Child Cancer Awareness Month 2016

Child Cancer Awareness Month 2016

Be Aware

I have been acutely aware since waking up this morning that today is the 1st of September – the start of Childhood Cancer Awareness Month. I wish that I wasn’t Child Cancer Aware – not to the extent that I am now anyway. I wish that I could just roll back my life to a time four years ago when (despite my nursing qualifications) my knowledge of childhood cancer was almost non existent. Yes of course it’s important to be Childhood Cancer Aware but I wish that this was mere ‘head knowledge’ and not ‘heart knowledge’.

My ‘awareness’ of childhood cancer causes me to feel deep sadness and fight back tears every. single. day. The least wee thing can trigger this – a product display in the grocery store, a casual comment from a friend or work colleague, a memory that suddenly pops into my head.

This time three years ago Leah and I were in Bristol Children’s Hospital. The previous week Leah had been transferred out of her isolation cubicle on the Bone Marrow Transplant Unit to a beautiful ensuite room on their amazing purpose built Adolescent Unit. We had also been told the most fantastic news ever, which was that Leah’s bone marrow transplant had been successful and that she was fully engrafted. We were ecstatic. It was now going to be onwards and upwards, or so we thought.

Leah was allowed off the ward for short periods of time, so on the 2nd of September we very cheekily had a sneaky trip to the local Costa – this was strictly forbidden as Leah’s immune system was still very fragile.

Leah at Costa

Sadly our euphoria was short lived, as over the following weeks and months, side effect after side effect from the harsh treatments that she had experienced began to ravage Leah’s body, until finally – five months post transplant – these side effects also claimed her life. The cure proved as destructive as the disease.

Devastatingly, this is the reality of childhood cancer.

 

We Were in a Bubble

We Were in a Bubble

Once Leah went on the higher dose of oral steroids, the MMF and the weekly methotrexate, her GvHD symptoms settled down. She continued as an inpatient with her own room in the hospital by day, but we slept in Sam’s House, the Clic Sargent Hostel at night.

Leah set up a study area in her hospital room and the hospital teachers came to see her every day. In July when Leah had packed to go to Bristol, her entire hand luggage was filled with GCSE revision notes. Leah was adamant that she wasn’t going back a year and would continue with her GCSE studies no matter what.

image

The teachers we mostly saw were M and J. They became good friends, Leah and I both looked forward to their daily visits. They were warm, understanding and very professional. They understood if Leah wasn’t feeling so well and they paced their work accordingly. I will never forget J reading excerpts from An Inspector Calls to Leah in her strong Leeds accent.

image

As time went on, Leah was able to spend more time in SAMs House. She set up a study area in our room there too and diligently set aside time for her studies every day except Sundays.
On the 7th September we got to spend our first weekend in SAMs House. Pharmacy issued a shed load of medication for the occasion.

image

Then, on Monday 14th September, we got even more exciting news – Leah was being discharged to outpatient status. We would live at SAMs House, attend Oncology Day Beds twice a week and if Leah’s medical condition remained stable then in 2 or 3 weeks time we would be given a date to book our flights home.

We decorated our room in SAMs House with all the lovely cards that people had sent us:

image

During the day Leah occupied herself with studying for her GCSEs. There were staff on duty in SAMs House during office hours if she needed anything. The weather was consistently beautiful and I took myself out for a walk most days. I always varied my route so that I got to see different parts of the area around where we were staying.

I found a Cath Kidston store and browsed but didn’t purchase. I alternated between going to the Sainsburys in Clifton or the one on the Queen’s Road. I discovered Wilkinson’s and bought a weighing scales and bun trays so that Leah could bake.

imageimage

I admired the beautiful architecture around the local area.

image

In the evenings, when it was quiet, Leah and I often strolled together in the nearby Royal Fort Gardens.

image

We enjoyed spending time getting to know some of the other families who were staying in SAMs House. It wasn’t all doom and gloom – some of the young (and not so young) people found quite creative outlets for their sense of humour:

image

One of the weekends Leah’s boyfriend Nic came to visit. They were able to enjoy the recreational facilities of SAMs House together.

image

This gave me a couple of hours to myself and I slipped out to spend some time with another mum. She had got the keys to a house for herself and her child to use. He was post transplant and quite unwell. She needed help to get it ready. We spent a couple of hours cleaning all the surfaces with actichlor. It felt good to have a change of environment and we had a laugh together while doing it.

image

The days that Leah attended Oncology Day Beds, we walked down St Michael’s Hill together in the crisp clear September air. I carried the rucksack that she had packed with her school work, ready for a catch up with the hospital teachers. As we walked, we chatted together about anything that caught our eye. Like this cute car.

image

I have a tendency to walk fast, Leah was quite weak and could only walk slowly, so I invariably ended up ahead of her. She would call out “Mummy, slow down!” and I would answer “Leah, we’re going to be late for your appointment.” To which she would quietly reply “Mummy, there’s no benefit to you arriving at my appointment without me, so please slow down.” Then I would laugh, because of course, Leah was right, she was so wise!

On arrival at Oncology Day Beds, Leah was immediately ushered into a single room. This was to protect her from infection. However one day we heard a baby cry. We knew by the sound of the cry that this was a very young baby. Now if there was one thing that Leah and I loved and found utterly irresistible, it was babies!

After a couple of hours of hearing this baby cry on and off, I could resist no longer and went to find this bundle of gorgeousness. Her name was Millie, she wasn’t very old, she had been born with a lot of medical problems and her Mum feared for her little girl’s future. I established that this infant wasn’t carrying any infections and posed no medical risk to my daughter. I got permission from Millie’s Mummy and quickly smuggled Leah into her room and took this precious photograph.

I never found out what became of little Millie.

image

Those few weeks in September were idyllic for me. I felt like we were in a safe protective bubble.

To be honest, I wanted to stay in it.

Onwards and Upwards

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.

imageimage

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.

imageimage

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.

imageimage

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:

image

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.

image

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.

It Was Worse Than Chemotherapy

It Was Worse Than Chemotherapy

It is a recognized fact that very high dose steroids (much higher than the dose that is normally used) can in some people trigger psychiatric problems and sometimes this can happen when the dose is being weaned.

Leah was on massive doses of steroids to treat her GVHD.

At first everything seemed fine.

Then at the end of September we got word that a baby had died suddenly on the transplant unit, three days before he was due for discharge home.

Leah adored children and prayed for each child on the transplant unit individually by name every day. After this baby’s death I noticed Leah’s mood plummeting – she became anxious, agitated, tearful and fixated on getting home.

On the Friday she told the BMT consultant that she wanted to speak to Dr C our senior consultant, as she wanted a date for booking our flights for home. We had been told the week previous that we could go home in 2 or 3 weeks. We were given an appointment with Dr C for Monday – we were staying in SAMs House the Clic Sargent hostel at this time.

Sunday night Leah started passing blood stained urine. During the night she was up every hour to use the toilet. In the morning I knew we should take an overnight bag with us to the hospital but I didn’t dare suggest this – I could tell that Leah was feeling very fragile.

We got to the hospital and Dr C told Leah the news that she didn’t want to hear – she had hemorrhagic cystitis most likely caused by BK polyoma virus in her bladder. This was an opportunistic infection, a complication of her bone marrow transplant. It isn’t one that clears up quickly.

Leah was readmitted to hospital but there was no available beds on the lovely adolescent ward. Instead she was sent to Cubicle 4 on the Bone Marrow Transplant Unit.

This was the room into which Leah was first admitted in July and from which she had very quickly requested an accommodation upgrade at that time.

It was small, pokey, lacked privacy and had no en-suite facilities – there was a commode in what resembled a cupboard in a corner of the room.

Leah was crushed, devastated, bewildered – she couldn’t believe this was happening to her.

Leah’s bladder was very inflamed – she had terrible bladder spasms which triggered some episodes of urinary incontinence as well – an awful experience for a young teenage girl.

She needed to use the toilet (commode) every 20-30 minutes.

Her mental state was in a downward spiral.

She couldn’t be left on her own.

Her distress was palpable.

At night I had to read to her for hours before she was able to fall asleep.

During the day if she saw me reading she would say “Read out loud please Mummy” – she couldn’t bear to be left alone with her thoughts.

On Wednesday the ward staff sent for the CAMHS nurse (Child & Adolescent Mental Health) – she insisted that a room be found for Leah on the Adolescent Ward on the basis of Leah’s mental health needs.

This certainly helped and was a great relief to both of us.

By Thursday Leah had got very little sleep for four nights and was in a bad place both mentally & physically.

It was decided that a bladder catheter should be inserted to drain the urine and enable Leah to get some sleep. This was done & Leah was given sedation.

However the bladder spasms were so severe that her bladder ejected the catheter with the balloon that was designed to keep it in place still fully inflated.

This now left Leah completely incontinent of urine & severely depressed.

She had to be referred to a CAMHS psychiatrist and a paediatric urologist.

She had to wear pull-ups by day and pull-ups and nappies at night as she was on a large volume of intravenous fluids.

Leah felt lower than at any other point in her illness.

There were days when she was allowed off the ward to go to SAMs House for a few hours and she wouldn’t go, because of how awful she felt about being incontinent.

She cried so many tears.

I cried too and I prayed and I hugged her and I held her hand and I snuggled beside her in her bed, but yet I felt powerless to alleviate the despair that was so evident in her eyes as she struggled with these very distressing symptoms.

Leah subsequently told me that having BK polyoma virus in her bladder was the worst part of her whole illness journey, worse than chemotherapy, worse than having her eggs harvested, worse than GVHD, worse than the pain of a collapsed disc, worse than anything.

The paediatric urology doctors were lovely and had great ideas and treatments for restoring bladder control.

Over a period of approximately 10 days things improved considerably.

Leah continued on medication and receiving help as an outpatient after she came home, as she still had some residual bladder weakness, but it was continually improving.

When Leah’s bladder symptoms started to improve, I started getting my daughter back again.

She was being discharged from hospital back to ‘Sam’s House’ & I was dispatched down the town with a list of what to buy as gifts for this one and that one.

Leah, my little planner, organised the packing while I was away shopping – how had we ended up with so much stuff in the hospital with us?

The presents we bought that day were just for the ward staff – we planned on doing home baking for the doctors.

A few nights later Leah produced another list & I was dispatched in the pitch-dark one night through the Royal Fort Gardens to the nearest Sainsbury’s, to buy ingredients for “fifteens” and “malteser squares”.

I have no sense of direction so Leah was amused and not at all surprised, when she heard that I had got my landmarks confused in the dark and added a few extra streets to my journey!

Maybe some of our Bristol friends will continue making “fifteens” in memory of Leah – they seemed truly fascinated with some of our Northern Irish customs such as the “tray bake mentality“!

Image

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

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

image

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

The medical expertise and nursing care here is excellent

The medical expertise and nursing care here is excellent

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.

 

No keeping this girl down!

No keeping this girl down!

Today Leah is medically more or less in the same place as yesterday.
The samples that were taken from her lungs on Thursday and were sent to the laboratory haven’t grown anything, so this confuses the PCP diagnosis a little bit and has led some of the docs to suspect that Leah may have pneumonitis, another complication of transplant.
It’s not one I fully understand but I think it could be a type of GVHD (graft vs host disease) or some other kind of auto immune condition triggered by the transplant process.
I have been told that the only way to prove/disprove the diagnosis would be to do a bronchoscopy and a lavage which at present they are reluctant to do, as Leah is so ill.
In the meantime they will continue treating her for everything that they can think of treating her for, including PCP, and wait to see what happens.
Leah is less sedated today, she’s sucking on a Polly Pineapple ice pop, but typed that she would prefer a coke float – no chance!
She also typed “what about maths exam 10th Jan” and I said “Leah you won’t be doing this exam”.
Then she typed “maybe God wants me to go back a year but maybe I could still have lunch & break with my form class Mr M lets them go down town” – going back a year is something that Leah has fought hard against since her diagnosis, but here she is trying to make the best of her situation – no keeping this girl down