BLOODWISE – What’s In A Name?

September is not only Childhood Cancer Awareness Month, it is also Blood Cancer Awareness Month.

This month, the charity formerly known as Leukaemia & Lymphoma Research have changed their name to Bloodwise. To coincide, they have launched a huge media awareness campaign in the UK.

I think that the name change and media awareness campaign is a brilliant idea.

Bloodwise tells us that –

There are 137 types of blood cancer and related disorders.

When Leah was initially diagnosed, we did not know where to turn. Nobody seemed to have heard of myelodysplasia with monosomy 7. We felt so isolated and alone. Any of the well known blood cancer charities just seemed to talk about leukaemia and lymphoma, so I thought that there was no point in contacting them for help and advice.

The name Bloodwise seems way more inclusive. I visited their new web-site, clicked on the menu tab in the top left hand corner, selected Information and Support, which caused another menu to pop up. Here I clicked on Information and Support, causing a new page to open. When I scroll down this page I see a sentence “I am looking for information on All blood cancers” and clicking the down arrow at the end of this, gives a drop down box where I see lists of various types of leukaemia, lymphoma and Other blood cancers which is where Myelodysplasia/Myelodysplastic syndromes are mentioned.

When you visit their web-page, these headings are all ‘hyperlinks’, so if you click on any of them, you get more information about that particular diagnosis. So, for example, if I click on Myelodysplastic Syndromes, this page opens.

Well done Bloodwise – I like your rebranding! I also like your commitment to research, especially research into understanding the genetics of some blood cancers.

Two weeks after Leah received her diagnosis at Belfast City Hospital I contacted a member of staff at the Sperrin Unit looking for help and support. The Sperrin Unit at Altnagelvin Hospital is our local Haematology/Oncology Unit where Leah had been having investigations for four months prior to her diagnosis. The staff there referred us to the N.I. Cancer Fund for Children, who continue to provide us with very valuable support.

The following week, while attending an appointment at the Regional Fertility Clinic at ‘The Royal’ in Belfast, Leah suggested that we visit the Macmillan Information Service in the main hospital. The Macmillan Information Service Manager there referred Leah to a Clic Sargent Social Worker and a TYA Clinical Nurse Specialist, both based at Belfast City Hospital, where Leah had many of her appointments post diagnosis.

It was such a huge relief to us to have support at last and to be able to talk to people who understood. Finally we had found people who could answer some of our questions and who could help us start making sense of everything that was happening.

It wasn’t just our friends and family who hadn’t heard of Leah’s diagnosis before, on several occasions in N. Ireland I encountered nurses and doctors who hadn’t heard of it either.

On one occasion, when Leah was an inpatient, a young doctor held up Leah’s notes and said to me “Do I have to read through all of this or can you explain everything to me?” I very much appreciated his honesty and I happily explained everything to him.

To be honest, I found the attitude of this young doctor far more respectful, than the attitude of the young consultant who, when Leah was dying, said to me, “I’m glad that your niece is here, because she’s a nurse and she can explain the medical terminology to you.” Leah had been two and a half weeks in that unit at this stage – did I really come across as not knowing what they were talking about?

I never advertised the fact that I’m a nurse (dual qualified – general adult and mental health) as I just wanted to be treated as “Leah’s Mummy”.

However, in my experience, most parents of children and young people with chronic/life limiting illnesses very quickly become experts in their child’s condition and want to be treated as partners in their child’s care by healthcare professionals.

Furthermore, if this doctor had thought that I didn’t understand what he was saying, then he should have used simpler terminology or explained himself better. My daughter was D-Y-I-N-G, we were arranging her end of life care, within twenty four hours she was gone.

As a healthcare professional myself, I consider that it’s my responsibility to ensure that service users can understand me, taking into account their cultural and ethnic background, standard of education and any disability that may impact on communication.

Dr Kate Granger is spot on in her most recent blog post when she talks about the importance of communication and compassion. The many healthcare staff who exemplified those two qualities while caring for Leah and I, certainly made our difficult journey that little bit easier and will always be fondly remembered by me.

In closing, I want to raise awareness that many people with a blood cancer will require a bone marrow or stem cell transplant.

Unfortunately this didn’t save Leah’s life, although it may have given us some extra, precious, time.

Margot Martini

           Nevertheless, a bone marrow/stem cell transplant has saved the lives of many other adults and children.

Here are some facts, taken from the website Team Margot, which is run by the parents of a gorgeous little girl called Margot Martini, who sadly also lost her life to blood cancer:

OVER 37,000 PEOPLE WORLDWIDE NEED A BONE MARROW TRANSPLANT…

BUT THEY MUST FIRST FIND A MATCHING DONOR.

ON AVERAGE, ONLY HALF OF THOSE SEEKING A MATCHING DONOR WILL EVER FIND ONE.

THE ODDS OF SUCCESS FALL TO JUST 21% IF THE PATIENT HAS AN ETHNIC OR MIXED RACE HERITAGE.

IT NEEDN’T BE THAT WAY – YOU CAN HELP!

PLEASE REGISTER AS A POTENTIAL DONOR –

YOU CAN SAVE A LIFE.

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!

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.

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.”

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.

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

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

Miriam definitely didn’t love the spiders.

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

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!

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!

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.