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.

 

Operation Beautiful~One Note At A Time

Operation Beautiful~One Note At A Time

Tomorrow I’m leading Children’s Church – something I seldom volunteer for since Leah died. This morning I was scouring the house for our  Veggietales  DVD collection to use one of them in Children’s Church, when it occurred to me that some of them might be in Leah’s bedroom. As I was searching through Leah’s possessions, I found myself lingering, reminiscing, and grieving.

Sometimes people ask me whether it gets easier as time goes on? I’m not sure if the pain of child loss ever gets any less. What has changed as time goes on is my ability to deal with the pain. I’m gradually learning some coping strategies that enable me to live with the pain of child loss, so that I can, by God’s grace, live a relatively normal life most of the time.

Choose

There are some of Leah’s belongings that I haven’t looked through at all since she died. Today, while going through a few of those, I came across a booklet that she had received at  Girl’s Brigade called ‘Spiritual Sparkles‘.

Spiritual Sparkles.jpg

I know that being a part of Girl’s Brigade was really important to Leah and that she would probably have read this booklet from cover to cover. I found myself glancing through it as I thought about my daughter. My attention was suddenly gripped by this page:

Secret Post-iter.jpg

The ‘secret post-iter‘! That’s where she got the idea from! Leah was well known for writing encouraging notes on post-its and leaving them for others to read. In March 2013 Leah introduced this concept at the LOST outreach weekend for young people in Limavady.

Before we left Sam’s House in Bristol in October 2013, I was dispatched to the shops to buy her a packet of post-it notes. Afterwards one of our friends posted this on Facebook:

Sams House Post It (1)

After Leah died our eldest daughter Rachel showed me this post-it that Leah had stuck on her bedroom mirror:

Rachel's Post It

Leah also had lots of post-its stuck up around her own bedroom to encourage her as she recovered from her bone marrow transplant and battled GvHD (graft vs host disease). She struggled with the very unpleasant side-effects of high dose steroid therapy and chemotherapy hair loss and she needed all the encouragement she could find:

I Peter 3 v 3

I miss Leah’s little notes; every time I do a clear out I find some little card or note of encouragement that I received from her over the years. I cry for what I have lost, I thank God for what I have had and I carefully place each note or card in a Memory Box.

I think the idea behind Operation Beautiful  is really worthwhile. Their website explains their purpose:

The mission of Operation Beautiful is to post anonymous notes in public places for other people to find. The point is that WE ARE ALL BEAUTIFUL. You are enough… just the way you are!

I know that Leah was very concerned about the many negative messages that young people are getting and the effect that this is having on their self image and their self esteem. I can see why this simple concept would have really appealed to her. I think that it’s a lovely idea.

The Bells of Christmas

The Bells of Christmas

Christmas bells

Christmas Eve – this time two years ago the rest of the family moved in to our new house. All six of us slept together under the one roof for the first time in six months. I went to bed feeling so happy, so content, so ‘full’.

Within four days the bells of Christmas had been replaced by the ‘bells’ of the monitors to which Leah was attached in the Intensive Care Unit where she had been admitted as a result of respiratory failure.

Leah in ICU


Every time Leah’s blood oxygen levels dipped, the monitors chimed and my heartbreak intensified. For the first five nights I slept in a chair beside Leah. During one of these nights there was a medical crisis and the monitors alarmed almost continuously. In the morning the staff looked at me in amazement and asked me how I had slept through the whole commotion. I shrugged my shoulders and gave a vague answer. In actual fact, I had been well aware of what was happening but I had kept my eyes closed and had held my daughter’s hand (whenever I wasn’t in the way) while praying silently. I was worried that if the staff knew that I was awake that they would put me out of the room and then I wouldn’t be there to comfort Leah.

Many days as I sat quietly holding Leah’s hand, with her favourite music playing softly in the background, the chimes of the monitors would intrude unpleasantly on our thoughts – reminding us of what we didn’t want to be reminded about – that Leah’s life hung in the balance.

Finally on the 16th January 2014, when Leah had been transferred to the Children’s Hospice for her end of life care, a monitor started to sound an alarm as the life seeped slowly from Leah’s body – swiftly and silently the doctor pressed the mute button on all of the alarms. We didn’t need them now, as sadly for us, the time had come to let Leah go peacefully into the waiting arms of her loving Heavenly Father.

Now I live and ‘celebrate’ Christmas in a dichotomy – one part of me is overwhelmed with the sadness of Leah not being here, yet the other part of me celebrates the birth of the Christ Child and the many blessings with which God has enriched my life.

Each one of our four children is a blessing in my life. My friends and my family who surround me with love and comfort are a blessing. Having a job that I love and work colleagues whose company I enjoy is a great blessing. I have a beautiful house which is a blessing.

Let the words of Chris De Burgh be my Christmas greetings to you, my faithful readers:

The Bells Of Christmas

If you know someone who is lonely this Christmas,
Reach out a hand and open the door,
Bring them inside in the spirit of Christmas
And show what lies in store;

If you know someone who’s forgotten that Christmas,
Will always shine in the eyes of a child,
Open their hearts to the memories of Christmas
And take them back in time;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Let the light that shines with the wonders of Christmas,
Fill every heart all over the world,
Let us believe in the spirit of Christmas
And dream of peace on earth;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Have a very Merry Christmas everyone,
(Ring the bells)
Celebrate the coming of the newborn son,
(Merry Christmas)
Everywhere this happy day we have begun,
(Ring the bells)
To ring the bells of Christmas,
(Merry Christmas)
Ring the bells, ring the bells!

 

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/.

 

Guest Post – Dear Cancer Part 6

Guest Post – Dear Cancer Part 6

Dr Kate Granger writes with such simplicity yet such depth, her words move me to tears.

What does she ask for?

A few more weeks of being a good doctor, working in the NHS, serving her patients, doing the job that she loves…..

drkategranger

Dear Cancer,

Well, this was never a letter I expected to write… 4 years we’ve shared this curious relationship of ours. 4 years. Who’d have thought it?

Last time I wrote I was incredibly frightened. You had woken up just before Christmas and caused no end of issues. I’m not sure if I was more fearful of the impact of you on my creaking body or the impact further chemotherapy and the associated unrelenting infections were going to have on me.

I struggled so much with the poisoning this time, not just physically, but mentally too. It was almost as if every little essence of Kate was trickling away with each infusion. I don’t mind admitting to you how down I was, especially when I decided enough was enough on chemo front. I didn’t want to work. I didn’t know what to do with myself. I guess I just felt…

View original post 467 more words

Alexandra – A Very Beautiful Girl

Alexandra – A Very Beautiful Girl

When Leah was on the lovely purpose built Adolescent Ward in Bristol, she was in isolation and could only avail of the excellent recreational facilities whenever none of the other patients were using them.

Adolescent Ward,  Bristol children's Hospital
Adolescent Ward,
Bristol children’s Hospital

However some of the other young patients were well enough to be “out and about” and they clearly enjoyed a break from the confines of their room.

I also liked to ‘escape’ periodically from our lovely little room. I used to get an opportunity to do this when Leah was watching television. Leah liked the fact that I would bring back the ‘ward news’ and thereby give us something different to talk about.

Some of these young patients were bored and only too glad of an adult to interact with. Others were more shy. One of those whom I regularly saw, pushing her IV pole around the ward, was Alex Lacey. I used to smile at her and she would smile shyly back.

The adolescent ward catered for teenagers with any kind of medical condition, but Alex’s chemotherapy baldness, indicated to me that she was there for similar reasons to Leah.

Then, in October 2013, Leah and Alex were both discharged to Sam’s House, the Clic Sargent Hostel. Leah and Alex met and chatted. Leah said to me afterwards: “Mummy, I wish that I had met Alex at the start of my time here, not the end, she’s so lovely.”

I wished that they had met sooner too, Leah had longed so much for company of her own age. I could see that she and Alex had immediately ‘clicked’ and were clearly very compatible.

I met Alex’s lovely Mum and we hugged – relationships tend to be ‘fast-tracked’ in these ‘life and death’ situations. The Lacey’s were getting ready to celebrate Christmas (yes, in October), as Alex would shortly be going for a bone marrow transplant and was not expected to be home in time for Christmas.

Leah and Alex exchanged contact details and promised to keep in touch.

Shortly after we returned home to Ireland, Leah and I were absolutely heartbroken, when Alex messaged Leah to say that there would be no bone marrow transplant – Alex’s lymphoma was incurable.

I really struggled to get my head around this.

As I subsequently encountered so many ‘firsts’ without my darling daughter, I thought of Alex’s parents – they were potentially having their ‘lasts’ with their darling, only, daughter.

My first Christmas without Leah, was their last Christmas with their daughter. I tried to imagine what that must feel like, but I couldn’t, not really.

Can we really and truly understand what anyone goes through, unless we have gone through it ourselves?

This morning Alex’s Mum posted the saddest message on her Facebook page – the kind of post that no parent ever wants to have to compose:

Our beautiful, precious daughter Alexandra has flown away to join the Angels. She passed away peacefully yesterday at home with David and myself by her side. Our hearts are forever broken. Xxx”

Alex

Please pray for all who mourn.

A few months back Alex recorded this very touching video in which she speaks so candidly about her illness, but without a trace of self-pity. I’ve watched it several times, but I have never been able to watch it without crying.

Alex’s lovely, gentle, sweet nature is so very evident.

Catching a Donkey

Catching a Donkey

A few months ago, a post popped up on my Facebook page regarding a new grant that was being awarded by the Leukaemia and Lymphoma Research blood cancer charity (now known as Bloodwise), to understand and improve clinical management of hereditary blood disorders – namely some types of acute myeloid leukaemia and myelodysplasia.

I clicked on this link and read as much about this research project as I could find online. I discovered that the grant had been awarded to Professor Jude Fitzgibbon at Barts Cancer Institute in London, along with Professor Inderjeet Dokal and Dr Tom Vulliamy.

One of the genetic defects that their research will focus on is GATA2, which is the genetic defect that caused Leah’s myelodysplasia and monosomy 7. In this blog post I write about my initial reaction to being told that Leah had a Gata2 mutation.

I am very excited that this research is taking place. It won’t help Leah, as nothing can bring her back, or make us miss her any less. However ANYTHING that potentially improves the survival chances and lessens the toxic treatment side affects, for people with a similar diagnosis to Leah, is good news to me.

I immediately made contact with one of the professors involved in the research. We exchanged some emails. He invited me to visit him at the genetic laboratory in Bart’s Cancer Institute should I ever be in London. At that stage I had no plans to visit London, but “where there’s a will, there’s a way“.

Reminds me of an incident from my childhood. I was ten years old and living with a family in Muiríoch, in Co Kerry for four months, to improve my spoken Irish.

I was really excited, because Fear An Tí (the man of the house) had told me that there was a parcel for me in the Post Office a few miles away. There was no cars in our village, the only mode of transport was a donkey and cart. He said that if I wanted to have my parcel, I would have to catch the donkey in the field and hitch it to the cart.

I ran out of the house, determined to catch that donkey and retrieve my parcel. I imagined that it would contain some treats from home.

Muiríoch on the Dingle Peninsula, was a long way from my home in Cork City, so I only received one visit from my family during the almost four months that I spent there, on a Gael Linn Scholarship. It might sound like an unusual arrangement, to send a ten year old child off to stay with a family that she’d never met before, who spoke a different language (Gaeilge), but it wasn’t unusual in those days. I returned home with a fluency and a deep love for my native tongue.

Before I reached the field, Bean An Tí (the woman of the house) made him tell me that there was no parcel for me – he had been teasing me to see if I really would try and catch that donkey!

image

As you can imagine, I was very upset and disappointed.

So yes, once I received the invitation from this professor, I became quietly determined to get there at some stage during their five year study.

Just to remove any ambiguity, he’s certainly no donkey and he definitely hasn’t disappointed me!

The opportunity for the visit presented itself much quicker than I anticipated, as when the girls and I were planning our trip to Bristol, we ending up including a few days in London.

I contacted the professor and we arranged a time and a date. He asked me to email him some questions to focus our discussion when we met. This is when I started to panic.

I did my nurse training in an era when nurses barely spoke to doctors. Certainly they never questioned them about anything. When I was a student nurse, Sr Bosco repeatedly told us “Keep your bowels open and your mouth shut and you will get on well in this hospital.”

It’s an inner dialogue that I had to constantly combat once Leah became seriously unwell early in 2013. I quickly discovered that as her parent, I was her voice, her defender and her advocate.

I also learned that my “gut instinct” as her Mum was sometimes more accurate than their medical training or hospital tests. Some doctors listened to me, some didn’t.

Many battles were fought (graciously, I hope) and many (but, by no means, all) were won – for Leah’s benefit, not mine.

The final battle sadly, was when I asked what my options were for Leah’s end of life care and the answer I was given was that I had no options – because Leah had respiratory failure and was on a ventilator, she would die in ICU.

Despite Sr Bosco’s near successful attempts to silence me, they underestimated the fact that they were talking to the girl who, at ten years old, was determined to run around that field until she caught the donkey and hitched it to the cart.

Thanks to the help of a work colleague and the input of a specialist in paediatric palliative care from the WHSCT – who dropped everything at short notice to make the 140 mile round trip to Belfast City Hospital – Leah died in peace and dignity, surrounded by love, in the N.I. Children’s Hospice.

I write about Leah’s end of life care here.

So a few weeks ago, I prayed and asked God to help me put together a few questions/discussion points for my meeting with some members of their research team.

The Bible says in James 1:5
“If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.”

I will tell you this, I pray for wisdom constantly, I really need it.

I managed to put together twelve questions/discussion pointers and sent them off. The professor seemed happy with them.

As the day approached, I again started to feel a little nervous, as the internal dialogue fuelled by Sr Bosco’s admonition, replayed in my head.

Thankfully, my eldest daughter decided to accompany me. She is doing a biology degree at Queen’s University which includes some modules on genetics.

We had been sent a map of the Charterhouse Square Campus where the Haematology-Oncology Centre is located and advised which tube stations were nearest. However I hadn’t thought to research how to get from the tube station to the Campus. Nor could the SatNav on my phone make any sense of the information I was giving it.

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Thankfully Rachel has excellent navigational skills that she did NOT inherit from me. We arrived at the unmanned locked security gates of the campus with just minutes to spare. I spied a young man approaching and asked if he could help us. Turned out, he works with the professor and was able to escort us right to our destination. I uttered a silent “Thank you, Lord.

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We were given a most interesting tour of their genetic laboratory. We had an hour with some members of the research team. They were absolutely lovely. We learned about their research. We also learned more about Gata2 genetic mutations and the very unpredictable way in which they can affect different people. I have increased in my understanding of how Leah’s GATA2 mutation (T354M) affected her personally.

I will continue to hope and pray that their research results in many more people who have Gata2 deficiencies surviving and having minimal treatment side effects.

As for the rest of our time in London?

I worshipped God at Holy Trinity Brompton on Sunday and enjoyed the lively style of their 11.30am service.

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Afterwards I nipped into Harrod’s Food Hall for a bite of lunch.

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On Monday, we went to London Zoo – I loved the sloth.

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Miriam definitely didn’t love the spiders.

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Rachel got up close and personal with a ring tailed lemur.

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After the Zoo we hung out for a bit in Camden. I found a Smoothie Bar while the girls shopped in Cyberdog – definitely not my scene!

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On another occasion we got henna painting on our hands and ate yummy Gujarati food at Sakonis in Wembley. We visited an Asian friend who very kindly dressed Rachel up in a Sari – I think she looks beautiful!

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The two girls also visited the Natural History Museum and Madame Tussaud’s. Our Avios Points, accumulated over many years, paid for our tickets into both London Zoo and Madame Tussaud’s.

Today, sadly, is the last day of our holidays, but we get to take all our happy memories home with us.