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
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 raise awareness of childhood brain tumours. Social media is so incredibly powerful and can reach places nothing in the past has been capable of.
Eleanor’s route to diagnosis, thankfully for us, was a relatively smooth process but I put that purely down to Tim’s tenacity. Had he not pushed for her to be seen when he did and waited for that GP referral we could have been in a very different place now. We caught her tumour before it potentially caused even more damage. Others are not so lucky. I have read of parents visiting GP’s and even A&E on numerous occasions and just being passed from pillar to post with no one taking their concerns seriously, before it is too late.
Eleanor presented with symptoms no one would have considered dangerous! Poor eyesight runs in my family, I wore glasses from a really early age and I had never known my Mum without her spectacles. Naturally, I assumed Eleanor only needed glasses when she started to struggle to see things; things she could before. Tim was, thankfully, more concerned. Now I look back, with the insightful accuracy of hindsight, the changes were more rapid than could ever be ‘normal’.
A frustration persisted since her diagnosis. There was a period between her initial loss of vision and our horrific trip to Moorfields, when even if we had considered something as sinister as a brain tumour, the primary, national brain tumour charity’s awareness campaign did not list, ‘rapid or sudden loss of vision’ as a symptom. Not in their under 5 category.
We made it an aim to help raise awareness with #Eleanorsvoice, and find a way to get this symptom added to the Brain Tumour Charity’s ‘Headsmart‘ campaign. Speaking with other parents and to medical practitioners, we found out that initial detection via optical related issues was reasonably common. Not the most common but who decides the threshold?
If it were added, maybe, when presented with this sign, a parent or a health professional would ask the right question of the right person sooner; lead to the proper referral earlier; perhaps catch it a day, a week, a month, or a year before another symptom shows.
We passionately believed the list needed to be changed.
It took over 2 years of hard work but eventually in 2017 the Brain Tumour Charity added ‘Suspected loss of vision and loss of vision’ to all three of their age categories!
8 months in and due to a celebrity ball we were invited to by a children’s cancer charity, Eleanor’s social media profile rocketed and more and more people were following her journey. Because of this Eleanor has had some incredible experiences, met some wonderful people and our awareness campaign has spread far and wide. More and more people now know that children get brain tumours and what the symptoms may be. We have had many messages of support, people thanking us for putting our story out there to potentially help others.
We have never actively asked for people to raise money for Eleanor or our family, in circumstances like our own people do feel compelled to help, and as they don’t have the miracle cure for cancer, they run marathons, or throw themselves out of a planes for sponsorship money which they organise themselves and we may promote to help them reach their goals. Of course we are never going to turn down these generous gifts, anything that will help enrich Eleanor’s life we will grab with both hands but our main aim always has and always will be to raise awareness of the symptoms of paediatric brain tumours.
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 and the option to listen to music or watch films to keep them calm during the scan. This also provides a way for the radiologist to talk to them to check they are ok and to tell them whats happening. Eleanor chose to listen to classical music during her scan… her reason being that any other music would make her want to sing and dance!
We are always proud of Eleanor, she is an incredible, brave little girl and this has made future scans so much easier for all of us.
Just the wait for results now. Fingers crossed!
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 out the possibility of having future scans with no anaesthetic.
Our darling girl has had to grow up so fast in the last 3 years – a visually impaired 6 year old in an incredibly visual world – and has been through more than any child should.
The sad fact is that we are no further towards a positive outcome. We now know there is more than one tumour and still unsure what will show in her full body scan, which we anxiously await the date of.
It has been and continues to be a long, frightening journey and I want to thank our wonderful family and friends for sticking by us through it all. Text messages, cups of tea and hugs at just the right time. Thank you from the bottom of my heart❣ x
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. Since our journey began each scan has given us a stable result but since treatment stopped there have been some changes. This time we chose to wait until we could see Eleanor’s oncologist so he had been given some time to look over the scans and hopefully give us a more detailed explanation of the results….
The last scan showed a small amount of growth so I wasn’t expecting good news. It made the week drag and every minute felt like an hour. Tim and I talked a lot about the chances of Eleanor being put back on chemotherapy and we really thought we had prepared ourselves for the worst news possible.
Oh how wrong we were.
Usually our consultations with Eleanor’s oncologist are around 30 minutes, they consist of a physical examination, basic neurological tests and some questions about how she is doing all with Eleanor in the room with us and rarely a nurse present. This time as we were entering the room, a nurse came with us and said to Eleanor “Fernando will have a little check of you Eleanor, and then we are going to go to the play room and leave Mummy and Daddy to chat”
OK. Deep breath, I’ve got this. The tumour has grown. She needs to go back on chemotherapy. We always knew this day would come. Eleanor can do this. We can do this. We have done it before. This time it will be easier.
We sat down and watched as the tests were carried out and then Eleanor was ushered out of the room. My heart was racing, I could hear the blood pumping in my ears, I felt hot and my mouth was dry, but I was OK, I had prepared myself for this, hadn’t I?
I heard words, I heard the words my brain wanted me to hear. “Good news. Stable. No growth….”
The word BUT, that common transitional word negates or cancels everything that goes before it. It is generally accepted as a signal that the really important part of the sentence is coming up.
More words, “nodule, small, another, lesion, frontal horn…”
It has spread. We are now dealing with more than one monster.
I asked if there was a possibility it could be anything else, maybe a cyst, but he didn’t need to even answer me, the look on his face said it all. Looking back it is visible in the previous scan but was overlooked as it was just so small at that point.
It was decided that due to the size of the new tumour they would again wait until the next scan before deciding on treatment. Holding off on chemotherapy for as long as possible is the aim. Chemotherapy brings a whole host of it’s own problems so unless they see a real need to jump in and treat they will assess at each scan. Finding the balance is the hardest part. Treat before it is needed, not get the required result and cause unnecessary toxicity, or treat too late and the tumour can cause more damage. Due to the location of the new tumour there is a chance that there could be further lesions in her spine that have spread through the cerebrospinal fluid pathways, with that in mind her next scan will be of her whole central nervous system rather than just her brain. The last scan of her CNS was over a year ago.
I can’t even think about that possibility right now, my mind won’t let me go there.
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 bit of a blur, it’s hard to concentrate on anything and my brain flits between the best and worst case scenario constantly.
Eleanor’s scans have, up until this most recent one, always gone quite smoothly – she gets very upset just before the anaesthetic and often goes off to sleep in tears which makes it so hard to leave her, this time however she slipped off to sleep really calmly in the middle of talking about how she was going to dream about Harry Potter, it was when she woke up that the calmness was shattered. We were called to the recovery room by the anaesthetist as Eleanor’s heart rate wasn’t picking up as they’d have expected. She was awake and kind of alert but her heart rate had bottomed out at around 4o bpm – much much lower than it should have been. An oxygen mask was held over her nose and mouth and everyone was staring at the machine measuring her heart rate. It was a really scary half an hour before her heart rate began to normalise and the staff stopped looking concerned. I kept looking at Tim wondering if he was as worried as I was but perhaps hiding it slightly better, at one point I was close to stealing the oxygen mask myself! We now have the added worry of this being a regular occurrence but there really isn’t anything we can do to prevent it while she is still having to be given an anaesthetic.
Our next focus needs to be preparing Eleanor for awake MRI’s. In the long run it is so much easier if they don’t have to put her to sleep to scan her. It is something we have to sell to her though as she seems reluctant to want to try!
Here are the pro’s and con’s of an awake MRI…
It is something to work on, we should hopefully be able to pay the scanner room a visit at some point prior to her next scan to allow Eleanor to lie in the machine and get a feel for the surroundings, although we won’t be able to have the machine turned on just feeling the machine and having it explained to her may help her understand and in turn make it less scary.
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. Since our journey began each scan has given us a stable result but since treatment stopped there have been some changes. This time we have chosen to wait until we can see Eleanor’s oncologist so he has has some time to look over the scans and hopefully give us a more detailed explanation of the results.
Fingers crossed it is news we have all hoped for.
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
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 GP referral. So today, I was examined, scanned and given my results, all in a morning’s appointment!
NEVER leave health matters to chance ladies, check your boobs and see your GP as soon as possible if you are worried about anything … and always go to your smear tests!
I think my heart broke 2 years ago. I think it broke to the point that it will never truly be repaired.
No matter how hard I try I can’t remember what it was like to be me prior to January 8th 2015. I said in a previous post that all of this has made me a better version of myself, which is true, but it has also shown me how I have a tendency to bury my feelings, pretend it’s all ok, smile and carry on. The great British way!
It’s not so hard to keep up the charade when something bad happens then life carries on, time really is a magnificent healer. Living in what can only be described as a nightmare for two years has meant that the feelings I have been burying for so long are slowly rising and I’ve acknowledged small differences in my behaviour. I feel anxious a lot of the time, I shake like I’ve drunk too much coffee, I’m losing the ability to see the positives and I struggle to relate to most people, meaning I find myself closing up in or avoiding social situations. The main trigger for this I believe was when chemotherapy ended and the hospital grip was loosened. We were effectively left to go it alone (obviously we are not, we still have a team on the end of the phone should we need it!) the regular hospital visits and the knowledge that something was being done was strangely comforting and I really didn’t realise that until it was gone – the old cliche!
I have had a few counselling sessions now, I found a local lady who just lets me sit and talk about everything, no judgement and no need for her to try and make me feel better. Friends and family are so amazing and I am eternally grateful to those people who send me a message every now and again, just to let me know they are there, but their job is to make you feel better, bring all the positives to the table when actually sometimes you just want someone to agree that it’s all a bit shit, and just listen.
I’ll never stop smiling though, even through my tears.
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 our actions and wondering if we asked the right questions.
This year the day just passed without any thought. I remember writing the date down somewhere and thinking it felt familiar but it wasn’t until later that day that it finally clicked.
This life is so ‘normal’ to us now that I honestly can’t remember what my life was like before Eleanor’s diagnosis. Having a child with a visual impairment is tough but it also makes you think outside of the box, challenges you and I truly believe it has made me a better version of myself. I won’t lie, I often wish things could be more simple for us. I’d love to have a more carefree outlook and not feel the blood drain from my body every time she gets a common bug. I’d love to be able to watch her run in the park or ride a scooter but our life is a different kind of ‘normal’ now.
The years ahead are so uncertain, as I have mentioned in previous posts now the chemotherapy protocol has ended we live 4 months at a time, in between scans, and hope we have a good chunk of time where her tumour remains stable.
The next scan is at the end of February, fingers crossed!
Happy New year everyone!