Well, this was never a letter I expected to write… 4 years we’ve shared this curious relationship of ours. 4 years. Who’d have thought it?
Last time I wrote I was incredibly frightened. You had woken up just before Christmas and caused no end of issues. I’m not sure if I was more fearful of the impact of you on my creaking body or the impact further chemotherapy and the associated unrelenting infections were going to have on me.
I struggled so much with the poisoning this time, not just physically, but mentally too. It was almost as if every little essence of Kate was trickling away with each infusion. I don’t mind admitting to you how down I was, especially when I decided enough was enough on chemo front. I didn’t want to work. I didn’t know what to do with myself. I guess I just felt…
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.
As you sit quietly in My Presence, let Me fill your heart and mind with thankfulness. This is the most direct way to achieve a thankful stance. If your mind needs a focal point, gaze at My Love poured out for you on the cross. Remember that nothing in heaven or on earth can separate you from that Love. This remembrance builds a foundation of gratitude in you, a foundation that circumstances cannot shake.
As you go through this day, look for tiny treasures strategically placed along the way. I lovingly go before you and plant little pleasures to brighten your day. Look carefully for them, and pluck them one by one. When you reach the end of the day, you will have gathered a lovely bouquet. Offer it up to Me with a grateful heart. Receive My Peace as you lie down to sleep, with thankful thoughts playing a lullaby in your mind.
‘For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.’
‘You have filled my heart with greater joy than when their grain and new wine abound. I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.’
Those verses in Romans 8 have special meaning for Leah and I.
Rev M. Mc Keown read that passage to us before we went to Bristol for Leah’s treatment.
In the Bone Marrow Transplant Unit and at other difficult times during Leah’s illness we read and reread that passage to remind ourselves that no matter how horrible the side effects of chemo, no matter how awful Leah’s illness was or the complications of her treatment, NOTHING but NOTHING could or would ever separate us from God’s love for us, that He showed to us by sending His Son Jesus to die on the cross for our sins.
Leah’s favourite band, Rend Collective, have a brilliant song based on that passage of Scripture:
Romans 8:31-37 (NIV)
More Than Conquerors
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written: “For your sake we face death all day long;
we are considered as sheep to be slaughtered.”
37 No, in all these things we are more than conquerors through him who loved us.
Having cried most of this past weekend I went to New Horizon last night and I felt such a peace and joy in my heart, mainly for two reasons:
1) I thought of the mighty work that God did in Leah’s heart at New Horizon in 2012 to prepare her and strengthen her for what lay ahead and I was comforted that God sees the bigger picture. One of the things that Leah said when she was diagnosed was – “we have to see the bigger picture“! Here is a text that she sent me from New Horizon in 2012 – Livewire was the Youth Programme that she attended every day:
2) I reflected on how ill Leah was this time last year – she couldn’t smile, speak or even swallow her own saliva and had many other chemo side effects too.
I felt at peace knowing that never again will my child suffer in this way, never again can chemotherapy poison her body and never again will I watch her suffer so horribly.
Leah has received the ultimate healing and is rejoicing with her Saviour in heaven.
I know my contentment won’t last, because another wave of grief will soon crash over me, but last night it almost felt like a little glimpse of heaven.
Then in the Coffee Bar afterwards I met Dr H and it was smiles and hugs all round. Dr H is the specialist in paediatric palliative care who, on Tuesday 14th January 2014, dropped everything to drive from Limavady to Belfast City Hospital to persuade the staff there that it was possible for Leah to be transferred out of ICU to the NI Children’s Hospice for her end of life care – to Dr H I will be forever grateful. I write about Leah’s end of life care here.
“When peace like a river
Attendeth my way
When sorrows like sea billows roll
Whatever my lot
You have taught me to say
It is well
It is well with my soul
But Lord it’s for Thee
For Thy coming we wait
The sky not the grave is our goal
Oh trump of the angel!
Oh voice of the Lord!
Blessed rest of my soul!”
When I got into the lift on the ground floor of Bristol Children’s Hospital it was often crowded, but there wasn’t usually too many left in it by the time it reached the top floor of the hospital.
This 7th floor housed the paediatric oncology unit, the bone marrow transplant unit and the Adolescent Ward.
Sometimes as I looked at those who stayed in the lift till the 7th floor I could just tell by their drooping shoulders that this was a “cancer mom”.
Within minutes we would be exchanging personal information of greater depth than we would normally tell close friends and family.
We were in this together and close bonds were quickly forged.
I remember on one occasion getting into the lift on the ground floor with a total stranger.
As the lift approached the 7th floor I discreetly glanced at her and just knew by her posture and facial expression that her child had cancer.
I introduced myself as another mom.
Her pretty teenage daughter had recently been diagnosed with a rare type of bone cancer & was facing a below knee amputation. They hadn’t yet been able to bring themselves to tell family members about the amputation that would take place within weeks.
My heart ached for their pain.
As parents we were expected to be quite independent in caring for our children & this suited me well.
On the adolescent ward this included stocking up on disposable receptacles to catch bodily fluids, marking them with our child’s name & room number & returning them to the sluice after use.
It used to break my heart when I went into the sluice and saw the many bowls of vomit from all the children and teenagers on chemotherapy.
However in the midst of it all, to brighten things up, a lot of the kids/parents used to “personalise” their disposable vomit bowls & other receptacles before they used them!
Leah and I weren’t very artistic or imaginative in our decorating compared to some of the ones I saw.
It must have made the nurses smile as they saw all the different cartoon drawings & reflected on the strength of human character in the midst of sadness and suffering.
I guess it’s another way of tracing rainbows through the rain.
Within days of Leah’s diagnosis I knew that I wanted professional photos.
I wasn’t really expecting Leah to die but I knew that treatment would drastically alter her appearance.
Chemotherapy causes hair loss and high dose steroids cause hamster cheeks.
I explained to Leah that I wanted some photos of her as she was then, so that she could look at these when she was going through her treatment and use them to remind herself of what she normally looked like and would look like again.
As a family we never did professional photos so I didn’t want to go to some formal studio, I wanted Leah to feel like she was visiting a friend who happened to have a camera.
I knew just the person, she works from home, and she has a very cute baby – Alison Hill
When I talked to Leah about this she said that she didn’t want to go on her own, she wanted her boyfriend Nic to go with her.
So Alison took some photos of her and Nic together and some of each of them on their own.
This was good too as it meant that Leah had some beautiful photos of her and Nic together, to stick on her wall when she was in hospital.
Leah and Nic had a brilliant evening’s fun at Alison’s house while Nic’s Mum and I had a lovely walk in nearby Muff Glen.
I now have 32 absolutely gorgeous professional photos of Leah.
Last week Alison sent me a gift of a 6″x4″ copy of every photo from the photo-shoot which I have put in a little album.
She also sent me two CD ROMs of all the photos – one for me and one for Nic.
These photos are so beautiful and so precious to me now.
This is the emblem of the N.I. Children’s Hospice. Last night was Leah’s High School Formal and every guest was given one of these badges to wear in remembrance of Leah.
Leah had looked forward so much to going to her own school formal and was very excited about the fact that it was on St Valentine’s Day. The design of the badge seems so fitting for the occasion.
The formal Leah went to in November was her boyfriend’s formal. I thought Leah was crazy to even ask the consultant to let her go. We were just back from Bristol and her immunity was very low. Leah had spent months in isolation.
The haematology consultant looked into Leah’s pleading big brown eyes which were filled with tears. I reckon his head said no but his heart said yes – so yes it was.
Being immune suppressed meant that Leah couldn’t go into crowded places to look for a dress but we found some shops that were very quiet during late night opening. The young shop assistant who helped us choose Leah’s dress was very understanding – Leah had a Hickman central line in place and needed a dress that covered this.
Leah’s toe nails and finger nails had been badly affected by her illness and chemotherapy – she had developed Beau’s lines – so we needed to find a foot care specialist and a beautician who could attend to these.
Leah had never worn her wig (supplied by the Little Princess Trust) so we also needed to find someone local who could style this for her nearer the time. There seemed to be so many challenges in getting Cinderella ready for the ball but thankfully God blessed us with friends with talents and with good contacts.
By the week of the formal Leah’s toe nails were beautifully manicured and they remained so till the day she died.
Leah wore false finger nails on the night.
The morning of the formal Leah had a hair appointment at Roco in Derry where we were taken to the VIP suite and served hot chocolate with marshmallows – a treat Leah loved. Ronan, the proprietor, styled her hair (wig) and treated her like a princess.
Next it was lunch, then off to the beauticians for Leah to get her makeup done. The time just seemed to fly – as soon as we got home it was time to help Leah get dressed. Then Nic was arriving and there was flowers and photos, laughter and excitement.
Our daughter was like any other young girl going to her first formal, excited and beautiful. I was like any other proud mammy, taking lots of photos and choosing the best ones to send to friends and family.
The next day was Friday. Leah and I spent every Friday in the Bridgewater Suite of Belfast City Hospital. Bridgewater Suite is where haematology and oncology patients go.
As we arrived for our appointment that day my heart felt so heavy. I realized with crushing sadness that the bit where Leah was “just like any other teenage girl” was gone again. We were back to reality – our reality – a reality where my daughter was very sick.
I thank God for a doctor who made a decision from his heart and not his head and gave our daughter the opportunity to be a princess for a day.
Another stage on this journey that I couldn’t post about while Leah was alive was the harvesting of her eggs from her ovaries in June 2013 – a procedure that was intensive, invasive, exhausting and painful and one that tore at my heart as her mother.
As soon as Leah heard that the chemotherapy cocktail she was to receive would leave her infertile she wanted to know how her fertility could be preserved.
Anyone who knows Leah knows that she adored babies and children. At her request she was referred to the Regional Fertility Clinic in Belfast and we were subsequently told that she was the first woman in Northern Ireland to have her eggs harvested (cryopreservation) on the NHS, as well as one of the youngest in the U.K..
It was a process similar to IVF and Leah had to give herself two hormone injections per day for around 10 days and attend the RFC at the Royal in Belfast on alternate days during this time for scans of her ovaries. This necessitated a 140 mile round trip each visit.
We spent up to 3hrs in the Waiting Room of the Fertility Clinic waiting on blood results on the days we attended, interspersed with trips over to the main hospital for an ice-pop – Leah loved ice cream.
We must have looked a strange sight – a menopausal women and a young teenage girl – surrounded by anxious couples holding hands, desperately hoping that medical intervention would enable them to produce a beautiful little baby.
We never communicated with any of these couples nor they with us – we didn’t belong in their world and they didn’t belong in ours.
We looked for the quietest corner of the waiting area and Leah used this time to study for her GCSE maths module exam on the 11th June (in which she achieved 100%).
I marvelled at Leah’s calmness and composure and her ability to focus.
I remained calm on the outside for her sake, but inside my heart was breaking, because my daughter was having to grow up so fast and deal with so much.
The days that we didn’t have hospital appointments I spent prolonged periods of time reading my Bible and praying and seeking God for the strength to become the Mum that Leah needed me to be.
Eventually on Wednesday 5th June 2013 the day came for Leah’s eggs to be harvested under deep sedation, but the anaesthetist was nervous about Leah’s low blood counts. What should have been a 2 – 3 hr hospital visit turned into an all day stay, with the consultant wanting to admit Leah overnight for observation and Leah insisting on going home.
Leah was taken to the operating theatre in the Maternity Suite. I sat quietly in the Waiting Area, alongside relatives of women having babies.
When the procedure was finished the doctor came out and cheerfully called over to me “Everything went very well.”
As soon as the Dr disappeared, some grandparents sitting nearby beamed at me and cheerfully said “congratulations“. I took a deep breath and replied “It’s not what you think” and explained our situation as best I could. The woman took it not so bad but I could see that the man was really struggling with what he was hearing.
Leah had 22 eggs harvested from her ovaries, 18 of which were described as being of “good quality”. The staff were all amazed at such a good result. We had to sign a form to say that if Leah died then her eggs would be destroyed.
Leah wasn’t allowed to take the stronger pain relief normally used in those circumstances due to her low blood counts. She had quite severe abdominal pain for several days afterwards as her body gradually returned to normal.
The painkillers that she was given made her vomit and caused gastritis. Her greatest ease came from a hot water bottle.
I’m sure very few if any of the people there knew how unwell she was feeling, but it was so important to Leah to be able to honour all her commitments, especially those connected with her Christian faith.
The staff who attended to Leah at the Regional Fertility Clinic were absolutely lovely and the Dr there told me since that she was “so impressed with Leah’s strength and maturity in dealing with her situation“.
I am so proud of Leah but I know that she herself would not want to take the credit for her strength, but would say that the secret of her strength was in her daily walk with God.
During the times this past year when Leah was too weak and ill to lift the Bible to read or to pray she always ensured that I – or Nic, her boyfriend – read to her and prayed with her.
2 Corinthians 12:9 ‘Each time He said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.’
At 1.40pm in the Children’s Hospice surrounded by those she loved & listening to her favourite Christian music, beautiful Leah went home to Jesus very peacefully.
For Leah this means no more chemotherapy, no more physical pain, no more nausea & vomiting, no more oral meds & injections, no more side effects, no more tubes, no more blood tests, scans, X-rays, being poked, prodded, examined, spending endless hours in hospitals, time in isolation, having to worry about every lump, bump & new symptom, etc etc
Leah was ready to meet Jesus, of this, I have no doubt, it’s us who aren’t ready to say goodbye.
For those who knew and loved her, there is the overwhelming sadness of parting.
“For the Lamb at the centre of the throne will be their shepherd;
He will lead them to springs of living water.
And God will wipe away every tear from their eyes.”
Here is another song that has been special for Leah and I on this journey