Lucy Strikes back

By Linda Maples (Lucy’s mum)

I watched Lucy leave for work today – her hair shining in the sun and a smile on her face.  She was going to her job at the Paper Bag Company where she works along with her support worker.  The thing that really struck me today was just how happy Lucy was and how she was living her life to the full now and how I never ever thought that would happen after all the dreadful ups and downs of the 14 years.   

Lucy was aged 6 when she was diagnosed with a brain tumour.  On her 6th birthday just before Christmas, I had noticed that Lucy seemed a bit smaller than her 5th birthday – something I now know was significant, but I just put it down to thinking that Lucy was going to be petite, a bit like my mother in law. Over the next month, we noticed that she seemed to want to go to the toilet more frequently, was incredibly upset by sad music and did not want to be away from me. She also seemed to lose her appetite and I actually started a food diary.  I took her to the doctors and the out of hour’s doctors – all of whom seemed to think that she had a urine infection.  The most significant thing to me was that Lucy appeared to lose her memory and started asking me what day it was.  My husband and I were really alarmed by this and we trudged back and forth to the doctors, sometimes going in on our own to talk about how Lucy appeared to be subtly changing.  She was sent for a blood test and the results showed a high sodium level, but the doctor thought it was a mistake and did not retest her, but merely referred her on for an appointment that would have taken place after her death had I not been persistent.  Lucy was now becoming very sleepy and after another difficult day at school, I took her to my own GP (not the locum I had been dealing with) who took me seriously, he knew I was not a mum who was constantly worrying needlessly, and he admitted Lucy to hospital.

Her sodium level was about 177.  We all normally function with a level of about 130-145.  This meant she was full of salt and they kept asking me, ‘was I feeding Lucy salt?  Was my husband? Was Ben? – our son’.

We spent the night admitted to St John's in Chelmsford and the next day the consultant on duty was actually an endocrinologist.  She sent Lucy for a C T brain scan at Broomfield hospital – about 3 miles away.  We skipped the queue and were seen instantly, but the nurse performing the scan who had previously been happy and chatty could no longer look at us – what was going on?  

We returned to St Johns where I was met, and we were ushered into our own room.  Previously I had hardly been able to get anyone’s attention as to what was happening, and here we were in the small Rug Rats decorated room and someone made me a cup of tea.  The consultant returned and asked when my husband would return from France where he had been on a course.  I advised that he was on his way.  She decided she now wanted to tell me something.

I followed her and the staff nurse Mary around what seemed like a labyrinth of corridors to a small office where she, as a matter of fact, advised me that Lucy had a brain tumour.  She would be leaving the hospital to the care of another centre and they could not confirm at this point if it was to be GOSH or Kings College Hospital.  At St John's they tried to ascertain what tumour it was and in fairness to them tried to talk to me about the roller coaster journey the whole family was about to embark on – and one we have still not got off!

Around 3 days and numerous phone calls later, Lucy was admitted to Kings College Hospital – Lion ward.  Lucy and I were transported down in an ambulance with a blue light – it felt so scary.

We meet a consultant that night – but over the next few days we meet others and Lucy’s was to be Mr Chandler a charismatic and full of hope child brain surgeon.  He wanted Lucy to have an MRI and it was at this point we first found that Lucy was becoming needle phobic, all her cannulas had broken, and she started to become petrified of people who were coming to get blood.  The MRI needed contrast dye – so the cannula was used, and it failed; we started feeling incredibly anxious even before the surgery.  A biopsy was taken and the surgery scheduled for the following Tuesday when the endocrinologist consultant was back from half term; sadly Lucy became incredibly poorly on the Sunday before and so Mr Chandler came in and pulled out her bed from the ward along with the other consultant and they dragged it along the corridor to the lift – the surgery was going to be emergency and it was going to be on that Sunday night.  As Lucy became more poorly I think I remember screaming hysterically for someone to help her and not care about what I looked or sounded like; the relief was instant that they were taking over responsibility for her care and all we wanted to do was sleep.  She was in emergency surgery on the Sunday night and the whole on-call team came out for us – I can never thank those people enough.

It was a very long night.  She was in surgery for about 10 hours.  She had a Teratoma tumour – and we found out later that it was cancerous.  It was located on her pituitary gland which is why her sodium level was so high, it had been crushed...  Her head was cut open to reveal her little soul as they worked so hard to get rid of every bit.  The next day we saw her in ICU, a sight I shall never forget with her bandaged head and little hot pink face and sparkly blue eyes.  We sang to her and she sang back.  We thought all would be good – and to all intents and purposes it is, but how little did we really know about what was in front of us all. Had we known, I think we would all have fainted on the spot!

Lucy’s recovery was fraught – she ended up having her brain drained with an Ommaya valve and then a shunt. The events leading up to this were of crying, screaming, not letting anyone near her and probably feeling the most wretched ever.  After the shunt – we saw Lucy start to get better, to get out of bed and to walk.   But we were now faced with the histology of the tumour and it was described as having a smattering of cancerous cells on the top – there was only one way to hit this and this was hard.  We did not even get home, we were sent off to GOSH to start chemo and radiotherapy. 

It’s a moot point that Nick and I talk about all the time now – did Lucy have cancer? Surely it had gone with the surgery, but we were advised that these things can return fast, you must make sure you have rid her of everything.

So, 8 weeks after our nightmare began, the chemo nightmare started. 

Lucy, we now knew, had lost her pituitary gland and all her hormones which would be replaced by tablets – how hard can that be?  Actually, it turned out to be very hard, especially whilst on treatment and after that when she was totally needle phobic. 

The Chemo was 4 sessions of 5 days and nights.  It was Cisplatin, Etoposide and Ifosphomide– all of which are platinum-based and would blast our little girl's kidneys till they nearly didn’t work and rid her of her hearing rendering her deaf and she now has dual hearing aids, however this strong chemo stuff I think could have killed off anything!

When the chemo started – we didn’t know what chemo was.  It’s basically a load of horrid fluids pumped into Lucy’s blood.  The only good news was that they put in a Hickman line which that meant that Lucy was not having to go through the screaming and horror of someone approaching her to insert a line or take a vial of even more blood.    The Hickman line insertion went off without incident.  Within 4 hours of the Chemo starting Lucy vomited and this was how it was going to be throughout the whole chemo. 

Lucy had become quite small weighing only 14kgs after her surgery, but she was on steroids and was now developing a huge appetite.

GOSH had problems delivering the chemo as Lucy was without hormones and she had diabetes Insipidus.  They had to run vast amounts of fluids with the chemo to protect her bladder and this resulted in difficult and random blood results with her electrolytes.  But they were doing their best and were determined to push on. Lucy appeared to suffer infection after infection which meant that antibiotics were often run resulting now in diarrhoea as well as sickness so the management of her became even more challenging.  These challenges were sometimes just to get a commode and we all became experts at MRSA superbug wipes.

Once I became familiar with the drills that occurred and all the worries like ‘the shunt must be infected’ I started to challenge the decisions to run antibiotics.    It was clear before a ‘chemo sick’ her temperature raised just a tad – so the specialist registrar agreed to take the temperature 3 more times in the next hour to see if it really was inflated or not.

We returned home after chemo 1 and the surgery – so we had been away initially for around 3 months.  Lucy was now refusing to have her blood pressure, temperature taken and refusing all tablets.  Amazingly a few days in her own bed saw our amazing little girl allow these things to happen.

The chemo was an isolating time for me as her mum.  It was not the sort of ward where visitors were welcomed for fear of infection and equally all these young children with no hair and being so ill were a difficult sight for most of us.  On the first occasion of visiting Lion Ward at GOSH – I had collapsed weeping into another room.  Talking to other parents made me realise this was kid hell and you and your child are booked here for weeks.  The parent’s kitchen walls could speak desperate stories of death and pain.  I wept for ages in there, but so did everyone else. 

During the chemo the play specialist from UCLH came over, this lady - Rhonda was charged with getting my 6-year-old daughter through the process of making a mask for her radiotherapy and getting her through it every day without her needing to have a general anaesthetic to stay still.  No one will ever know the super efforts, Lucy, Nick and I put in floating between the hospitals to have a whole face and head mask made – it was pure hell on earth putting it on a little girl who actually didn’t even feel like living let alone posing for a plastic statue of her head to be made.

In the midst of all this, Lucy was taking stacks of tablets a day, one day it was 34 in total and she was only 6 years old!

On the day they tested the mask, they had to stage her head and she screamed and wept so bitterly that eventually the mask was put on and Lucy slept blissfully exhausted of what the test was.

The chemo finished – ‘each day, you do is a day you don’t have to do again’, my brother reminded me –  Lucy was really poorly, and the bloods did not always come back up to the right levels quickly enough.  Her kidneys were shot too.  They used GCSF to artificially build up the bloods – ‘are there any side effects?’ I asked the SPR – ‘yes’ she said, ‘Leukaemia’!

Eventually, the radiotherapy started, Lucy's appointment was for first thing in the morning. When she first started, the machines had to be staged for the 3 bursts and Lucy hung on to a huge bandage that I hung on to the other side of.   This proved reasonably perilous, so the cameras and sound equipment were set up and we talked to her.  She became quite ill in the midst of the treatment, we were all exhausted, so Lucy and I stayed in hospital for a few days for her bloods to stabilise.  I slept in a chair for 5 days (I was used to this by now) and Lucy dozed most of the day with feeling generally rubbish.

The day the Radiotherapy finished was heaven – it was ‘Think Pink’ day.  Tigger the receptionist dyed his hair pink, we all wore pink, the machines were decorated pink, pink cake was served – it was a celebration.

We thought that from now on we would be onwards and upwards, but sadly Lucy went into a Somnolence syndrome over the next few weeks and months.  She then tripped down the stairs and broke her leg!  I knew it was bad when it happened, and our local hospital rose to the occasion as the double doors of A & E were opened and Lucy ushered to the front.  A bald, ill, neutropenic little girl who now had a fractured leg.  The Consultant was kind and sympathetic to us.  An emergency call to GOSH endocrine team was made and for the first (and last time ever) I got through to wonderful Shirley who told them exactly what to do.  The Consultant took my phone from me as he was talked through by this lovely lady.

It was a desperate wait to see if we would return to GOSH again or not – fortunately, it was not a spiral fracture and surgery was not required, however, a few days in Broomfield was required.

By November, Lucy’s birthday, we were all on our knees.  I couldn’t carry Lucy downstairs in the morning with her plaster on, so we all became a bit fraught and sad.  When the plaster came off, it was murderous for Lucy to attempt to walk.

Eventually, it happened, it took until the summer of 2005 for Lucy to really smile and be happy.

This was the roller coaster changing track, still as bad, but different.

Little periods of calm and then complete hassle and stress.  I could barely answer the phone to the school anymore, as I just couldn’t take any more problems; I imagine it was pretty hellish for Lucy.

School was hard for Lucy, by now she had gained weight and due to her condition, it was hard for others to understand – particularly as schools keep peoples conditions private.  In this case, the more that knew or could understand the better.  The introduction of certain hormones caused Lucy to be sick and an unsympathetic school secretary one day made me cry.

Lucy had to have hearing aids fitted.   When she started at Secondary school the system was that she had a microphone that had to be returned to the main office each night.  Lucy’s memory was not good, and she had not a cat's hell in chance of knowing where that office was.  Her locker was never used either, she never ever remembered where it was!

Lucy had an excellent statement created for her by the Junior School and in fairness, the Senior school gave Lucy lots of help and understanding too.

However by the time she started her GSCE’s – the ongoing coursework and exams would really work for her and her memory problem, but sadly, the system changed the year she sat her GCSE’s.  In order to get her help, the Headmaster pulled in the local MP who also wrote letters to exam boards to make requests for Lucy to have more time and a helper. The upshot is that she achieved what she needed, but often, still now things get forgotten.   I was relieved the exams were over as I revised and helped her till I think I could have sat the exams.  I think I could have achieved an A at Maths!  The psychologists marvelled at Lucy’s ability to cope in a mainstream school – it was her resilience that got her through.

Lucy’s appetite had changed too, she was supposed to be on a dose of hydrocortisone that was a replacement to the body, but the reality was she was often very hungry; it’s difficult to replicate the physiology of the body with tablets, especially a growing teenager.  It created a few issues and weight was just one of another thing on our list of things to manage as well.

Lucy went to college where the support was not nearly as close as it was at School: she was having her first taste of being a 16-year-old with a bit more freedom and choice and this culminated in a time of real intense unhappiness for Lucy.  She started a work experience with a place to help the disabled, but it was a disaster as Lucy couldn’t remember how to get there each day – merciful black humour saw her through what could have been a dangerous time.  The walking to and from the college was causing a massive problem and the whole course meant Lucy was so miserable.  This manifested itself in some ways that I find hard to comprehend.  The long and short of it was that we had to get Social Services involved.

We were put in touch with the CAHMS team in Chelmsford and we met Dr Lyder.  We visited her a couple of times as a family and we spoke to her individually.  She immediately saw that we needed practical help locally and that we were on our knees with Lucy’s behaviour.  Dr Lyder decided to offer no emotional support, but she decided to ‘sort this out’ by gathering together the newly acquired social worker, the special needs people at the college and various other healthcare professionals and completely facilitated getting an action plan and help for us.  She provided her offices at the site for meetings, she facilitated them and summarised them.  She made sure Lucy got the help she needed and indirectly she did for us as a family.  She continued this help until a clear action and an EHCP was organised.  She endorsed our pleas for practical help and indirectly helped the other healthcare and education professionals involved.  This took 5 months, but she completely saw with fresh eyes the issues and she tackled them for us.

After another spell at College on an employability course, Lucy by then had the assistance of a support worker who worked with her from the moment that she stepped out the house, to when they returned.   The effect was monumental.  Lucy had someone to relate to and we saw her confidence grow and grow.  When she finished college, we thought that Lucy would not have her support worker any more, but Essex kept her on when she won a place on the Princes Trust scheme with Marks and Spencer.  Lucy’s confidence soared.

After the Princes Trust, Lucy obtained some other work locally, she had a few false starts (see my other blog) but now she works 1 day a week at the Chelmsford Paper bag Co and hopefully this is to go to 2.  She also works at a coffee grinding Company one day a week and she also does work experience and volunteering as a floristry assistant at the Agricultural College for 2 days a week.  She also has a boyfriend and is in a happy great place and we as a family are too.

What is clear is that we are in the midst of another roller coaster change, but we are enjoying every single minute of seeing our daughter thriving and also seeing us work together as a family. It’s a simple priceless pleasure.  We admire hugely her grit, determination and sheer ability to try just so hard with things.  She is a resilient person, but this is the stuff that makes the tough get tougher.