Leah Is My Sister

I was going through my 11 year old daughter’s paper work from her past school year today and I found this. I asked her permission to publish it on my blog.

I also came across several instances where she had to write about her family. In each instance she included Leah and said that she had three siblings. I thought that all of that was so beautiful and I felt so proud of her.

Adults have told me of instances where children they knew had died years ago and their names were no longer mentioned. I’m so glad that our youngest is comfortable talking and writing about her sister who loved her so very much.

I also know from talking to other people, that in years gone by, children were shielded and “protected” from the so-called unpleasant realities of life. This was sometimes done by sending children away to stay with a relative when there was serious illness or death in the house.

Some adults who experienced this as children have told me that they found being excluded from what was happening, a hugely traumatic experience, as they were denied the opportunity of being able to process what was happening and of being able to say goodbye to their loved one. They then found it extremely difficult to work their way through the stages of grief and it compounded their distress.

I never knew that our story was going to end like this and I certainly didn’t have any time to work out a “game plan” for the best way to do things. However, a combination of divine inspiration and mother’s intuition, led me to involve all of our children in Leah’s journey as much as possible.

When we received that first phone call with Leah’s diagnosis on April 19th 2013, the consultant in Belfast suggested “tissue typing” our other two teenage children but not our youngest, who was only nine at the time. I immediate disagreed with him and told him “you can’t make a difference in our children“.

When I got off the phone and discussed it with our youngest, she demonstrated a mature understanding of the situation and said that she wanted to be part of whatever was needed to save Leah’s life.

Our youngest getting blood taken to see if she was eligible to donate her bone marrow to Leah in April 2013

She also accompanied Leah on one of her appointments to the Sperrin Oncology/Haematology Unit in Altnagelvin Hospital in early July, past the sign that reads “No Children Allowed.” Technically speaking Leah was also still a child herself.

In early June when I received a telephone call with a summons to Bristol for an Outpatients Appointment for Leah and Simon, I instinctively asked on the phone if we could bring our youngest with us. I was told that it would be no problem, as there would be a Play Therapist there to keep her amused.

It was so important for her to see firsthand what a lovely “child friendly” hospital that Leah would be having her treatment in. The lively presence of our youngest on this trip, lifted all of our spirits too, as she was the only one who hadn’t sat through a depressing discussion of Leah’s diagnosis and prognosis.

On the 21st July 2013, our youngest flew to Bristol with Leah and me. On Monday morning the 22nd July, our youngest said goodbye to Leah and me at the door of the Bone Marrow Transplant Unit. It was only meant to be a temporary goodbye, as Leah expected to just get a test dose of chemotherapy and be back out again within hours. However she very quickly developed severe septicaemia and became very seriously ill.

A friend looked after her and took her Gromiteering.

Our youngest next saw her sister at the end of August. Leah was an inpatient on the Adolescent Ward by then, but she was allowed out to Sam’s House, the Clic Sargent Hostel, for a few hours each day.

The first day, Leah and her younger sister had great fun together, using the recreational facilities at Sam’s House. By the last day Leah was starting to become unwell and she had a lot less energy.

Our youngest and her dad visited again in October, when Leah was very unwell. Leah was overjoyed to see them both. She wasn’t well enough to leave the hospital, but they did girlie things together in Leah’s hospital room, like painting each other’s nails. Our youngest also helped me to shop for treats for Leah, while her Dad kept Leah company.

Once Leah and I finally got home in November, Leah and her younger sister became inseparable. Every day when she got off the school bus, she headed straight for Leah’s bedroom and there she remained until I chased her off to bed.

One weekend, for a special treat, our youngest was allowed to have a sleepover with Leah. Leah’s immune system was very weak, so I was of course very particular about ensuring that her younger sister adhered to strict standards of hygiene.

The last ever photo taken of Leah and her younger sister together on the 20th December 2013.

On Leah’s last evening at home, Thursday 26th December 2013, Leah cooked a cheese omelette for herself and her younger sister. Then they played together on Leah’s new WiiU. Their laughter rang out through the house.

I write here about how Leah pleaded in ICU for younger sister to be allowed in to visit her. I still feel sad about that.

A few months after Leah died, her younger sister was given the opportunity of attending an Art Therapy group for children dealing with loss, at the ETHOS Family Support Hub in Shantallow.

She doesn’t like talking about her feelings, but she loves arts and crafts.

Attending this group seemed to help her to find a way of expressing her love for her sister through arts and crafts. After attending this group, she started printing off lots of photos of her sister and making up collages of these photos for her bedroom walls.

I’m glad that she’s found a way of expressing herself that she feels comfortable with.

Onwards and Upwards

The August Bank Holiday weekend last year was very special. On the Friday Leah was transferred from the Bone Marrow Transplant Unit to the beautiful purpose built Adolescent Ward in Bristol Children’s Hospital. Leah had spent five long hard weeks in isolation. She now had a lovely single ensuite room on the adolescent ward.

Although Leah wasn’t allowed to mix with the other patients, she could move about the ward and use any of the facilities when the other patients weren’t using them. She would now be allowed unrestricted visiting, so her sisters could plan a trip over from Ireland. In the Transplant Unit the only visitors allowed were myself, her daddy and her boyfriend.

Emma B. from Limavady and her boyfriend Nic were there to help us move. Nic’s mum Kerry was waiting to welcome Leah to the world outside BMT. Although Leah was still ill and weak, we were all so happy and so excited. We felt that the worst was behind us and now it was onwards and upwards.

Leah’s own consultant, Dr C who we adored, was on call the whole weekend. This was a real treat. Doctors visits over the weekend were more leisurely, with plenty of time for conversation. On one of these visits, Dr C was examining the palm of Leah’s hand, looking for signs of GVHD, when he said very seriously “I see a tall dark handsome young man in your life.” He was of course referring to Nic and we all had a giggle. Everyone was so upbeat.

A few times over the weekend Leah and I went exploring our new accommodation. Leah was very weak and tired easily. She wasn’t yet up to a game of air hockey.

We had a laugh when we discovered that the ward juke box had quite a collection of Irish rebel songs and we sat trying them out.

Leah’s appetite was still poor and she was prone to vomiting. She was still being fed directly into her central line via TPN. However on the Bank Holiday Monday her TPN ran out and there was nobody available in Pharmacy to make up more. Dr C shocked me by telling us that we could go and spend the afternoon and night in our room at SAMs House, the Clic Sargent family hostel.

Leah was so pleased that I couldn’t show how I really felt – scared. Even though I’m a nurse and our room in SAMs House had a phone with a direct line to the hospital, I was worried that my daughter was too ill to be left in my care. I didn’t tell her how I felt – she didn’t need to know.

We were dispatched in a taxi with several bottles of high calorie, lactose free, Fortijuice food supplement drink, that Leah had no intentions of consuming. All she wanted was her mummy’s home cooking.

This presented another dilemma for me, as in order to buy food, I would need to leave Leah on her own for approximately 40 minutes. So, with my heart in my mouth, I walked as fast as I could to the local Co-op and bought the fixings for Leah’s favourite dish – chicken fried rice. She could only eat a small quantity, but she said that it was the nicest meal she had ever tasted.

She had a lot of tablets to take at bedtime:

I tucked her into bed that night, kissed her and told her I loved her. She slept soundly. For the first time in five weeks she wasn’t connected to any drips and wasn’t being woken by nurses coming to check her vital signs.

Me – well I must have seen every hour on the clock! I had become so used to the beeping machines, the lights, the hustle and bustle of the hospital, that I couldn’t cope with the silence and the darkness. It was almost like bringing a newborn baby home from the hospital – I had to restrain myself from getting up periodically to check that Leah was still breathing. All the while I was berating myself for feeling like this and thinking how ridiculous I was being.

We returned to the hospital in the morning and resumed inpatient status. That one night outside the hospital had given Leah such a boost to her morale and helped her to glimpse the light at the end of the tunnel.

Thanks for the Bone Marrow bro!

On Monday night 22nd July ’13 Horace and Simon flew into Bristol. At 8am Tuesday morning they reported to Oncology Day Beds at Bristol Children’s Hospital with Miriam in tow.

Simon needed blood tests and to be seen and examined by various doctors including a very good looking anaesthetic registrar from Newport – he provided an alternative and less depressing topic of conversation for us mummies for a few minutes after he left the room!
Horace went up to stay with Leah in the transplant unit and I came down to stay with Simon.

Simon went to theatre in the afternoon to have his bone marrow harvested from his hip bone under general anaesthetic. Simon was very good natured about everything and he never complained at all.

When I had said goodbye to Simon in theatre the nurse asked if I was upset and I said no, because I couldn’t begin to explain that I was much too upset to risk giving way to any emotion whatsoever. I felt that I had to keep a tight rein on my emotions lest they become like runaway horses and leave me completely undone.

When Simon returned from theatre he was transferred to their lovely purpose built Adolescent Ward. He was very drowsy but managed a smile whenever anyone spoke to him. The staff informed me that they were very pleased with the quality and quantity of the bone marrow harvested – I was so happy and relieved. This would now be frozen until Leah was ready to receive it.

In the meantime Leah was lying ill in the transplant unit with septicaemia. Around tea time when I had satisfied myself that Simon would be ok, I returned to Leah just in time to witness her having another rigor caused by her high temperatures. I called a nurse who immediately administered pethidine.

Around 10pm Simon managed tea and toast. He was discharged back to “SAMs House” in a taxi along with Horace and Miriam around 11pm. I think Simon took paracetamol at some stage but he didn’t complain much.

On Wednesday evening Horace and Simon flew home and my niece arrived from London to look after Miriam. On Thursday Miriam went to stay with my brother and his family in Cambridge for a week and then travelled back to Ireland with them.

Today I discovered this song on my iPad playlist and it brought me comfort:

SELAH – PART THE WATERS / I NEED THEE EVERY HOUR 

When I think I’m going under, part the waters, Lord
When I feel the waves around me, calm the sea
When I cry for help, oh, hear me
Lord and hold out Your hand
Touch my life
Still the raging storm in me

People who made us smile :)

During our long 14 weeks in Bristol there were various people who came to Leah’s single isolation room during the day and made her smile, especially on the amazing purpose built Adolescent Ward.

There were so many lovely nurses and a ‘ward housekeeper’ who wore a yellow top – the colour of sunshine – she was a ray of sunshine in our lives. The staff who cleaned our room and served Leah’s meals always brightened up our day too.

Then there were the hospital teachers, they quickly became very special friends and we both looked forward to their daily visits.

The daily doctors rounds also brought us visits from lovely people who had become good friends and who took the time to listen and to reassure. Nothing was ever too much trouble.

Even though we longed to return to N.I. it was terribly hard to say goodbye to the other families and the staff when it was time to leave Bristol, we had formed so many close relationships.

There was perhaps one person more than any other who helped to break up the monotony and boredom of prolonged hospitalisation and isolation for Leah – Sue the Play Assistant. Sue came regularly to Leah’s room with a supply of craft materials for Leah and ideas on how to use them.

Leah was immune suppressed so everything had to be new and unused. We were there a long time so Sue needed lots of ideas for Leah. However, even when we were staying in “Sam’s House” and attending the hospital as a Day Patient, Sue continued to motivate Leah with a supply of suitable materials and ideas.

The Wallace and Gromit Charity supports Bristol Children’s Hospital so there is a lot of Wallace and Gromit paraphernalia around the hospital which resulted in Leah and I both developing an immense affection for Gromit.

Sue provided a T-shirt and a template and Leah made herself a Gromit T-shirt – I’m sure Leah didn’t intend me to publish this photo of her sporting a face-mask but it’s the only one I have of her modelling her Gromit T-shirt. It was taken in our room in “Sam’s House” – it doesn’t look very tidy, does it?

Leah decorated a little wooden bird house which she hung in the garden of “Sam’s House” before she left. Other craft items made by Leah were given as gifts to friends.

Before we left Bristol Leah took to knitting scarves for her teddies with wool and needles provided by Sue.

The NHS gets such bad press sometimes but Leah and I had so many positive experiences of the care she received both in Bristol and in Northern Ireland.

“I think she’s relapsing and will need a second transplant”

One Friday in October 2013, as I walked past Dr C at the Nurses Station on the Adolescent Ward in Bristol, he looked at me and said in a serious tone “I think you should know that Leah’s platelets have been dropping recently and I’m worried“.

I blinked and swallowed as he continued “I think she’s relapsing and will need a second transplant”.

In a low but steady voice I asked him what the immediate plan was.

He said they would monitor her blood counts over the weekend and if her platelets kept dropping she would have a bone marrow biopsy under general anaesthetic the following Wednesday.

We agreed that the possibility of relapse should not be shared with Leah unless it was definite.

At that time Leah was battling another complication of transplant and was feeling very unwell and discouraged.

By now I’d had plenty practice at being upbeat in front of Leah while inside my heart was breaking.

I went back to her room and acted like nothing had happened.

Like all haematology patients Leah had her blood tested every day, but her blood counts had been really good for a few weeks so we’d stopped asking for her blood results.

Over the weekend I made excuses to slip out of Leah’s room so I could find out from the nurses what her platelet count was.

Sure enough, it continued dropping.

Leah’s original transplant had been because of myelodysplasia with monosomy 7 – Dr C had warned us that this can relapse quite quickly after transplant and the first sign of relapse can be when a normal platelet count starts to steadily decrease.

There was no escaping the facts before me.

Unfortunately I also had another escalating problem – severe toothache.

This had started to niggle in August and if I had been at home I would immediately have made a dental appointment.

But I wasn’t at home – I was in Bristol, and I was a full time carer for my daughter.

I tried to ignore the steadily increasing pain in my mouth that radiated up to my ear, until I could no longer eat, drink, or even function to any reasonable extent.

Leah was told that she was having a routine bone marrow biopsy on Wednesday 16th October because she was almost Day 100 post transplant and all transplant patients have a biopsy around Day 100 – which is true.

Tuesday 15th October my scheduled daily Bible reading in Streams in the Desert was Psalm 51:17

“The sacrifices of God are a broken spirit; a broken and contrite heart, O God, You will not despise.”

At this point I thought

“Lord, I’ve never felt so broken in my entire life.“

I went on to read:

“Those people God uses most to bring glory to Himself are those who are completely broken, for the sacrifice He accepts is a ‘broken and contrite heart’……Those who have been gripped by the power of the Holy Spirit and are used for God’s glory are those who have been broken in their finances, broken in their self-will, broken in their ambitions, ……..and often broken in their health.“

Later that morning I sat in the waiting area of Bristol Dental Hospital with copious hot tears streaming down my face and wondered which was worse – the throbbing pain in my jaw or the unrelenting pain in my heart?

Thankfully I got ease from the dental pain & headed back to the hospital.

In the middle of everything I received a text from a teacher at Leah’s school in Limavady to say that the staff prayer meeting would be especially focussing on Leah that Tuesday.

This was such an encouragement to me as they knew nothing about the extra difficult week we were having but yet they had been moved particularly to focus their prayers on us that week.

Wednesday 16th October was biopsy day.

I got up to read and pray before Leah awoke, as I did every day.

I read these words from Hebrews 12:1

“Let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us”

The reading notes explained

“There are certain things that are not sins themselves but that tend to weigh us down or become distractions and stumbling blocks to our Christian growth. One of the worst of these is the feeling of despair and hopelessness. A heavy heart is indeed a weight that will surely drag us down in our holiness and usefulness”

As I waited on God that morning a peaceful calmness swept over me.

I remembered the words of one of Leah’s and my favourite songs “Never Once” – never once since we had come to Bristol had we ever walked alone, and no matter what the future held, the God who had given us the strength to get this far wasn’t about to abandon us now.

Leah had her biopsy, the rest of the day was uneventful, and we both slept quite well that night.We had been told that we would get the most important part of the biopsy results the next day.

Midday Thursday our TYA Nurse Specialist bounced in to Leah’s room all smiles to say that the doctors were very happy with Leah’s bone marrow biopsy samples and everything was looking good.

Leah and I smiled back but as soon as she left the room I burst into tears.

Leah looked really confused, so I explained through my tears about my conversation with Dr C the previous Friday.

Leah’s 15yr old brain struggled to grasp why I was now in floods of tears in front of her when the news was so good – mummy’s do funny things!

The doctors decided that the problem with Leah’s platelets was a side effect of one the drugs that she was on to treat her graft vs host disease – this medication was reduced and Leah’s platelet count eventually improved.

“Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone“

“Never Once” by Matt Redman

If God sends us over rocky paths, He will provide us with sturdy shoes

Just found this lovely photo of Leah sleeping with Duckie & Gromit in her bed on the Adolescent Ward in Bristol taken 30th August 2013.

Leah had her bone marrow transplant on 1st August ’13 & by the end of August we knew that it was successful & she appeared to be making a good recovery.

At this stage Leah hadn’t developed any of the side effects/complications from her transplant that were to ultimately blight her health.

We were both on a high, thinking that she had come through the worst and that things could only get better.

I have said so often this past year that I would not want to know the future, because God only gives you the grace to cope when you are in the situation – or – in the words of today’s reading in Streams in the Desert –

Each of us may be sure that if God sends us over rocky paths, He will provide us with sturdy shoes.

 He will never send us on any journey without equipping us well.