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Tangled Hope

Decisions, decisions, decisions…

“If you obsess over whether you are making the right decision, you are basically assuming that the universe will reward you for one thing and punish you for another. The universe has no fixed agenda. Once you make any decision, it works around that decision. There is no right or wrong, only a series

2021-12-06T16:04:24+00:00April 2nd, 2021|0 Comments

A fork in the road…

You would think we would be used to getting bad news now. You would think we would be slightly hardened to walking into a consultants office and seeing that look in their eye as they tell you something you really don't want to hear. Sadly, following 6 months of weekly Vinblastine to prevent a 'bounce

2021-05-24T18:49:34+00:00March 17th, 2021|0 Comments

A global pandemic & a birthday…

Picture this... It's the year 2020, there is a highly contagious virus sweeping the globe, thousands of people are dying every day, hospitals and healthcare workers across the world are overwhelmed, whole families are being wiped out and the UK Prime Minister has just announced an entire country lockdown. Sounds unbelievable doesn't it!?

2021-05-12T18:33:08+00:00March 24th, 2020|0 Comments

5 years….

It has been 5 years since our daughter was diagnosed with a brain tumour following some issues with her vision. 5 years of non stop hospital appointments. 3 different chemotherapy protocols. Hair loss, sickness, lethargy, infections, leg pain, loss of appetite, diarrhoea AND constipation (her bowels like to keep her on her toes!) Precocious

2021-05-15T15:49:10+00:00January 8th, 2020|0 Comments

Flu Season…

One thing we can never forget, even for one minute, is how quickly Eleanor can go downhill when she catches a bug! She had been looking forward to her matinee show on the 23rd Dec for ages as this was the day her best friend Romilly would be coming to watch her perform, it

2021-05-13T12:26:28+00:00December 31st, 2019|0 Comments

When Christmas comes early!

We have finally had some good MRI scan results! This new drug combination of Bevacizumab and Irinotecan, despite the hideous side effects has actually shrunk Eleanor's tumour, there is a visual improvement in size - in the right direction, and it is also less enhanced (less blood flow to the lesion) ... Oh

2021-05-04T15:22:45+00:00December 22nd, 2019|0 Comments

Stage Life…

So, despite Eleanor going through the most horrific chemo she has faced so far, she has finished 3 weeks of rehearsals and made her debut in the West End at the crucible of London Theatres, The Old Vic. She is having the absolute time of her life and I have to admit

2021-05-04T14:54:19+00:00December 21st, 2019|0 Comments

3rd Line…

There are not enough hateful words in the English language to convey my feelings about this current treatment Eleanor is enduring but if we thought she had it tough before we were wrong and she still has 9 months of this! Before embarking upon any treatment regimen we spend a good hour with

2021-04-30T14:58:42+00:00December 2nd, 2019|0 Comments

Barely time to breathe…

It almost feels like each time we stop and breathe and look forward to some normality something is waiting in the wings to put an immediate stop to everything! We were so excited about Eleanor's upcoming theatre opportunity but sadly cancer doesn't care about you, it doesn't care about the people who love you

2021-04-30T14:18:21+00:00September 2nd, 2019|0 Comments

Opportunity Knocks!

In June we were emailed by a company who run special theatre workshops for visually impaired children about a casting call for a role for a disabled child in a Christmas theatre show in central London. I was skeptical at first, having had zero stage or screen experience I thought we were setting Eleanor

2021-04-30T14:11:55+00:00August 2nd, 2019|0 Comments

Plants with a purpose…

The Madagascar Periwinkle (Catharanthus roseus) This beautiful plant originating from Madagascar gives us two very important cancer fighting drugs; Vincristine and Vinblastine. These Vinca alkaloids are isolated from the leaves of the plant and are crucial in the fight against childhood leukaemia and brain tumours. These alkaloids were found to lower the

2021-05-13T12:22:19+00:00June 3rd, 2019|0 Comments

One door closes…

SHE DID IT! I’m so unbelievably proud of my little family. It’s been a tough year of juggling school, work and numerous hospital appointments but this little face makes it all so worth it. To see her smiling after all she has been through... that is what we fight for!  Thank you everyone

2021-04-30T13:00:07+00:00May 30th, 2019|0 Comments


Being a parent is the most rewarding job but also the most heartbreaking. To be told your child has cancer is just devastating. Your whole world as you knew changes in an instant. Every fear becomes real and you are flung into a world you wish not to be part of. Nothing or no

2021-04-11T22:48:10+00:00January 8th, 2019|0 Comments

Back to School…

I can't quite believe this little one is starting Year 3. She is 7, has two brain tumours, a severe visual impairment due to the location of one of them and is currently on weekly chemotherapy for a year, her second chemotherapy protocol since her brain tumour diagnosis in 2015. She has been fighting

2021-04-30T12:54:56+00:00September 6th, 2018|0 Comments

September is…..

FINALLY! Cancer Research UK are acknowledging September being Childhood Cancer Awareness month. It has taken years and years of hard work from parents of children with cancer as well as bereaved parents to really make CRUK promote this for just one month. Every October their shops turn completely pink for breast cancer awareness, yet

2021-05-13T12:44:57+00:00September 1st, 2018|0 Comments

Tests, timings & organisation….

Now that we have been thrown back into the world of chemotherapy it means that our lives need to become slightly more regimented than we have been used to over the last few years. As this chemotherapy regime is very different to the last we need to make sure that all the cogs in

2021-04-30T12:47:21+00:00June 12th, 2018|0 Comments


We were lucky enough for Eleanor to not only have her port-a-cath surgery at the Royal Marsden but also by the same surgeon who fitted her first port-a-cath. Medics, like everyone in the world come in many flavours and finding a good surgeon who is both great at his job AND personable can be

2021-04-30T12:45:03+00:00May 18th, 2018|0 Comments

Hello chemo our old friend…

A year and nine months chemo free, we should be grateful... Unfortunately Eleanor's last scan has shown her new, smaller lesion is not going to stop growing without a little help... help in the way of another chemotherapy protocol. Second line treatment (in the UK) for this type of brain tumour is a 52

2021-04-30T12:38:17+00:00April 30th, 2018|0 Comments

I know…

I saw this today on a childhood cancer forum and seeing as it’s #worldcancerday I though I would share it.   For all my oncology Mum (and Dad!) friends. This is for us.   Never stop fighting x    

2021-04-30T12:25:38+00:00February 4th, 2018|0 Comments

Support, empathy & awareness…

Right at the very beginning, very soon after Eleanor was diagnosed Tim and I decided to set up a social media profile to document her journey. Initially it was a way to update the countless friends and family who wanted to know how she was in one hit, but swiftly became an excellent way to

2021-04-30T12:20:04+00:00February 1st, 2018|0 Comments

One Step Forward…

Well, she did it. Her first ever MRI without anaesthetic! We are proud beyond words... 45 minutes lying completely still enclosed in a noisy machine with her head wedged tight. I was allowed to sit in there with her and can confirm that even with earplugs that machine is NOISY! Children are given headphones

2021-04-30T12:17:49+00:00January 24th, 2018|0 Comments

3 years later…

3 years ago today I was sat in the window of a paediatric hospital ward looking out over London in a daze. A few hours previously we had been told Eleanor had a brain tumour following an MRI scan. It seems almost surreal that today she was lying in an MRI scanner trying

2021-04-30T15:15:01+00:00January 8th, 2018|0 Comments


The week following the scan is when the scanxiety really kicks in. Over the past two and a half years we have usually not been able to wait for a whole week to see Eleanor's oncologist for results so we ask a nurse to call us with the basic results from the radiologists report.

2021-04-30T15:25:11+00:00October 9th, 2017|0 Comments

Scanxiety – the longest wait…

I think my last post about the anxiety surrounding scans and the subsequent results was over two years ago now, I can be completely honest with you here and say that it really doesn't get any easier. The days running up to the scan itself and the week or so following are usually a

2021-04-30T15:30:14+00:00October 2nd, 2017|0 Comments

A lump in the road…

2 weeks ago I found a lump in my breast. Today, after what has felt like a year, I've been able to put my worries aside as thankfully an ultrasound showed a few cysts and nothing more. Little did I know that the NHS provide a 'one stop' clinic within 2 weeks of a

2021-04-30T15:36:41+00:00February 13th, 2017|0 Comments

730 days & counting…

2 years. They say time flies when you're having fun but apparently it also flies when you're not! Last year I was so aware of the significance of this date, I re-lived everything that happened in my mind over and over again, wondering if there was anything we could have done sooner, scrutinising all

2021-04-30T15:41:30+00:00January 8th, 2017|0 Comments

5 going on 15…

The scary thing about brain tumours is that the list of possible side effects is absolutely huge. If you think about how your brain controls your whole body just a small lesion in any part of your brain can cause catastrophic and sometimes irreversible damage. We already know that eyesight can be severely damaged, but

2021-04-30T15:55:54+00:00January 8th, 2017|0 Comments

A fond farewell…

Portacath removal day! We arrived at St Georges Hospital very early on Monday 12th December. Walking through those brightly lit hallways again was the strangest feeling. We hadn't been back there since we were discharged after Eleanor's diagnosis almost 2 years previously and quite frankly we were both hoping we would never have

2021-04-30T16:25:33+00:00December 12th, 2016|0 Comments


Being told your child has cancer is quite possibly the worst news you can ever imagine, right? Wrong. With a childhood cancer diagnosis there is always hope, hope of a cure, hope of treatment, hope of a future. Not with DIPG. Earlier this year I came across a story of a 9 year old

2021-04-30T16:33:17+00:00August 4th, 2016|0 Comments

Reality check…

Just when you think you are done, just when you think life can start to take on some normality, chemotherapy reminds you who is boss by punching you in the stomach and running off laughing.... F*** you chemotherapy. You might take her hair but you'll never take her smile!

2021-04-30T16:38:02+00:00August 2nd, 2016|0 Comments

End of chapter one…

Today my incredible little girl rang the end of treatment bell at our local hospital after receiving her final infusion of chemotherapy. She has endured 18 months of being poked, prodded and injected with toxic drugs, yet not once has she complained.* *That's a lie, she complains about the nil by mouth procedure

2021-04-30T16:41:49+00:00July 29th, 2016|2 Comments


Today we are stuck in hospital watching poison being pumped into our daughter's body when she should be out enjoying one of her school friends birthday party's. We are running for sick bowls when we should be running in the park. It's a parents worst nightmare come true, but we fight every day with

2021-04-30T19:18:56+00:00June 4th, 2016|0 Comments

Small Victories!

When you are part way along a roller coaster of emotional upheaval and things seem to be steadily going downhill you can find yourself reluctant to celebrate the small victories that pop up at unexpected moments.  I see the positives in most things, I like to enjoy the moments when something good happens, but

2021-04-30T19:22:09+00:00April 11th, 2016|0 Comments

The Purple Gala Ball…

To all our guests... For us, the Purple Gala Ball was a truly magical event and we wanted to say thank you. After such a fantastic night we came back to reality with a bang; the very next day Tim went away with work for 5 days. Eleanor was back at school on the

2021-04-30T19:25:49+00:00February 28th, 2016|0 Comments

An invitation to Parliament…

Thanks to our lovely local MP Tania Mathias, we were all invited for tea and scones at the House of Commons and were given the incredible opportunity to meet the inspirational Lord Chris Holmes. Lord Chris Holmes is Britain’s most successful Paralympic swimmer with a tally of 9 golds, 5 silvers and 1

2021-04-30T19:31:25+00:00February 23rd, 2016|0 Comments


acceptance əkˈsɛpt(ə)ns noun the action of consenting to receive or undertake something offered. is it possible to accept that your child has a potentially life threatening tumour in their brain? Is it possible to accept that due to the location of this tumour their eyesight has been reduced to almost nothing? It

2021-04-30T20:02:44+00:00February 1st, 2016|0 Comments

365 days later…

A year ago today our whole world turned upside down. A year ago today we were told our daughter has a brain tumour. It is 9:30pm on Friday 8th January 2016 and I remember exactly what we were doing this time last year. We were sat around a bed on one of the children's

2021-05-15T15:53:33+00:00January 8th, 2016|0 Comments

Keep your hair on!

Thanks to the wonderful work of the Little Princess Trust and the team at Raoul Wig Makers in Paddington, Eleanor now has a beautiful blonde wig made of real hair and it looks amazing. She has had so much fun flicking it about! A big thank you to everyone, you've made a very

2021-04-30T20:13:59+00:00November 4th, 2015|0 Comments


I haven't written for a while, nothing much has happened to be honest. Eleanor has started school now and has settled really well making some lovely friends, the school is great and her teaching assistants are incredible. She is excited to go in every day and skips out smiling every day. It is such a

2021-04-30T20:38:12+00:00November 3rd, 2015|0 Comments

Hair today…

No sooner had I said "We are amazed that she’s kept the majority of her hair" Eleanor's hair started to fall out. The day I had been dreading since she was diagnosed 9 months ago. At the end of the first ten weeks of treatment her hair began thinning and I thought it was

2021-04-30T20:42:11+00:00September 1st, 2015|0 Comments

What goes up…

We've had a wonderfully busy and fun week of smiles, laughter and endless excitement but as with everything in life, what goes up, must come down, and it unfortunately ended with Eleanor starting her second cycle of chemo in this consolidation phase. The cycle where the new drug Cyclophosphamide was introduced. Unlike what we've

2021-04-30T20:50:16+00:00August 20th, 2015|0 Comments

Bibbidi Bobbidi Boo…

I am so lucky to have some incredible friends around me. Their support and love is endless and I cannot thank them enough. Organised by my lovely friend Louise they all got together to pay for Eleanor to have a trip to the 'Bibbidi Bobbidi Boutique' within Harrods a couple of days after the

2021-04-30T20:54:10+00:00August 13th, 2015|0 Comments


Sometimes through all the dark clouds and rain there is a glimmer of sunshine. Recently, we were extremely lucky to be invited to an exclusive ball in central London, it was all very last minute and was to take place in just under a weeks time on the night of Monday 10th

2021-05-04T13:14:03+00:00August 12th, 2015|0 Comments


Thanks to our wonderful friends we were given the amazing opportunity to go to Ed Sheeran's concert (or gig as Eleanor likes to call it!) at Wembley Stadium on the 12th July. Not only was this an incredible opportunity in itself, we were also extremely lucky to enjoy the concert from a private box.

2021-04-30T21:01:54+00:00August 11th, 2015|0 Comments

Another bump in the road…

Week 25 marked the start of the consolidation phase of Eleanor's chemotherapy. The following 12 months will comprise of around 10 x 6 week cycles whereby she'll have three weeks of weekly treatments followed by a three week break. The schedule changes but the drugs remain the same (Carboplatin and Vincristine) We turned up at the Royal

2021-04-30T21:05:08+00:00July 4th, 2015|0 Comments

Symbol cane or neon sign…

Alongside all of the medical people we have to see at the hospital, Eleanor also receives support at home and nursery from visual impairment specialists, one of which is a mobility teacher who will assist her in learning to move around independently. Eleanor has been given two white canes. One is called a 'Long cane'

2021-04-30T21:08:26+00:00June 30th, 2015|10 Comments

End of induction…

Eleanor's chemotherapy schedule is split into two parts. The first is called 'Induction' which covered the first 24 weeks of her 18 month schedule. This began with 10 straight weeks of weekly chemotherapy, followed by treatments on week 13, 17, 21 and 24. From week 25 (which begins on the 3rd July) we move into

2021-04-30T21:11:12+00:00June 6th, 2015|4 Comments

Time for a little break.

Thanks to the wonderful charity Momentum we were able to take a well earned family break in the New Forest at the end of May. We got to stay in Momentums beautiful cabin in a country park near Milford on Sea and had a fantastic week relaxing, making memories and relaxing some more.

2021-04-30T21:15:14+00:00May 30th, 2015|0 Comments


Thankfully the week following Eleanor's cancelled MRI scan flew by and before we knew it, it was groundhog day and we were running through our pre general anaesthetic checklist and filling Eleanor with as much food as possible before she became nil by mouth in preparation for the rescheduled MRI. Prior to the MRI scan

2021-04-30T21:19:43+00:00May 2nd, 2015|0 Comments

A duck and some beads…

There are some amazing, big charities out there doing some incredible pioneering work, then there are the smaller ones, the unsung heroes. The ones who tend to be overlooked but do something so worthwhile and so meaningful for a child going through such a traumatic experience at such a young age that they need

2021-04-30T21:22:41+00:00April 28th, 2015|1 Comment

Life is a rollercoaster…

After the cancellation of Eleanor's MRI scan we had to wait another month for an appointment to become available. It is impossible for a child of Eleanor's age to keep completely still for an extended period of time - she doesn't even stay still when she's asleep! - so a general anaesthetic is required which means

2021-04-30T21:29:09+00:00April 25th, 2015|0 Comments

Thank you!

Since Eleanor's diagnosis our friends and family have been such an incredible support to us. My female friends from my home town in Hampshire have rallied around and made me feel like I've been in some kind of protective bubble of love - it's almost impossible to feel negative when you have a hoard of

2021-05-01T10:28:10+00:00April 15th, 2015|0 Comments

A little bug and a birthday…

Eleanor decided, a day before her routine MRI scan and two days before her birthday, to show us exactly how quickly children having chemotherapy can get sick and go downhill. On the Saturday she was her usual happy bouncy self and even when she woke on Sunday morning she appeared fine, but as the

2021-05-01T10:31:14+00:00March 25th, 2015|0 Comments

Time flies when you’re having… chemo…

The remainder of January, February and the start of March went by in a blur of appointments. We saw community nurses, health visitors, an endocrinologist, an audiologist, and ophthalmologist, a psychologist, a vision impairment specialist plus Eleanor’s oncologist and many many nurses in both the Royal Marsden and our local shared care hospital. I

2021-05-01T10:34:40+00:00March 14th, 2015|0 Comments

Tests, tears & chemotherapy…

The day began with a huge wake up call. The night shift nurse came by to check Eleanor’s port was working and to take a blood test prior to her chemotherapy treatment which would begin later that day. The line that was inserted into Eleanor’s port, or her ‘wiggle’ as she affectionately refers

2021-05-01T10:39:18+00:00January 16th, 2015|0 Comments

Magic button day!

On the morning of the 15th January, only a week later we made our way to the Royal Marsden Children's unit to prepare for the operation to fit Eleanor’s portacath, and to meet the team at our lead hospital. After a little wait, we had a meeting with Eleanor’s oncologist.  We asked

2021-05-01T10:43:53+00:00January 15th, 2015|0 Comments

And so it begins…

We were soon greeted by a specialist nurse at Eleanor’s recovery bedside, she told us she would be taking us to the ward where we would be staying and that we would be visited the following day by a neurosurgeon who would be able to give us more information. At this point we had

2021-05-01T10:48:26+00:00January 9th, 2015|0 Comments

A trip to Moorfields…

On the 5th January 2015 we took Eleanor to Moorfields paediatric walk in clinic and were quickly assessed by a triage nurse and sent in for a test in another room with another nurse. I remember a doctor sweeping into the room a few minutes after we had entered. He addressed Eleanor, but not

2021-05-04T16:23:04+00:00January 5th, 2015|0 Comments

Look in to my eyes.

My partner Tim and I had been concerned about our daughter Eleanor’s eyesight for a few months.  It started when she began to hold things closer to her face, then she would drop things and feel around for them despite them being right in front of her. We also noticed that she had

2021-04-30T16:51:32+00:00December 18th, 2014|1 Comment
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