My Sock Story

I recently discovered this very interesting site called What’s Your Grief?

When I read this post called Sometimes Socks Are Sad I thought about my own ‘sock story’.

Shortly after Leah was diagnosed we received a very generous financial gift from a very dear family friend called Shirley.

Shirley also had blood cancer and had been through a stem cell transplant. She wasn’t financially well off, but she had a very loving heart. She outlived Leah by approximately six months. She is very much missed by all who knew and loved her, but like Leah, she looked forward to the day when she would meet her Lord and Saviour face to face, the one who loved her most of all.

I suggested to Leah that this money be used to purchase items that she would need during her hospital stay in Bristol. Anyone who knows Leah knows that she just loved shopping in Primark.

On one of our trips to Belfast for one of Leah’s many hospital appointments, she and I headed into the centre of Belfast to their massive Primark store. Leah filled our shopping basket with pyjamas, underwear and soft comfy socks.

Bristol has an amazing flagship Primark Store in the former House of Fraser building.

Early on in our time there I was dispatched to this store to buy Leah more of her favourite socks. She called them “popcorn” socks because their texture felt bubbly like popcorn.

During Leah’s time in the Bone Marrow Transplant Unit in Bristol, she went to theatre three times to have her Hickman Central Line removed and replaced. Leah was very ill and I always found these times very difficult emotionally.

On each of these occasions Leah had to remove all of her jewelry and wear a hospital gown and cap. The only personal item that she was allowed to wear was her socks. She always wore her ‘popcorn’ socks. The lovely paediatric anaesthetists always commented on her socks and told her how pretty they were.

Even though my heart was breaking, I really appreciated the effort they made to notice the ONE thing about my daughter that represented her individuality. It also represented their efforts to engage with us as fellow human beings.

It was a similar story with Leah’s earrings in the weeks that followed. Chemotherapy hair loss, facial hair growth caused by cyclosporine and hamster cheeks from her steroid therapy, had all changed Leah’s appearance. Yet the hospital staff were always careful to notice and comment positively on her earrings.

Leah had a variety of cute earrings from Claire’s Accessories. I so appreciated the efforts made by the staff to notice that one small way in which Leah could still express her personality – so important, especially for a young person.

Then recently I was in Primark here in town. Without thinking, I wandered down the sock aisle. There I saw them, Leah’s favourite “popcorn” socks, in so many pretty colours.

I held my breath, I fought back the tears. I remembered when Leah was so ill in Bristol, that she couldn’t even swallow her own saliva and I had to assist her with all of her personal care. Every day I put clean socks on her feet. Soft, comfy, colourful socks.

What a privilege it was to be able to care for my daughter and show her my love. I thank God for the health and strength that I experienced throughout Leah’s illness, that I was able to care for her 24/7. Even the chronic migraine that has dogged my existence since childhood, took a backseat during those months.

Someone told me today about a mother who could not cope emotionally when her adult daughter was dying of cancer. Throughout her daughter’s three month hospitalisation that preceeded her death, her mother never once visited her, because she couldn’t deal with the situation emotionally. This person said to me “Vicky, you are blessed, because you are so tuned in to your own emotions, that you were always available to Leah, emotionally and in every other way.”

I agreed with her, I am blessed in that way.

I’m not blessed that my daughter took ill and died.

I’m not blessed that my heart is broken.

I am blessed though, that God created within me, the resources that I needed to care for Leah and show her my love, while she was living.

Let me be Singing when the Evening comes.

My baby asked for a shopping trip this week. She’s 11 and has never liked being referred to as “my baby”.

My Mum referred to me as her baby until dementia robbed her of her faculties a few years before her death in 2008. I liked this term of endearment.

Miriam and I both tried on shoes in New Look and then she tried on clothes in Primark.

She looks taller than me, but she isn’t really!

Since Leah was a toddler she absolutely loved shopping and would never have allowed us to go shopping without her.

We still find ways to include her – we went to the gardening section in one of the Pound Shops and Miriam chose some items for Leah’s grave.

On this occasion Miriam chose a solar powered butterfly and a dragonfly. She also picked a shepherds crook (with a butterfly inset), on which we can hang things, like sun catchers.

I was glad when she chose a shepherd’s crook – it reminded me of the the 23rd Psalm and the Good Shepherd.

When the shops had closed up for the night, we headed over to the cemetery to place our purchases on Leah’s grave.

I suppose there was a time when visiting a cemetery in the dark would have seemed like a scary thing to do. Not now though – how could the place where we left the body of our beloved Leah ever seem scary?

We arranged our purchases with the light from the torch on Miriam’s mobile phone. Then we talked about the view and commented on the attractive variety of solar lights/decorations on some of the nearby graves. Surprisingly, it feels quiet and peaceful in the cemetery at night.

The curvy string of lights is the Foyle Bridge across the river in the distance.

After this it was time for the obligatory trip to McDonald’s.

Inwardly I reflected on the fact that it’s two years this past week since our very first visit to Belfast City Hospital.

Two years since we left behind the familiarity of our local hospital and faced all that was new and scary and unfamiliar.

Two years since a doctor we had only just met, told us things about our daughter’s diagnosis and prognosis that no parent ever wants to hear.

His phone call the previous week had told us that Leah needed a bone marrow transplant, but by the time we’d finished our face to face meeting with him, it seemed as if it was actually a miracle that our daughter needed.

For weeks afterwards a little voice inside my head kept saying “This is too much.” and another voice would quickly respond “But He is enough – God will get you through this.”

On Tuesday the 24th April ’13, before we left the house to go to Belfast City Hospital, I posted on my Facebook page, some words from one of Matt Redman’s songs that was so special to Leah and I:

“The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes”

When we arrived home that evening my heart was breaking.

I wrote underneath my earlier Facebook status that if I didn’t have God in my life to help me, I certainly wouldn’t have the strength to still be singing.

The Unthinkable Happens

On Monday 23rd September 2013 the unthinkable happened – little baby A in the Bone Marrow Transplant Unit died unexpectedly, just three days before he was due to be discharged home.

He had been in the unit when Leah was having her transplant. His mum lived locally and left periodically to visit her two other young children who also had medical needs. I used to gaze through the glass at this adorable infant. I had to fight off the almost irresistible urge to enter his cubicle and lift him for a cuddle. My head just about ruled my heart on this one.

I got to know his mum quite well and sometimes Leah was with me when she and I stopped for a chat. Leah and I were devastated on many levels regarding the death of baby A.

We had been told that Leah’s chances of survival were two out of three.

Despite having worked many years in the Health Service and having also worked with young children with life limiting conditions, I had never personally known a child who had died from cancer.

Up until this point, the possibility that Leah, or any child might die, still wasn’t something that I really believed was likely to happen. In my mind, the statistics applied to children I didn’t know, in some far away place like America.

Now, however, everything had changed. The statistics for children who died from complications of bone marrow transplant now had a face and a name. They even had a Mummy, someone I had come to know quite well. Leah and I were heartbroken for this family, but we were also quite unnerved.

Another factor in the equation was that Leah was on high dose steroids and it is recognised that these can cause psychiatric side effects such as depression. After this baby’s death, Leah’s mood started to plummet. She became desperately homesick and pined for her family and friends.

We were given an appointment with our consultant for Monday 30th September to meet with him to agree on a date for booking our flights home. On Sunday night 29th September Leah started passing blood stained urine and I knew that we were in trouble. She was up to the toilet every hour during the night.

On Monday morning I was too scared to tell Leah that we needed to bring our overnight bags with us to the hospital – she was fixated on getting a date for going home.

Leah saw her consultant alright – he told her that her haemorrhagic cystitis was more than likely caused by BK polyoma virus. It’s an opportunistic infection that can occur post transplant and is very nasty and difficult to treat. Leah became very upset when she realised that she was being readmitted to hospital indefinitely.

We spent the whole day in Oncology Day Beds because there was no beds available on the Adolescent Ward. Eventually we were told that the only beds available were on the Bone Marrow Transplant Unit. Leah was given a choice between the room in which baby A had died or the horrible cubicle 4 in which she had started off – cubicle 4 it was. Leah was in a very distressed state.

On Wednesday evening 2nd October ’13 Leah was transferred to a room on the Adolescent Ward. This was a huge relief to us, as her daddy & younger sister (aged 9 years) were booked to visit that weekend and children are not allowed to visit patients on the Transplant Unit, due to the strict infection control regulations.

October ’13 was the month that Leah found the hardest of her entire illness. I write in more detail about some of these struggles in It Was Worse Than Chemotherapy

I actually find it difficult to look at photos of Leah taken that month, knowing what she was going through.

Our youngest daughter’s birthday is on the 25th October. It broke my heart to have to tell my daughter that her Mummy probably wouldn’t be home in Ireland for her 10th birthday. Leah and I had been in Bristol since the 21st July. I had already missed her first day back at school and many other events in her life, that as her Mummy I didn’t want to miss.

So I decided to make the best that I could of our situation. While Horace sat with Leah, she and I set out to have fun in Bristol town centre. First we went to their amazing Primark store. She chose a Snowman jacket.

Then we had a pizza together. We followed that with her first ever trip to Build-A-Bear. When the sales assistant told her to hold the bear’s heart in her hand to make a wish, I could feel the tears sting my eyes. There was so much to wish for.

She called her bear Rainbow – I think it’s a cat actually.

Finally I took her to the Lone Star Candy Bar American sweet shop and gave her £10 to spend – she was ecstatic.

Leah absolutely loved having her younger sister and her dad over for the weekend.

This is what Leah posted on our private Facebook page around that time:

Many people responded and sent us pictures, encouraging words, assurances of prayer and suggestions of songs to listen to. Leah and I spent days reading all of these and listening to each song suggestion. We greatly appreciated everyone’s words of encouragement. This is one of the songs that was sent to us in response to Leah’s plea:

Worn
By Tenth Avenue North

I’m Tired I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world

And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn

I know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn

My prayers are wearing thin
Yeah, I’m worn
Even before the day begins
Yeah, I’m worn
I’ve lost my will to fight
I’m worn
So, heaven come and flood my eyes

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause all that’s dead inside will be reborn

Though I’m worn
Yeah I’m worn

The Bear Hat

People who have lost a loved one often talk about trying to preserve the “smell” of the person who has died. Because Leah was immuno compromised her clothing and bedding had to be laundered frequently.

On her way to the hospital on Friday 27th December ’13 Leah vomited profusely therefore everything she was wearing that day had to be washed. Almost the only item of Leah’s that has survived unwashed is her wee bear hat with ears.

Bristol has the most amazing flagship Primark store and Leah and I managed a few sneaky clandestine visits there – Leah LOVED Primark. We usually went in the evening just before closing when it was really quiet, to reduce the risk to Leah’s very weak immune system.

She carried alcohol gel to cleanse her hands every time she touched something. We went up and down the floors in the lift – always making sure we were in it alone – so that Leah wouldn’t have to touch the rails of the escalators! Such a tightrope that we had to walk between trying to meet her physical needs and her social/emotional needs! Prolonged enforced isolation is incredibly difficult for anyone, but I think it’s especially difficult for adolescents.

On one of these visits Leah bought this hat for herself and also bought a similar one for another teenage girl, who had chemo hair loss, that she had made friends with in Bristol.

When my children were babies I always loved them in hats and suits with ears. This is Leah when she was three weeks old.

 

I keep Leah’s bear hat in my bedroom and every day I press it to my face and inhale deeply.
It brings me comfort to smell Leah’s familiar smell.

A delicate tension

After Leah’s transplant she really felt the cold – she loved to be warm and cosy in this fleece from Primark – Bristol has the most amazing flagship Primark store.

 

Girls just want to have fun.

In many ways Leah’s experience of our 14 weeks in Bristol was quite different to mine.

For starters she spent much of it in isolation – either on the bone marrow transplant unit or in her ensuite room on the beautiful purpose built Adolescent Ward.

Her room was lovely but her world was very small.

My world was much bigger.

When Nic was over visiting Leah, I was “off duty” by day and able to explore Bristol on foot – a very beautiful City.

One day I was heading to Za Za Bazaar for lunch with my sister, when we happened upon a very old church built into the remains of Bristol’s City Walls.

This Church of St John the Baptist was open to the public and we went inside and got chatting to the two volunteers who were manning it that day.

As soon as they heard about Leah they offered to pray with me for her on the spot – it was a very precious moment.

A subsequent visit to google elicited the information that this church was “built in the 14th century as a place for travelers to offer prayers before a journey“.

Another obvious difference between Leah’s experience and mine was that she was often very ill – symptoms of her illness, side-effects of treatment, complications of transplant etc.

Leah had nausea, frequent vomiting, fever, rigors, nose bleeds, mucositis, diarrhea, hemorrhagic cystitis, urgency, frequency, incontinence, insomnia, bone pain, joint pain, muscle pain, skin rashes, tiredness and weakness, though thankfully not all of these occurred simultaneously.

The isolation made Leah very home sick and she pined for friends and family.

I also missed friends and family, but at the same time I benefited greatly from making friends with other parents in a similar situation.

Because Leah had always been treated through the adult services at home I didn’t have any contact with other oncology mums in Ireland.

I made deep and lasting friendships in Bristol with some amazing people. When Leah was subsequently in ICU in Belfast & critically ill, I received beautiful heartfelt messages of support from these parents, in a real outpouring of love.

However the best thing about Bristol for me was that I was completely released from all the other responsibilities and concerns in my life and had only one concern every day when I woke – Leah.

Now that Leah is no longer here, I thank God that for those 14 weeks when I had no distractions, no domestic responsibilities, no housework, nothing other than the care of my beautiful but sick daughter.

In the midst of it all are some very happy memories.

There’s the week in early September when we knew her transplant was successful but the post transplant complications hadn’t yet set in and we had the “sneaky” trip out of hospital to Bristol’s flagship Primark store.

Leah spied the Costa cafe in store and pleaded successfully with me to let her have a drink and a bun – we must have broken every post transplant rule in one fell swoop – I was really panicking, but what could I do – girls just want to have fun!

There was the warm September evenings after the shops were closed when we walked down town from the hospital to see the Gromits and had to get a taxi back because Leah’s legs wouldn’t carry her any further.

When our consultant found out he sternly reprimanded us and said that for her own safety Leah needed to live in self-imposed exile – I knew he meant well so we behaved ourselves after that wee “break-out”!

There were the many good times in SAM’s House spent baking buns & tray bakes & just hanging out with other families.

There’s the beautiful Royal Fort Gardens beside SAMs House where Leah & I regularly walked & sat on a bench to chat or text.

We used to sit really still just to see how close the grey squirrels would come, then Leah would try to photograph them because she thought they were so cute.

At one stage the DVD player in Leah’s hospital room didn’t work so the support worker from the Teenage Cancer Trust brought us a portable DVD player.

We ordered films online that we both liked. 

At night we would snuggle up together in her hospital bed to watch them, while munching through a bag of Galaxy Minstrels.

Then there were the visits from family or friends – these were very eagerly awaited events.

Depending on where we were, most visitors got a guided tour of either SAMs House or the Adolescent Ward, with as much pride as if they were being shown around our own house – it was, after all, our “home” even if only temporary.

On Sundays, if we had stayed overnight in SAMs House, Leah would have a lie on while I went to a brilliant church called Pip n Jay.

When I got back from church we would cook dinner together – usually sirloin steak – I had black pepper sauce and she had gravy. We would have potato croquettes and roast potatoes, vegetables and lots of Yorkshire puddings. Ice-cream was usually on the dessert menu.

Afterwards she washed and I dried. Leah loved her food and when she was well enough to eat, I just wanted everything to be really tasty.

When Leah was in hospital she would send me to Starbucks for a peach and mango frappuccino or to M&S for a particular milkshake we both liked or for a wee tub of Ben & Jerry’s ice cream from Tesco or some frozen yogurt from Sainsbury’s.

I loved the fresh air and exercise and the chance to see around me that came with these shopping excursions.

For our last few weeks in Bristol the post transplant prohibition on takeaway food was lifted so we had treats like Domino’s pizza one day or a Chinese takeaway another.

Because I only had Leah to think about, her wish was well and truly my command, and that, for both of us, was such a blessing.