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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 cancer for more than half of her life, but she doesn’t let any of that hold her back.

So here she is, ready to start a new school year and ready to show the world her visual impairment will never hold her back!

My daughter, Eleanor. x

Tests, timings and 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 the wheel, so to speak, are working together and that everything runs smoothly.

While the NHS is great and we are extremely grateful for the excellent care both Eleanor and ourselves have received over the last few years, it is so important that as parents we keep on top of everything, when multiple hospitals and services are all working together things can very easily be missed, or assumed! 

This particular chemotherapy regime is 52 weeks of weekly treatment called Vinblastine, it is also a ‘count dependant’ chemo so a blood test has to be taken within 48 hours before it is given to ensure the patient is well enough to receive the drug. A full blood count (or an ‘FBC’ if you’re a fan of Holby City or Casualty!) is a panel of tests which examine the different elements of the blood. In Eleanor’s case we are looking predominately at the results of her Platelets and Neutrophils. If they drop below certain levels the chemotherapy is given at a reduced dose or omitted completely. If chemo is given when these counts are too low it can cause severe damage to the bone marrow.

Eleanor has her pre-chemo blood test on a Monday morning and then chemo is given on a Wednesday after school. The blood test is carried out at home by the community nursing team who then deliver the bloods to the lab at our local hospital. Results need to be received by our local hospital by mid-day on the Monday to enable them to be checked, approved by the powers that be and the chemotherapy ordered to have it delivered in time for our arrival on the Wednesday after school. It is all very tight and we are hoping it will all go to plan for the year! 

Thankfully we have the backup option of Eleanor’s lead hospital, The Royal Marsden, who do have a lab on-site and can make and deliver chemotherapy within a few hours, but having the chemo at our local hospital makes our lives so much easier and means that Eleanor’s education doesn’t take a hit too! 

So here we go. Less than 4 years since diagnosis and Eleanor is starting a second chemotherapy protocol. This tumour really isn’t going to give her an easy ride!

Wish us luck. x

Surgery…

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 tough. When you are leaving your small child in the hands of a surgeon you WANT the good bedside manner, you want that warm personable touch because you are trusting them with the most important person in your world. Luckily Eleanor’s surgeon is both of these things, Tim and I both remember how he put us at ease last time and I was very relieved when I saw him walk in to the waiting room this time around!

First thing required was a cannula to enable the anaesthetic to work it’s magic. Eleanor has had more cannulas than I can remember now but her veins were not playing ball this time. I don’t know if it was because she was nervous or if it was just ‘one of those days’ but the poor nurse tried both arms and both times the veins bruised meaning the cannula wouldn’t work. Unfortunately we had only put numbing cream on the insides of her arms so the options were to try another vein in that area or go for one on the hands without numbing cream! The latter was not an option for Eleanor so instead we tried a heat pack on her arms to try and bring out a vein that could be used. Third time around and this time we were lucky… I think I held my breath until I saw blood in that line! Poor Eleanor, not a good start!

Before we knew it we were being called to theatre and we all walked hand in hand through the corridors of the Hospital. Eleanor was so brave and I looked at her lying on that bed filled with love and also sadness. Proud that she is taking  of this all in her stride, chatting away and joking with the anaesthetists about Harry Potter and talking about what she would like to dream about while she was asleep, but also sadness that a child of 7 should even have to think about surgery and medication. She went off to sleep calmly with a big yawn and I stroked her hair and kissed her goodbye.

Without going into too much detail the surgery went well and was over in the blink of an eye. We didn’t even have time to finish our lunch and pop to the pharmacy to collect some medication before we were being whisked back up to theatre recovery! Fully prepared to be faced with a screaming disorientated Eleanor like the last two times she’s had surgery I was so pleased to walk into recovery to see her smiling and once again chatting away to unfamiliar adults! She amazes me so often, for someone so young and also with such a significant visual impairment, she is confident around adults and can certainly hold her own in a conversation!

Everything went well and after a bite to eat and a little check over we were sent off home so Eleanor could recover… a few days off school should do the trick! x

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 week course of a chemotherapy drug called Vinblastine. This will be given every week for a year, or as close to 52 treatments as possible depending on how Eleanor tolerates the protocol.

The upside to this treatment in comparison to her last protocol is that this can be given over just a few minutes as an outpatient – no overnight stays for chemo or endless hours of fluid infusions, it is also much less emetic than the drugs from her previous protocol so we should see very little of the sickness we saw last time and hair loss should also be minimum.

However there are also numerous downsides to this protocol. The drug is count dependent meaning she requires a blood test no more than 48 hours before the chemo is due to be given, her blood results determine the dosage of the drug week on week. If she doesn’t tolerate the drug well and we see a number of dose reductions or treatment having to be postponed it could mean that this protocol takes longer than a year to complete. Every single week for a year means that her body has very little time to recover, ever. Chemotherapy takes 7-10 days to reach cell level so by the time she is reacting to the last dose she is being given another. This drug is notorious for rapidly dropping blood counts meaning that stays in hospital for infections and blood/platelet transfusions might become normality for us. We can only hope she tolerates this as well as she did her last protocol. Fingers and toes firmly crossed!

The next step is to have her port-a-cath refitted at the Royal Marsden hopefully sometime in mid-May. Watch this space!

We believe in Magic…

 

Today we said our final goodbyes to the beautiful, selfless and kind hearted Meg Bhari. A young girl who brought joy and happiness into the lives of hundreds of poorly children despite fighting her own brain tumour battle.

She set up the incredible charity ‘Believe in Magic’ when she was just 16 and organised out of this world trips, gifts and the amazing Cinderella ball which we attended in 2015, the year Eleanor was diagnosed. That event skyrocketed our social media campaign leading to real changes in the awareness of paediatric brain tumours.

She made things possible for our family that we would never have dreamed of, a shining light of love and hope in our darkest hours. We will be forever grateful.

 

Sweet dreams Meg, our Fairy Godmother.

x 💖 x

Support, empathy and 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 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’sHeadsmart‘ 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!

Brain tumour signs and symptoms

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.

 

 

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 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!

 

 

Prepare…

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?

WRONG.

I heard words, I heard the words my brain wanted me to hear. “Good news. Stable. No growth….”

Then “but”

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.

 

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 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…

Pro’s

  • No anaesthetic and in turn hopefully no heart rate problems. There are a number of problems that can arise from simple anaesthesia so avoiding as much as possible is always a better option
  • No fasting – instead of going sometimes up to 10 hours with no food, she would be able to eat as normal
  • Scans can be undertaken at any time, no need to book a team of people to oversee the anaesthetic side of things
  • Tim or I are able to go with her, although we are not able to be in the same room we can talk to her the entire time
  • She can listen to her Harry Potter audio books!
  • An MRI scan doesn’t hurt!

 

Con’s

  • As contrast is required to highlight the tumours they would still need to cannulate, to inject the contrast
  • Lying completely still for 45 minutes – I know few adults who could manage this. It is so imperative that she does not move or the images will be blurry which would make the tumour impossible to measure accurately.
  • The MRI scanner is noisy and for someone with a visual impairment, I would imagine pretty scary

 

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.