Today I’m out with Simon and his friends, celebrating the fact that he will be 16 tomorrow.
Sixteen – the birthday that Leah never got to celebrate because she was so ill.
She had no candles, no cake, we didn’t even sing happy birthday, she was just too sick.
We told her that we’d wait and have a big celebration when she got home.
I think that the angels in heaven must have had a party with her instead, because when we finally brought Leah home, it was to “wake” her body.
All of Leah’s unopened birthday presents were hastily stashed in a cupboard, along with her recently unwrapped Christmas presents.
Ever since Simon was in the final stages of Primary School, how he chooses to celebrate his birthday hasn’t changed.
I load up our big blue Citroen Synergie with him and his friends. We head first to the cinema, then to McDonalds.
I enjoy having a car full of young people – it reminds me of how life used to be.
Actually, when Simon was even younger, I used this same 7 seater car to collect his friends and take them to a soft play area for his birthday.
What I find really hard to believe, is that when I first started doing this, the British Army was still in Northern Ireland.
That feels like another life now, but I clearly remember going to the army living quarters in Ballykelly, to collect two of Simon’s young friends.
One was part of a Hong Kong regiment and the other was part of a regiment from Fiji. They were such beautifully mannered young boys.
I would never want to go back to the days of regular bomb scares, tight security and having our streets patrolled by soldiers, but I liked the ethnic diversity that these families brought to the school.
Isn’t it amazing all of the changes that we experience in our lifetime?
Some changes we embrace and welcome, other changes are ones that we find painful and sad, but life never remains static.
I’m glad that we have a God who is always there for us and who never changes:
Sometimes when I look back over everything that I’ve written in this blog about the care that Leah and I received during her illness, I worry that I haven’t said enough about all of the good care that we experienced.
I worry especially that I haven’t said enough regarding the many excellent staff that looked after us in Belfast City Hospital.
There are a few possible reasons for this:
Our first impressions of the City Hospital were very negative and I think that this in some ways coloured my subsequent perceptions.
Secondly, I always struggled with what I considered to be the lack of age appropriate care in an age appropriate environment in Belfast, for our fifteen year old daughter.
Thirdly, my emotions were in tatters during the two and a half weeks that Leah was dying in ICU in the City Hospital and that obviously coloured the lens through which I interpreted everything.
When Leah was in Bristol Children’s Hospital and developed complications post transplant, she was prescribed pain relief in the form of tramadol and oramorph – a derivative of morphine. I was slightly alarmed at this and had visions of my daughter becoming a junkie!
The doctor reassured me however and explained that a bone marrow transplant had very severe effects on the body and initially all of her pain receptors would be in a state of heightened awareness, so that any pain that she experienced would feel quite severe and needed to be treated as such.
This actually made sense to me. I noticed that Leah had also become quite “sound sensitive” and couldn’t cope with any noise – even a dripping tap drove her crazy.
Well, whenever Leah was dying in ICU, I reflected back on this and compared it to how I was now feeling emotionally.
I felt as if all of my emotional pain receptors were in a state of heightened awareness.
During Leah’s final weeks, there were three things that I desperately wanted from the hospital staff:
1) To be allowed to remain at my ill daughter’s bedside continuously. 2) To be kept fully informed of her medical condition and their treatment decisions. 3) For any staff that came in contact with me to show kindness and an awareness of my needs as Leah’s Mummy.
When what was happening to me did not meet the above criteria, my emotional pain transmitters started firing and at times this felt unbearably painful.
However, when all of the above criteria were being met, I felt calmer and I found it much easier to cope.
I have to say, that most of the staff were very kind.
Those that got it right for us got it very right.
We had got off to a shaky start (at the time of diagnosis) with our haematology consultant, but Leah & I quickly put that behind us when we discovered how kind and caring he really was and is.
Our TYA (Teenage and Young Adult )Cancer Nurse Specialist and our Clic SargentSocial Worker were there for us every step of the way and they were an enormous source of support to both of us. I don’t know how we would ever have managed without the two of them.
Most of the nurses were incredibly kind and caring, I wish that I could name them all and thank them individually.
There was two women who regularly cleaned the hospital during the night. They always had a smile and a kind word for me – they will never know how much this helped.
Sometimes, when a doctor wanted to talk to me, I was taken into the ICU office and two or three other members of staff piled in and watched while the doctor was talking to me. I detested this audience.
I was never told good news, so here I was, being told things about my daughter’s medical condition and life expectancy, that no parent ever wants to hear, struggling to maintain my dignity, while all of these pairs of eyes were fixed on me.
I would like to have been asked who I wanted to accompany me to meet with the doctor. I would most likely have chosen my TYA cancer nurse specialist, if she was available.
On another occasion, one of our favourite consultants was on duty, a young man who never failed to treat Leah and I with respect and compassion. When he wanted to speak to me, he “smuggled” me out of ICU and down a corridor and through another unit and into what looked like a store cupboard, far away from inquisitive eyes.
There, he gently, falteringly, explained to me that he really didn’t think that Leah was going to survive. Oh how I appreciated the respect that this doctor showed to me and his compassion. No, I didn’t want to hear what he was telling me, but it was so much easier to hear, when the information was delivered in a context that showed an understanding of my needs.
The day that Leah was being admitted to ICU it was the lovely consultant from Cork who assessed her, admitted her to ICU, then broke the news to me that my daughter was possibly going to die.
On Wednesday morning 15th January ’14 when we were in an end of life situation and Leah’s medical condition was rapidly deteriorating, the consultant from Cork, who always treated Leah and I with such dignity and respect, was mercifully once again on duty.
This incredibly compassionate man uttered the words that I will never forget “I’m off tomorrow morning – I will use this time to transfer your daughter to theN.I. Children’s Hospice.”
48hrs prior to this I had been told that under no circumstances could our daughter be transferred to the Children’s Hospice for her end of life care, as she was on a ventilator and too ill to be moved. I had found this very distressing as, if our daughter was going to die, we did not want her to die in critical care or even in an acute hospital setting.
When I was pregnant I was encouraged to write a “birth plan“. www.nhs.co.uk states “Use your birth plan as an opportunity to explain the things that really matter to you. However, remember to be flexible and recognise that things don’t always go to plan.”
Well, when Leah was dying I wanted a “death plan” – it was going to be my last act of love for my dying child. Of course, the “politically correct” term for this is an “end of life care plan”.
We have a large extended family who all needed the opportunity to say goodbye to Leah and she herself just loved big family get-togethers. No ICU anywhere could possibly have accommodated all of us. Least of all the ICU in Belfast City Hospital which does not even have a ‘relatives room‘ on site.
The Children’s Hospice was the only place that could accommodate our family’s needs and provide the type of end of life care that I wanted for Leah.
No, I didn’t want our daughter to die, of course I didn’t, but I thank God for all of the kindnesses that we experienced through it all, for the many people who touched our hearts along the way.
Leah was looked after by eight different consultants during her time in ICU, they all provided excellent medical care. They all cared about my daughter and they did everything humanly possible to save her life.
However, for me it was very special that the same kind, caring consultant from Cork (my hometown) who took Leah into ICU on the 27th December 2013, was the very same consultant who took her out of it and brought her to the N.I. Children’s Hospice on the 16th January 2014.
Away in a manger,
No crib for His bed
The little Lord Jesus
Laid down His sweet head
Be near me, Lord Jesus,
I ask Thee to stay
Close by me forever
And love me I pray
Bless all the dear children
In Thy tender care
And fit us for heaven
To live with Thee there
How can it be that after 10 months of daily crying and grieving that there are still whole areas of grief and loss that I haven’t even begun to address? All that it takes is some wee trigger and the floodgates of my emotions are thrown open.
Tonight at Girl’s Brigade the children were singing Christmas songs. This was the first time this year that I had heard any Christmas carols. It felt like a painful wound had been suddenly opened.
Last year our Christmas came to an unexpected and very painful end. On Friday 27th December I left the house at 8am with Rachel and Leah to drive to Belfast to take Leah to her regular weekly appointment at Belfast City Hospital.
We were all in good form because that night we were going to a big family get together in Donegal – our first since going to Bristol in July for Leah’s bone marrow transplant. Leah’s consultant had given her permission to go to the party.
My sister was flying in from London and was meeting us at the City Hospital. Leah’s boyfriend had been in England over Christmas and he was flying back that day in time for the party too. Leah was so excited.
By late afternoon Leah’s two aunties, her boyfriend and his mother had all congregated at the City Hospital. Sadly they all, along with Rachel, had to leave the hospital without us. Our Christmas celebrations had ended.
I eventually returned home on Thursday 16th January. I gathered up Leah’s Christmas presents, the packaging, the Christmas paper, cards, selection boxes and her unopened birthday presents and made room for her coffin.
Although “Away in a Manger” made me cry tonight – the words are also very beautiful. They tell the story of that first Christmas when Jesus – our saviour – came to earth as a baby. The carol finishes with a prayer that all of God’s children be made fit for heaven to live with Him there.
When Leah was three years old she asked Jesus to forgive her sins and to live in her heart as Lord and Saviour. Through her daily walk with God, through attending Church and faith based organisations – including Girl’s Brigade – Leah grew in her knowledge and understanding of God.
The peace and serenity with which Leah could face death leaves me in no doubt that the last verse of “Away in a Manger” is true of her. That assurance, despite all my tears and sadness, brings me great comfort.
In Bristol Children’s Hospital the cleaning staff always knocked and asked our permission before entering Leah’s room to clean it. If we indicated that it wasn’t a good time they would go away and came back later. If Leah and I were snuggled up together in her hospital bed watching a DVD then the nursing staff often apologized for intruding. Shortly after Leah was admitted to the Bone Marrow Transplant Unit there I was quite taken aback when our very senior haematology consultant even apologized for disturbing us when he came to see Leah!
However once Leah became an adult (i.e. over 16) and was in the adult ICU in Belfast City Hospital, there were times when I felt like the intruder. Now I was the person on the outside knocking and asking permission to enter. I hadn’t changed but the environment had changed, policies and procedures had changed, and my heart was breaking.
In Bristol when Leah was ill I provided all her personal care, showered her, dressed her, changed her bed linen etc. The nurses administered her medication, worked the pumps, nasogastric feeds etc. It never occurred to me that it would be so different when we returned to adult services in N.I..
On Thursday morning 2nd January I could see that Leah’s oxygen levels were dropping and that she was finding it increasingly difficult to breathe. I knew that putting her on a ventilator was the likely next step. I was asked to leave the ICU for doctor’s rounds so I went and had breakfast in the hospital cafe – I liked their warm and frothy cinnamon milk.
Shortly after my return to Leah’s side-room the consultant on duty called me into a separate room. He explained that Leah was critically ill and that they would have to put her on a ventilator to help her breathe. He said that this would entail giving her a general anesthetic & keeping her fully sedated for at least the first 24hrs or maybe more.
He said that because she was so ill she might not even survive the process of being put on the ventilator. He also said that she needed some essential blood products before being ventilated in order to reduce the risk of death and these weren’t available yet so it would be 1-2 hrs before they could go ahead with the procedure. I knew that this unfortunate delay could further increase the threat to her life.
I asked the doctor if I could stay and hold her hand until the general anaesthetic had been administered and she had gone to sleep. He replied that this wasn’t possible as he had equipment to set up and I would be in his way. He continued talking, explaining other aspects of her situation, but I couldn’t concentrate. My stomach was churning. My child was possibly going to die. He was going to put her to sleep and I couldn’t be there to provide reassurance and comfort until the anaesthetic took effect. The last face my child would see would be his face and not mine.
I wanted back in to see Leah, knowing that every moment was precious, but right now my breakfast was threatening to make a reappearance and there was no relative’s toilet in ICU. I excused myself and made my way through the convoluted set of corridors until I reached the public toilets in the hospital foyer.
Thankfully the disabled toilets were available – I didn’t want an audience. I locked the door and gripped the sink as the walls spun round me. I closed my eyes and tried to slow my breathing. This was awful – just awful.
About 20min later I had finally regained my composure and could return to my daughter. I sat and read to her and prayed with her and we listened to her favourite Christian music on her iPad. Due to some difficulty in sourcing the very specific blood products Leah needed, it was a couple of hours before the doctor came and put us out of the room. During this time of waiting, Leah’s oxygen levels continued dropping and the machine that was monitoring her stats was frequently alarming. I wondered at one stage if Leah was going to live long enough to even go on the ventilator.
The Bible says in Ecclesiastes 3:2“There is a time to be born and a time to die” and thankfully this was not Leah’s time to die.
On Monday 13th January Leah’s oxygen levels were again dropping and she was again finding breathing difficult although this time round she was already on a ventilator and she was awake.
Thankfully a different consultant was on duty – one who didn’t mind me being with my child & giving her comfort while he worked through the crisis. He tried many different approaches to help her with her breathing difficulties until the only option left was to fully anaesthetise her for the last time. While all of this was happening I comforted her by holding her hand and stroking her head. The last face that Leah saw before going to sleep was mine and it was a face so filled with love for my daughter.
Leah remained fully anaesthetised until she was transferred to the N.I. Children’s Hospice on Thursday 16th January to spend her final moments in peace and dignity surrounded by the love of our large extended family and a few very close friends.
It’s so hard to explain how in the midst of the terrible sadness of my daughter’s death I still feel an incredible sense of God’s perfect timing.
Another song that Leah and I loved comes to mind, it’s “Sovereign Over Us” by Aaron Keys
“There is strength within the sorrow, There is beauty in our tears
You meet us in our mourning, With a love that casts out fear”
It was the last Thursday in June 2013 and my eldest daughter had just left for America.
By now I was well used to getting calls from withheld numbers so I answered the phone as soon as it rang.
It was Dr C from Bristol Children’s Hospital and I instantly knew by the tone of his voice that something was wrong. He said “We have completed Leah’s gene sequencing and discovered that she has a GATA2 genetic mutation that can cause a familial type of myelodysplasia.”
He went on to explain that the next step would be to test Leah’s brother (the hospital already had samples of his blood suitable for this) to see if he was carrying the gene. If he was found to be carrying the same genetic defect, then his bone marrow could not be used and Leah’s transplant would have to be postponed until a suitable match could be found from the world wide registry.
Dr C said there was several types of GATA2 gene mutations and the type found in Leah’s blood (p.Thr354Met) had never been seen in the UK before. My husband and I also needed gene testing as a matter of urgency.
Depending on which of us tested positive, then they would know who else in the extended family would also need testing. An appointment was made for us to see the geneticist in Belfast on the following Monday.
My world was spinning out of control and I was struggling to breathe.
I thought I already knew how bad this could get.
I had only recently begun sleeping through the night again since Leah’s original diagnosis in April. My concentration and attention span had almost returned to normal.
Now I could once again feel the physical symptoms of shock seep through my body.
Did this mean that more than one of our four children could have a ticking time bomb inside their body?
Would we have more than one child needing a bone marrow transplant?
Would Leah ever make it to transplant?
I needed to rein in these thoughts and focus.
I asked Dr C if he had informed our hospital consultant in Belfast about this latest development and he replied that he had an email ready to send to him but he wanted to discuss it with me first before informing him.
Dr C said that we would know whether our son or ourselves were carrying this genetic defect by the end of the following week.
When we had our first outpatient appointment in Bristol, Dr C had discussed with us some possible genetic implications of Leah’s situation and had put in a referral to the geneticist in Belfast.
I hadn’t really liked the sound of this and had secretly hoped that it would be many months before we found ourselves face to face with a geneticist, listening to potentially more bad news.
Now here it was and I was scared.
I was also relieved, that in the light of what we now knew, that we didn’t have long to wait for further clarification.
Overall, the NHS has been very good to us.
As soon as I got off the phone Leah was by my side “What did he say?”
She never missed a thing.
I had left the room to take the call but she had heard me say hello to Dr C. I tried to take the sting out of the news as I repeated the information to her, I tried very hard not to sound like I was in acute inner turmoil.
I explained about genetics and patterns of inheritance and stressed that it was really important not to speak too freely about this until we knew what we were working with.
I said that I understood that she needed emotional support and advised her to choose a small number of close friends whom she could trust, and to confide in them and get them to pray for and with her.
I really wished that I didn’t have to tell my 15 year old daughter about any of this stuff, but the geneticists appointment on Monday was for her, as well as for my husband and myself.
As always Leah appeared to deal calmly with the information.
On Friday (the next day) our haematology consultant in Belfast City Hospital phoned me. He asked me how I was coping.
I said that I was quite stressed, but that I knew that he and Dr C were excellent doctors and that Leah was in good hands. I also told him that no matter what lay ahead for us as a family, that God would give us strength for the journey. His genuine kindness and concern were very evident.
Saturday morning I was feeling so crushed, defeated and devastated that I just didn’t know how I could possibly keep going.
I halfheartedly opened the STREAMS IN THE DESERT App on my phone that I used every day and read this re Numbers 13:33 – they saw the giants but Caleb and Joshua saw God. Those who doubt say “we can’t do this” but those who believe say “let us go on……for we are well able”
It was the most appropriate word of encouragement I could possibly have received.
One of the constant challenges for me in all of this has been the question “Do I really believe what I say I believe?”
If I truly believe in a God of love then what is there to fear?
Realistically speaking though, one of the big problems is the emotional roller coaster you step onto when a life threatening illness enters your life.
You think you know what life is all about then wham! the roller coaster takes a nose dive and none of your existing strategies or coping mechanisms are anywhere near enough to get you through this new phase in your life.
With each new development along the way you have to learn new coping strategies.
When the roller coaster stops for awhile you might even think that things really aren’t all that bad, but suddenly and with no prior warning the roller coaster car takes off again at breakneck speed and this time the dips are steeper and the rails seem thinner and there’s even a few loop the loops and once again you ask yourself “Am I able for this?”
For me the answer to that question has to be “I am weak but He is strong”
Monday came and the three of us headed out on the by now all too familiar 70 mile journey to Belfast City Hospital.
The geneticist turned out to be pleasant, friendly and easy to talk to.
We had a list of questions.
He told us that GATA2 mutations are inherited in an autosomal dominant way, so if either Horace or I tested positive then the siblings of whichever one of us tested positive would be considered for genetic testing also. If one of our siblings tested positive, then their children could possibly have inherited the genetic defect too. The best case scenario would be for both Horace and I to test negative.
He also said that someone could have the genetic defect and not develop myelodysplasia, although they could develop other disorders associated with GATA2 mutations.
On Friday 5th July @ 10.30am Dr C phoned us with the good news that the Horace, myself and Simon were clear of the GATA2 genetic defect. He said that this meant that Leah’s genetic defect was “de novo” i.e. this was the first time that it had occurred in our family.
I was so relieved to hear this news that I was scarcely capable of coherent conversation. Once again I felt weak and on the point of collapsing, but this time it was for happy reasons.
It was such very welcome news.
The roller coaster car that I was travelling in, glided temporarily into a lay-by.
I just want to clear up some misunderstandings that may arise from some of my previous posts; the fact that none of the samples from Leah’s lungs have ever grown any bugs is not actually good news – a lung infection in a post transplant patient is potentially easier to treat than inflammation.
Inflammation of the lungs is called PNEUMONITIS and I’m told that in Leah’s case it’s likely to be an immune reaction similar to the graft vs host disease that she had in September only way more serious. This type of immune reaction in the lungs is not to be welcomed.
Also, although I complain about the personalities of the doctors, I have no issue whatsoever with their medical expertise. I am very confident that they have my daughter’s best interests at heart and they are very vigilant about checking on her medical condition many times a day.
Even consultants not on duty in ICU that day will pop in just to see how she is doing & there are many in depth discussions amongst the medical team about her treatment plan.
Again, although I bemoan the lack of facilities for parents (or for any visitors in ICU) this is no reflection on the staff. The nurses are all extremely kind and caring and are very good at what they do & they show concern for my well-being as well as for Leah’s.
Nurses & some doctors have made various adjustments in order to make our lives here more bearable, within the confines of hospital policies and procedures.
Any negativity I have expressed about Belfast City Hospital is mainly as a result of Leah & I having spent 14 weeks receiving care at Bristol Children’s Hospital which is totally geared towards meeting the needs of families.
The move from a top class Children’s Hospital with a purpose built adolescent unit, to a very old hospital that is not used to accommodating the needs of young people and their parents has been a huge shock to my system.
However the medical expertise & nursing care here is excellent and I certainly wouldn’t want to give anyone the wrong impression in that respect.
Doc says that there has been no further deterioration in Leah’s medical condition & some tests today show a slight improvement. Docs here have been in contact with her consultant in Bristol to get guidance from there also.
This is the third hospital where Leah has been treated as an inpatient this past year. Every hospital is so different & each one excels in different ways.
The ICU @ BCH is part of an old building and has no facilities for relatives, not even a toilet or shower. All the other patients are elderly & I am usually the only relative here outside designated visiting hours.
I think that initially the staff found my constant presence something of a surprise & I was repeatedly asked “Are you staying??” & my answer didn’t vary.
They have now got used to me being here although I haven’t got used to being regularly asked to leave the room so that the staff can “work” with Leah as in Bristol this never happened even once!
However the standard of nursing care is excellent & they have gone to great lengths to make things more comfortable for me during the night & have found somewhere within the hospital where I can have a shower in the morning – as I’ve said before “kindness transcends physical environment”.
Tonight was to be Leah’s first time attending a big family get together since her bone marrow transplant – she’s day 179 post transplant.
The Dr told us a few weeks ago that her lymphocytes were on the rise & were out of the “danger zone”.
Leah was a bit short of breath when climbing the stairs yesterday but her temperature was normal & she was otherwise well so we decided to wait and mention it at today’s scheduled appointment.
A chest X-ray and subsequent CT scan today revealed a serious chest infection so Leah is now an inpatient in the Cancer Centre at Belfast City Hospital.
The results of her viral screen will be back tomorrow and that will provide a definite diagnosis but the doctor thinks that this is an opportunistic infection i.e. an infection caused by a bacteria or a virus that is not harmful to a healthy person but harms a person whose body’s natural defense against infection is damaged.
If this is the case then Leah hasn’t ‘caught’ this bug from anyone – it is yet another post transplant complication but anyway we should know more tomorrow.