots of cuddles from her.

Leah and Charlie 3 edited

Mark’s blog came to my attention just before Easter this year when I read his blog post The Empty Grave Conundrum. I wept profusely as I read, identifying with almost every word.

I tried to resist the temptation to buy his book Missing Kylie: A Father’s Search for Meaning in Tragedy as soon as it was released, as I have so many unread books adorning my shelves. I succumbed on the 12th April and I read it over two days.

Missing Kylie

This is one father’s account of  his two year journey from the day that Kylie received her diagnosis up to the first anniversary of her death. Kylie’s response to her diagnosis was similar to Leah’s; Kylie said “God must have a really big, great plan for me.” Leah lived nine months from her diagnosis, ‘Smiley Kylie’ lived ten months. Just like Leah, the primary cause of death cited on Kylie’s death certificate is respiratory failure.

Mark has three main aims with his book:

1) To share the story of his beautiful brave daughter Smiley Kylie with a wider audience.

2) To share his ‘messy faith’ with hurting people in a genuine and authentic manner.

3) To raise money and awareness for safer and more effective treatments for childhood cancer.

Mark achieves all these aims and more besides. This is a very readable book that I could not put down. I read it over two days. Mark is honest and genuine without giving unnecessary medical details that could make it difficult reading for those who are a bit squeamish. The love within this family of six is so evident.

I especially loved reading the letters that each family member wrote to Kylie on the first anniversary of her death. Mark concludes the book with three short chapters that contain guidelines for how to support a family who are dealing with a difficult diagnosis or life-threatening illness. One of these is entitled ‘What to say when there is nothing to say.’

I highly recommend this book.

Breaking Bad News

Breaking Bad News

As most of you already know, Leah’s first blood test was on her fifteenth birthday – New Year’s Eve 2012. She died 16th January 2014. Her illness spanned one year and sixteen days.

In effect, this means that every month contains some kind of ‘anniversary’ – these ‘hidden anniversaries’ vary in terms of painful intensity. I try hard not to dwell constantly on the past or ‘wallow’ in negativity, but some dates and events are so traumatic that they are very deeply etched into my brain.

Sadly, today is one of those dates, one of the many days that I wish I could erase from my personal history because it continues to feel so very painful. Three years ago today I answered a ‘withheld call’ and grappled to process the very unwelcome information that the stranger at the other end spewed in my ear. While I was conversing with this doctor, Leah, quiet and dignified, sat beside me and did an internet search of ‘myelodysplasia’ and ‘bone marrow transplant’ on her smartphone.

I did an internet search today to see what kind of information Leah might have been confronted with that day as she ‘googled’ while the doctor and I talked. The first article that came up was this one that states ‘Myelodysplasia syndrome is rare in childhood, and most children have a rapidly progressive course.’ The second one states that: ‘The disease is most common in adults, especially elderly people, and the course varies, ranging from an acute, rapidly fatal illness to a chronic, indolent illness.’ and ‘Infection, rather than progression to AML, ultimately results in the demise of most patients with MDS.‘ I had to stop there as I could no longer see through my tears.

Six days later, on Thursday 25th April 2013, Leah participated enthusiastically in her annual Girl’s Brigade display, just like she had done every year since she was three years old.

Climbing wall
Saturday 27th April 2013, undeterred by her recent diagnosis, Leah had an amazing time away for the weekend with her Girl’s Brigade Company.

I’m told that hospital consultants ( and other senior staff) attend training sessions on how to break bad news to patients. To this day, it remains incomprehensible to me that anyone would think that it’s ‘acceptable practice’ to call a parent who you have never met and deliver such devastating news to a mother and child over the phone on a Friday afternoon.

Here is a portion of what I wrote in my journal later that day:

Blog post 19 April 13

I did not ‘google’ anything at that stage – I was scared and I didn’t want to know. It was Sunday night before I became aware of how much Leah already knew. I then asked her to show me what she had been reading online and we talked about it together.

I never imagined that anyone but me would ever glimpse some of my journal entries or that a day would come when I would share my thoughts and feelings as openly as I do now. However, writing is therapy. I derive enormous comfort and encouragement from following the blogs of other bereaved parents and some who have been bereaved in other ways. Not in a voyeuristic sense of course, it just helps to know that I’m not alone and that I’m not going crazy.

Me too

I follow several blogs of people with a Christian faith and I also follow some blogs that aren’t written from a faith perspective. Sometimes I have the time to read all the blogs that I follow, other times I don’t and I periodically do a ‘catch-up’.

A blog that I have recently started following and that is really blessing me is called  thelifeididntchoose (Walking in the Valley of the Shadow of Death). Melanie writes regularly and her posts are reasonably short and they are easy to understand. She writes from a faith perspective and she is authentic and real about how difficult this road is that we walk on as bereaved parents.

This morning as I sought strength to face yet another ‘hidden anniversary’ I clicked on  Melanie’s blog post from Thursday 14th April 2016. I knew immediately that it was God’s word for me in my situation. She quotes from a book by Nicholas P. Wolterstorff entitled Lament for a Son.

If sympathy for the world’s wounds is not enlarged by our anguish, if love for those around us is not expanded, if gratitude for what is good does not flame up, if insight is not deepened, if commitment to what is important is not strengthened, if aching for a new day is not intensified, if hope is weakened and faith diminished, if from the experience of death comes nothing good, then death has won. Then death, be proud.

So I shall struggle to live the reality of Christ’s rising and death’s dying. In my living, my son’s dying will not be the last word. But as I rise up, I bear the wounds of his death. My rising does not remove them. They mark me. If you want to know who I am, put your hand in.

~Nicholas Wolterstorff, Lament for a Son

I read these words and thought “Yes, that just about sums up how I feel, both the positive and the negative!”

Parenthood ~ a poem by Katie Dalgoutte

Parenthood ~ a poem by Katie Dalgoutte

Henry the Handsome and I

On the 20th December 2013 I shared another of katie Dalgoutte’s very moving poems on my Facebook page. Katie lives in the UK and her handsome son Henry was diagnosed with a grade 3 ependymoma ( brain tumour) at the age of 13 months old in January 2013. Henry is currently doing very well.

Katie speaks for so many of us “oncology mums” with her poetry. I previously published her very powerful poem Imagine on this blog.

Katie’s poem ‘Parenthood’ describes exactly how I was feeling when I posted it on my Facebook wall that day in December 2013. Sadly eight days later, Leah was critically ill in Intensive Care.

Parenthood

Being a parent is such a privilege and joy,

Such years of fun and love to enjoy.

But sometimes with joy comes worry and strike,

A fear that threatens your beautiful child’s life.

We hold on to the reigns, but we lose control,

We are forced to take on so many roles.

Today I’m a counsellor, I’ll comfort my child,

I’ll provide cuddles when they’re going wild,

I am a physio, helping move on,

Support them in learning skills that have just gone.

I am a researcher, searching for answers,

Praying for cures for these horrible cancers

I am a nurse handing out drugs,

When all I once knew was dealing in hugs.

I am a doctor using medical words,

Vocabulary not long ago I’d never heard

I am a dietician praying that he’ll eat,

Avoiding sickness and nausea becomes a treat.

I am a therapist encouraging speech,

Loving and nurturing, trying to teach.

I am a psychologist, doing my best,

When inside myself I’m feeling distressed.

I am an actress pretending to be

A strong happy parent, with no cracks to see.

I am a clown creating laughter,

I’ll strive to make memories today and hereafter.

But most of all I’m still just a mother

Living each day at a time.

All I want in life is for him to be here

My child, my world, my life, my all.

By Katie, Henry’s mummy. 16th October 2013 ©

 

Katie Dalgoutte is an amazing person, as are so many parents of very ill children. Katie has set up a charity called Henry’s Holiday Help. It is a small charity that provides local children (Bury St. Edmunds area) diagnosed with cancer from 2013 onwards, with some money towards a holiday to enjoy during or after treatment.

During this season of goodwill perhaps you would like to make a donation; their gofundme page can be found here. Alternatively, you can contact Katie at henrysholidayhelp@gmail.com or go to the facebook page https://www.facebook.com/HenryTheHandsomesJourney/.

 

The Heart of Christmas

The Heart of Christmas

The heart of Christmas has a name

In 2008, in St. Jude Children’s Research Hospital in Memphis,Tennessee, a 15 month old little boy called Dax was diagnosed with AML M7 leukemia. After the chemotherapy treatments failed to bring his leukaemia under control, Dax was enrolled in an experimental protocol to undergo a stem cell transplant.

Dax received his first transplant from his mother, Julie’s stem cells. However, the cancer soon returned with a vengeance in Dax’s small body. Again, St. Jude offered another transplant, but unfortunately Dax’s little body just couldn’t beat the disease and he returned home to Washington with his parents in mid-October 2009 to “Cherish Every Moment”.

The doctors thought Dax probably would not live through Christmas. At home with Dax, Julie decided to celebrate one last Christmas with her son. Dax especially loved the Christmas lights on the tree and on the house. Soon the neighborhood began asking why they had Christmas lights up before Halloween? As the story spread, within days the neighborhood and soon the town of Washington was lit up for Dax.

Dax did live to see Christmas day. He passed away on December 30th, 2009.

Singer and songwriter, Matthew West reached out to help after hearing Dax’s story. He wrote a song called One Last Christmas and the song went viral in 2011. I heard about it and thought that it was both very beautiful and very emotional! I shared it on my Facebook page on the 9th December 2011 with the caption “Have the tissues ready.

 

We didn’t need tissues in our family during Christmas 2011, but 2012 was a difficult year for many reasons. In September 2012 we were all devastated when a very close friend of my eldest daughter Rachel took his own life. Rachel was contacted by the person who found him. Rachel immediately phoned me at work. When I had composed myself enough to drive, I collected both Rachel and Leah and we went to this young man’s family home. It was heart-breaking.

On Christmas morning 2012 our youngest child’s pet hamster died, having been attacked by one of our house cats. Miriam loved that little animal dearly and she sobbed for hours. Also on Christmas Day 2012 I developed the worst flu that I’ve ever had in my life and I spent most of the Christmas holidays in bed, shivering, coughing and struggling to breathe.

Sadly I have very few photos taken Christmas 2012. Leah’s fifteenth birthday celebrations over the New Year were also marred by a phone call from our family doctor suggesting that Leah may have leukaemia.

Although Leah didn’t actually have leukaemia, it took months to get the correct diagnosis of a rare haematological malignancy known as myelodysplasia with monosomy 7. On one occasion, when Leah was an inpatient on our local haematology/oncology ward, a doctor told us that all that was wrong with her was constipation and he discharged her home to take Movicol.

Thankfully, ten minutes later a consultant haematologist came along and told us to stay in hospital and he ordered more tests. I’m convinced that Leah would have died – of negligence – if we had listened to the first doctor and gone home. At least we now know that everything that could have been done to save Leah’s life was done.

Leah’s illness entailed her and I spending approximately 20 weeks away from home and family. After having her bone marrow transplant in Bristol Children’s Hospital Leah then got just six short weeks at home. She had one last Christmas – she made it to 8.30am on Friday 27th December 2013 before being admitted to hospital for the last time.

The next time that I returned home was on Thursday evening the 16th January 2014, when I gathered up Leah’s selection boxes, her Terry’s chocolate orange, her Christmas presents and the wrapping paper that she had left strewn around her bedroom. Feeling dazed and numb, I tidied them all away along with her unopened birthday presents, to make room for her white coffin.

The story of Dax Locke, his illness and his last Christmas have been made into a film called The Heart of Christmas.

 

Miriam and I watched this film last night. It is a sad film but it is also beautiful, because it encourages us to “cherish the moment” and to appreciate the truly important things in life – our relationships with those we love.

Since Dax’s death, his Mum Julie has worked tirelessly to support other families with a child going through cancer treatment. She has set up The “Cherish Every Moment” Dax Foundation and has raised over 1.6 million dollars for the St. Jude Children’s Research Hospital where her son received his treatment.

Like me she knows that everything possible was done to save her child’s life, but that with ongoing investment into research, more can be done to improve the survival rates from children’s cancers and to minimise the toxic effects of treatments.  

 

IMAGINE by Katie Dalgoutte

IMAGINE by Katie Dalgoutte

awareness-card-maria

September is Childhood Cancer Awareness month.

There was a time when I did not know this.

In September 2013, Leah and I were in the third month of our stay in Bristol, where she had received a bone marrow transplant for myelodysplasia and monosomy 7, a rare haematological malignancy. In Leah’s case this was caused by an even rarer GATA2 genetic mutation.

On Monday 30th September 2013, we had an appointment with Leah’s consultant, at which we had been promised that Leah would be given a discharge date and the go ahead to book our flights back home to Ireland. Leah was so excited, she could hardly wait.

Devastatingly, Leah became very unwell on the Sunday night. Leah saw her consultant alright – he arranged for her to be readmitted to a tiny isolation room on the Bone Marrow Transplant Unit. We were heartbroken.

While in that room, I first discovered the poem “Imagine” by Katie Dalgoutte.

In this poem Katie describes what I was feeling, but couldn’t put into words.

I have never been able to read this poem without crying.

“Imagine”

Imagine being told your child is seriously ill.

Imagine crying until you think there’s nothing left.

Imagine feeling like you’ve been punched in the stomach and wandering the corridors, as if your life was on pause for days on end, not able to comprehend what is happening.

Imagine signing a consent form knowing that death is an option.

Imagine having to hand over your child to surgeons for endless hours and waiting…

Imagine having to watch as your once active child isn’t even able to open their eyes for a week.

Imagine the terror…

Imagine the pain of having to leave your baby in the care of strangers and not being able to sleep by their side.

Imagine standing by as your baby’s body is pumped full of poison.

Imagine holding your baby while someone holds a mask over their face as they struggle in fright.

Imagine holding your baby countless times while someone sticks needles in them while they scream.

Imagine the guilt…

Imagine being told the percentage chance that your child might survive or leave you.

Imagine holding back the tears when your other child is carried away from you screaming “mummy” not understanding why you won’t come home.

Imagine watching as within two days your child loses all their hair.

Imagine losing all your independence and identity and just becoming someone’s Mummy.

Imagine not being able to leave the house for fear of infection.

Imagine not being to able to make any plans apart from hospital visits.

Imagine being stuck in isolation and not seeing anything but four walls for days on end.

Imagine learning a whole new vocabulary of words which is all you talk about anymore.

Imagine good friends being too uncomfortable to see you or speak to you anymore.

Imagine the loneliness…

Imagine perfect strangers passing comment about your son

But with the emptiness …

Imagine the kindness of strangers who don’t know you

Imagine the incredible support from people you’ve never met but know how it feels.

Imagine how special each cuddle is that you feel the need to memorise it.

Imagine the magic of each smile knowing that this smile was lost for weeks and now it’s back

Imagine how fragile and precious life feels

September is Childhood Cancer Awareness month, if I hadn’t told you, would you have known? It’s swept under the carpet as a taboo subject.

Imagine if it couldn’t be taboo in your world, because it was your world…

Imagine if I had known the symptoms,

Imagine if all GPs knew the symptoms,

Imagine if you felt you had the power to help others, not be in the same position…

Imagine … Don’t pity, don’t sympathise, just spread awareness and just imagine, because it could be you …..

                         by Katie Dalgoutte

Leah asleep - awareness month

awareness-card-Ted

A Faith Story – Part 2 (and the importance of SafeTALK)

A Faith Story – Part 2 (and the importance of SafeTALK)

Leah in the Bone Marrow Transplant Unit July 2013
Leah in the Bone Marrow Transplant Unit July 2013

Following on from yesterday’s Faith Story, I thought that I would share a previously unpublished piece of Leah’s ‘Faith Story‘ in her own words.

One of the youth organisations that Leah attended was a group called BK Banter run in Tamlaghtfinlagan Church of Ireland church hall in Ballykelly.

Tamlaghtfinlagan Parish Church is a small but very pretty church that was built in 1795 with funds provided by the Earl Bishop of Bristol and the Hon. John Beresford. The Bishop was very fond of building – Mussenden Temple and Downhill House are two other examples of his endeavours.

On the 15th June 2013 the young people were asked to write a letter to God and put it into a sealed envelope with their name on it. The youth leaders then explained that they would keep these letters in their sealed envelopes and return them to the young people in one year’s time.

Leah died six months later, so hers was returned to me then. It is so very precious to me.

I know that the print is quite faint so I have typed out Leah’s words underneath.

Leah's Letter June 2013

Leah’s Letter To God

        Dear God,

Things are kind of crazy at the moment. Having cancer is mad and it’s a completely different world, I’m so scared. But in a years time I’ll be reading this and I’ll have had my transplant.

Lord I pray for healing and a full recovery. You are a God of miracles and You can move mountains for me! I want to focus on You and thank you for the blessings I’ve had this year.

Firstly for Nic, he has been so supportive, loving and caring. I really hope that when I read this next year that we will still be in a happy and Christ centered relationship.

I thank You for the blessings through the LOST Team, for Emma and our friendship and for Anne, Brian and Lisa, for the love they have shown me.

I want to thank You for being such an awesome and unconditional loving God, even though at times it feels like I cannot hear You, but God, I want this to be a testament of faith that next year when I read this, I will know that never once did You leave me and never once did I ever walk alone.

Your daughter X

The ‘Anne, Brian and Lisa’ that Leah refers to, were youth leaders on the LOST Team.

Barely two weeks to go and September will be upon us. Then our teachers AND our youth leaders will all be back in action, influencing the lives of our young people.

I want to say to anyone who works with young people, either in a paid or a voluntary capacity – Do not underestimate the importance of your role, or the extent of your influence in the lives of our young people.

Some of our young people are incredibly vulnerable and there’s often no way of knowing by outward appearance, just how vulnerable a young person is on the inside.

According to youngminds.org.uk

  • 1 in 10 children and young people aged 5 – 16 suffer from a diagnosable mental health disorder – that is around three children in every class
  • Between 1 in every 12 and 1 in 15 children and young people deliberately self-harm 
  • There has been a big increase in the number of young people being admitted to hospital because of self harm. Over the last ten years this figure has increased by 68%
  • 0.2% or about 8,700 aged 5-10 year-olds are seriously depressed.
  • 1.4% or about 62,000 aged 11-16 year-olds are seriously depressed.

If we are a people of faith, then we can pray earnestly for the young people that we come in contact with.

We can also avail of short, well recognised training courses like the widely available half day SafeTALK Training.

According to their website – “safeTALK is a half-day alertness training that prepares anyone over the age of 15, regardless of prior experience or training, to become a suicide-alert helper. Most people with thoughts of suicide don’t truly want to die, but are struggling with the pain in their lives. Through their words and actions, they invite help to stay alive. safeTALK-trained helpers can recognize these invitations and take action by connecting them with life-saving intervention resources.

Sometimes, providing a caring, listening ear and signposting somebody to an appropriate source of help, is the most important thing that we can do.