Mummy They are Coming to Visit Us

By early February 2013 Leah was having weekly blood tests. She had also had her first outpatients appointment at the Sperrin Unit – our local adult Oncology/Haematology Department.

The staff who looked after us there were absolutely lovely. Our consultant there phoned the paediatric haematologist in the Royal Belfast Hospital for Sick Children to discuss Leah’s case.

Then he rang me to say that she had told him that Leah’s blood results weren’t consistent with any nasty bone marrow diseases. I didn’t believe her. I didn’t tell him this of course.

I recorded my fears in my diary and voiced them in my prayers. When I was on my own I cried a lot.

I reminded God that I had always hated the scary rides at the FunFair. I didn’t like adventure or risk taking – I didn’t even particularly like going away on holidays.

I just wanted to live a quiet life with my family, going on picnics, having Sunday lunch together and playing board games.

I also pointed out to God that a lot of the things that were happening to me were far removed from the blueprint that I had designed for my life. I was feeling way out of my depth.

However once Leah was diagnosed on the 19th April 2013 I knew this wasn’t something that I could get through in my own strength, I had to rely on God to get me through this.

One of the things I remember muttering under my breath at various times after Leah was diagnosed was “This is too much but HE is enough.”

So many times along the way since then He has provided for our needs by sending people to minister to us.

We received Leah’s diagnosis via a phone call on a Friday and we all had to go to the City Hospital in Belfast on the following Tuesday.

On the Sunday Leah said that some of her leaders from L.O.S.T. (Limavady Outreach and Service Team) wanted to visit us and wanted to know what time would suit? I replied “Leah, tell them no time suits.”

A while later Leah told me that one of the leaders had messaged her with a specific time and wanted to know if that would suit. I replied again “Leah, tell them that no time suits.”

Leah just looked at me and said “Mummy they are coming to visit us.”

Sure enough, a short while later, three people, two of whom I had never met before, arrived at our house.

They spent some time with Leah and my husband and me, talking about the devastating news that we had just received and the hospital appointment that we were facing that week. Then they prayed with us.

Before leaving, one of them said “Thank you for inviting us.”
I laughed and said “I didn’t invite you.”

Do you know something? Since receiving that awful phone call on the Friday, delivering Leah’s diagnosis, they were the first people who had come to our house to minister to us and pray with us. We really needed them and we really appreciated their visit.

It taught me something too. If I know that somebody is in bother and I feel an urge in my heart to visit that person, then I would rather follow the leading of my heart and take the risk of getting it wrong, than ignore the prompting of my heart and miss an opportunity to minister to somebody in great need.

Have you not googled it?

On Saturday 18th May ’13 Leah was admitted to the Sperrin Haematology/Oncology Adult Ward of our local hospital. She had Febrile Neutropenia and was immediately started on intravenous antibiotics – this condition can be fatal if not treated quickly.

By Sunday morning Leah was feeling much better and was sure that she would be able to sit her two GCSE modules the following day Monday 20th May. However when the consultant came round he said that she would not be allowed out of the hospital to sit her exams. When I queried him on this he replied “Mrs Whyte, this is a life threatening situation, have you not googled it?” I didn’t answer him – I didn’t need google to tell me that my child’s life was in danger. He spoke to the nurse and she reappeared a little while later with a computer printout regarding “febrile neutropenia” – otherwise known as “neutropenic sepsis” and how it could very quickly become fatal it not correctly handled.

I asked Leah what she wanted to do about her exams and she said that she wanted to sit them, so I said “that’s fine, it’s going to happen“. Inwardly I prayed for strength and wisdom. It was a Sunday morning and I didn’t have contact details for any of the staff in Limavady High School. I was also confined to the hospital with Leah as she didn’t like being left on her own and I didn’t like leaving her.

It’s a long story and various good people helped along the way, but eventually around 6pm Sunday evening I got speaking to Mr M, Leah’s Head of Year, a man who was a tower of strength and compassion throughout Leah’s illness journey. He promised to ring the exam board first thing Monday morning. I then informed the ward staff what we were hoping to arrange.

Monday morning the wonderful Mr M phoned to say that he had authorisation from the exam board for Leah to sit her two exams in the hospital that day. An invigilator was on his way from Limavady High School to the hospital in Derry/Londonderry with the exam papers – English Literature and Chemistry. I went to the nurses station to update them. They informed me that Leah wouldn’t be allowed to sit these exams without authorisation from her consultant and he was busy in clinic. There was considerable stress until the consultant could be contacted and brought to the ward to give his permission. Thankfully everything got sorted out.

Leah sat her exams in the ward sister’s office. It was the first time that a patient had ever sat GCSE modules on this ward. In August ’13 when Leah was in the Bone Marrow Transplant Unit in Bristol, Mr M phoned us to say that Leah had got an ‘A’ in both of these exams. I immediately phoned the Sperrin Ward to let them know and to thank them for all of their help – Leah was always very well cared for on this ward.

This photo was taken in hospital at 9.30am on Monday 20th May 2013 while Leah was doing some last minute revision for her exams.

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.