About Leah

image

This blog grew out of a private Facebook page of the same name, that my 15 year old daughter Leah and I set up in the Summer of 2013.

We live near Limavady in N. Ireland.

Leah became unwell towards the end of 2012 and had her first abnormal blood test on her fifteenth birthday, the 31st December 2012.

On Sunday the 24th March 2013, the night before her first bone marrow biopsy, one of Leah’s Church Youth Leaders recorded a short video of her talking about her relationship with God, which you can watch here.

In April 2013 Leah was diagnosed with paediatric myelodysplasia with monosomy 7. This is a very rare haematological malignancy.

We were subsequently told that this had been caused by an even rarer GATA2 genetic mutation. Click here to learn more about GATA2 deficiencies. 

Leah’s brother’s bone marrow was a 10/10 match and Leah had a bone marrow transplant on the 1st August 2013 in Bristol Children’s Hospital in England. This transplant was successful in curing her myelodysplasia and monosomy 7,

Leah however, had several post-transplant complications.

Nevertheless she appeared to be recovering and the doctors were hopeful.

Sadly, on Friday 27th December 2013, I took Leah to a routine outpatient appointment at Belfast City Hospital, from which she never returned.

Within 24hrs Leah was in ICU, struggling to breathe due to pneumonitis, a rare complication of transplant.

On Thursday 16th January 2014, in the Northern Ireland Children’s Hospice, Leah died in peace and dignity, surrounded by love.

Advertisements

22 thoughts on “About Leah

  1. Friends of ours lost their beautiful daughter, December 2012, from adrenal cancer. Clare was happily anticipating her 15th birthday and going home for Christmas from St. Jude’s but God wanted her to come Home. You are blessed to have your Faith and your family, as Clare’s family…..I lost my husband, July 4, 2009 and still grieve but we both were grateful it was not one of our children or grandchildren. Thank you for so eloquently sharing your journey. Blessing to you and yours.

    Liked by 1 person

  2. Oh Charlene I’m so sorry to hear about Clare and about your husband – grief and loss is so very difficult.
    I’m currently reading “One Thousand Gifts” by Ann Voskamp, which some who grieve find helpful.
    Thank you so much for your kind comments 💕

    Like

  3. Dear Victoria and family, to lose a child is the hardest thing and to a cancer … I attend bch for a blood cancer and I can hear the exchange between your family and the haematologist. So unfair. Take care J

    Liked by 1 person

    1. Dear Jane, thank you for visiting my blog, and taking the time to say “hi”. I hope that your treatment is going as well as possible for you, without too many unpleasant side effects. xx

      Like

  4. Hi Victoria

    Thank you for sharing your story. Leah is just beautiful. We lost our precious little son just before his 3rd birthday at the end of February this year to AML after relapsing last November. My husband and I strongly suspect he too had MDS and it developed into AML before it was diagnosed.

    I am so sorry for any parent having to go through this heartache.

    Can I ask you why Leah wasn’t treated in the haematology unit at the Childrens hospital in Belfast?

    Thinking of you
    Christina

    Like

    1. Dear Christina,
      I’m so sorry about your wee boy, you must be absolutely devastated.
      When Leah was going for her first bone marrow biopsy we were told that if they found NOTHING abnormal – they were 95% certain that would be the outcome – she would remain under the care of the haematology team at the Sperrin Unit in Altnagelvin Hospital where we were very happy.
      If they did find something abnormal, we were told that she would be immediately transferred to the care of the paediatric haematology team at the Royal.
      That’s why I was so upset when an unfamiliar doctor from Belfast City Hospital delivered her diagnosis over the phone at 4.20pm on Friday 19th April 2013.
      He said it was because Dr McCartney was on her honeymoon, but she’s not the only paediatric haematologist there. At the time it made me feel very angry.
      Several weeks down the line we had a joint appointment with Dr McCartney and our consultant at the City Hospital. We were told that Leah could transfer to paediatric services then if we wished, but they would transfer her back again in December as soon as she turned 16. At that stage we had formed good relationships with the staff in the City Hospital and we knew we were heading to Bristol Children’s Hospital for Leah’s treatment, so there didn’t seem much point.
      I’m really curious how you even know that MDS exists?
      MDS in children is not well known here in Ireland – that’s why it took so long to get Leah’s diagnosis – almost 4 months. Her first bone marrow biopsy was scheduled by Altnagelvin but cancelled by the Royal as they said that her weekly blood results weren’t consistent with any nasty bone marrow disorders – they were, even more so if her other symptoms had been taken into account! 😦
      The delay however did not negatively influence the final outcome in any way, as she died from side-effects of her treatment not from her original illness.

      Like

  5. Its devastating to read what happened to your daughter. Dr macartney went off on maternity through Ethans relapse treatment and we were looked after by Dr Carole Cairns who the paediatric haematology specialist. When we were on the ward for relapse treatment a little boy came in with Mds. When she was talking about it we felt sick because we had worried at times that there wasn’t something quite right about Ethan before diagnosis but there was never really enough to keep taking him back to the drs. Symptoms were very vague but now we know something like mds exists ee have no doubt that he had it. Our consultant took on board when we brought this up at the new year and even checked all his old bone marrows again but could see no evidence. She explained once it turns into mds its very difficult to detect. And she also said aml that develops from mds is very difficult to treat ie Ethan. He was to go for transplant and we didn’t even get as far as Bristol because we couldn’t get him back in to remission. We are devastated and heartbroken that that disease took him. He suffered terribly.

    Like

      1. Yes the type of AML that develops from MDS is VERY difficult to treat. Re detecting it – Leah’s repeat biopsy results (pre transplant) done in the City Hospital appeared to deliver relatively good news, but when they were sent to Bristol for more in-depth analysis they showed very worrying changes. I was glad that we didn’t know this at the time though – we had enough bad news to be dealing with.
        I’m very sorry to hear that your little boy suffered so much – these memories can be very difficult to live with.
        I have benefitted greatly from the support provided by Action Cancer for counselling, complementary therapies and their Positive Living programme.

        Like

  6. God bless you and your family as you walk through this painful process of losing your precious Leah. She defines beauty and strength. I have been on this walk for six years since losing my son, Brandon, and although I have been able to cope better over time, there are still days when grief is new all over again. My prayer is that God will give you all that you will need to continue Leah’s life story…after all, she is still alive…now more than ever!! Hold on to that, my friend..It Is well.

    Like

  7. I’m so sorry you lost your daughter. I can only imagine what you must have gone through and are still. I had never heard of MDS until my mum was diagnosed with it eventually and later died with leukaemia. She was eighty. I still feel the loss of my mum but dread to think what I would feel if it were my child. My heartfelt sympathy to you and your family.x

    Liked by 1 person

  8. I am so sorry for all you’ve gone through with beautiful Leah. Losing a child is an amputation of the soul. No one can imagine the anguish. I’m certain you miss her every day. It’s been many years since I lost my son; I can honestly say that I am able to smile now when I remember him – but I will never forget the grief I suffered with and hit inside for many, many years. Hang in there.

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s