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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 for all your kind words and gifts for Eleanor – we are so lucky to have you in our lives x 

Superheroes…

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 one can take the fear away. Seeing your child go through pain seeing them cry and there’s nothing you can do it takes strength and courage. Given HOPE the word that means so much and in some cases the word HOPE changes to palliative care. Soul destroying.
Keeping positive and trying to act normal is tough when inside you are tired and heartbroken.
Being a super hero mum or dad is the hardest job of all. The strongest people who everyday battle with their child, and beyond.

Words courtesy of : The Indee Rose Trust

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

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 last year a handful of shops had one tiny gold ribbon window decal in September!

You may think childhood cancer is rare until it happens to your child, then you sadly see that it is not the case!

Time to turn the world GOLD!

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!

Jasmin…

Another family loses their child to a brain tumour before her life has barely begun…

Brain tumours kill more adults and children under 40 than any other cancer and yet receives only 1% of the national funding into cancer research. On top of that, and despite Cancer Research UK using children in 40% of their ad campaigns to tug on the public heartstrings, they use only 2% of their funds to research paediatric cancers.

Jasmin never had a chance. DIPG is terminal upon diagnosis. The only treatment available is radiotherapy, but it isn’t a cure. It just gives the family a little more time to make memories.

We are still using chemotherapy drugs developed in the 1950’s to treat our children. It is beyond heartbreaking.

Sweet dreams Jasmin  x

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