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Lavinia and her very supportive friends would like to raise money for CHECT! 

Lavinia was diagnosed with retinoblastoma a rare childhood cancer at just 8 months old, she had 6 cycles of chemotherapy, which meant lots of hospital sleepovers, lots of injections, antibiotics and blood transfusions! 

Lavinias tumour has stayed inactive since she finished chemotherapy at 13 months old but she has regular check ups and post chemo side effects! 

Lavinia and her friends are going to do Castle Hill steps FIVE times to raise money and awareness

The girls doing it are Lavinia, Athena, Olive, Mabel, Nancy, Anabelle, Poppy, Sophie, Daisy, Beth, Bella, Tilly and Izabella

Here is Lavinias story 🎗💖🎗

Lavinia story

So I wanted to share with you all Lavinias journey of diagnosis and treatment, I have never written it all before and I apologise for how long it is.

Thank you to everyone who has donated, shared or coming down to support Lavinia and her amazing friends with this challenge 🎗💖🎗

As a new born baby we noticed a slight squint in Lavinias left eye. We asked the health visitor who told us it was common and her eyes just needed to strengthen.
At the beginning of October when Lavinia was 7 months old Lavinia’s daddy, Steven had noticed a glow reflecting from Lavinias eye. I couldn’t see it and mostly dismissed it. Steven saw it several times and good old doctor Google told him it could possibly be cancer, but either way to get it checked. I’m too optimistic and google anything now a days and you’v got cancer. Luckily Lavinias daddy pushed for her to be checked by the GP. On October 25th 2016 Lavinia went to the GP and he too saw the glow. He acted amazingly and tried to get her seen within the next few hours at the hospital. We couldn’t be seen until the following day, so we had a fair bit of worry, and what ifs while we waited.
On the 26th 2016 we went to the eye clinic at the hospital. A few people tried to shine bright torches into Lavinias eyes, but as expected she got distressed quite quickly. We could feel the tension in the room, and how it went from one to several people trying to see in Lavinias eyes. They tried to do an ultrasound but Lavinia was getting very distressed so they asked us to wait outside the room. A lovely old man was sat by us, he assumed the appointment was for me as I wear glasses. When we had explained it was for Lavinia and the concerns he was very upset and couldn’t believe a baby could have eye problems never mind something more sinister! We were called back in to be told on Monday Lavinia would need to be put to sleep for a better look.
On Monday 31st October, it was Lavinias first Halloween! Whatever plans we may have had were completely put to the back of our minds as we had to take our little lamb to hospital to be put to sleep for the very first time. Lavinia was dressed in her super baby costume, cape and all! It was the first time we had to refuse milk and food from her, and the first time we’d kiss her good bye and anxiously wait for her to return. The hospital staff where amazing, but nothing prepared us or the reality we were about to face. We were taken into a room by a doctor- at the time we’d never met but has since been a massive part of Lavinias care. She sat us down and told us, your daughter has cancer, it’s called retinoblastoma, it’s a rare childhood cancer that effects her eye. I don’t remember much more about the day. We were told we would be going to the royal London hospital on Wednesday for Lavinia to be put to sleep again for an official diagnosis.
We felt ready on Wednesday the 2nd November, we felt ready for the long train journey, ready for Lavinia to be put to sleep and ready to hear her official diagnosis. We were told she was a grade D tumour - E being the worst. We had an option to remove Lavinias tumour, which meant removing her eye, or we could do chemotherapy and possibly save what ever sight is remaining in Lavinia’s eye. We chose chemotherapy, it wasn’t an option to us, the idea of removing our babies eye when we could save it just didn’t seemed an option. We met lots of people who offered us lots of support, CHECT staff, the retinoblastoma team, play therapist - Gemma and lots of nurses who we would continue to see for many years of check ups.
Lavinia turned 9 months old on November 21st, we spent this day at Addenbrookes hospital. Lavinia was put to sleep for the 3rd time, but for her first surgery! She was taken away from us unscarred, I’d barely seen Lavinias blood! She came back bandaged up with her hickman line coming from her chest. We entered a day ward that would become a second home, a ward I’ll never forget and the children and families I’ll never forget seeing. This is where Lavinia would receive her first chemotherapy cycle. The other children weren’t new to this life, walking or crawling with their chemotherapy stand rolling behind them. We were later moved to a ward for us to have our first hospital sleepover in as Lavinia’s chemotherapy continued to be administered late into the night. I don’t remember too much of that night, I can remember the room and I can remember the constant beeping down the corridor, the nurses constantly in and out of our room and others, I remember the constant checks on Lavinia and I remember watching her sleeping.
The following day we were discharged, and what a strange feeling that was. We left with a bag of medicines for Lavinia and a booklet of what to be concerned about and when to seek advice. Our daughter was cut open with stitches and a hickman line hanging from her chest. She smelt all clinical and she didn’t have the same bubbly look on her face.
Later that evening, and this image is permanently printed in my head, Lavinia was being sick constantly, and her breathing wasn’t right. She was laid on towels on the living room floor, on her side, half asleep being sick, whimpering and breathing funny. We called the hospital as we were concerned and our local asked us to come up for her to be checked. I was so worried and I didn’t know what to expect. The doctor asked us our concerns and I was in such shock and upset we couldn’t explain- but just look at her!! He asked us ‘what did you expect her to be like, she’s just had chemotherapy’ and he sent us home. I didn’t sleep much that night and Lavinia continued to be sick and struggle to breath.
We called back up the following day as her breathing had got so much worse. She was so small and so lifeless it was horrible. We went back to our local and the doctor was very angry she had been discharged the night before. Lavinia had croup! Lavinia had a temperature over 38, which in the world of oncology and central lines meant, 48 hours from the last temperature in hospital and hooked up to IV antibiotics! This was our first longer sleepover in hospital, with visitors, a big sister Ciara and very large teddies, it didn’t seem too awful! During this first hospital stay Lavinia learnt how to crawl, attached to fluids and antibiotics and her line following her across the hospital floor!
A few days later we were back in hospital as Lavinia had a rash around her hickman line, Lavinia was reacting to all the dressings and it made her so itchy! She was given piriton and they changed the dressings.
Lavinia really struggled with her blood levels. She was neutropenic which meant she could catch bugs easily and get very poorly if she did, we had to mostly isolate- which became a very lonely place and she needed daily injections to try and up her levels.
Christmas Day we managed to avoid hospital! We spent it with all of Lavinias grandparents and she was mostly content or sleeping.
Boxing Day we had to nip to the hospital for bloods, it was a fun visit with big sister Ciara by our side! Later that night Lavinias temperature spiked and so we had to go back up to the hospital to be told Lavinia had RSV - more antibiotics!!
Finally, almost 3 weeks late Lavinia received her second cycle of chemotherapy on 30th December.
She suffered the usual sickness and low blood levels, and by 6th January we were back in hospital as the area around Lavinias Hickman line was infected. This meant more antibiotics, unfortunately during this stay Lavinia had lost a lot of weight. She didn’t eat much food - even before being diagnosed, food was a battle. But now Lavinia was refusing to take any milk from bottles. And so an NG tube was fitted. This hit me hard, as if she didn’t have enough to deal with! Swaddling her to have the tube fitted and watching her gag and sick it back up repeatedly was so heart breaking. Lavinia was still neutropenic and had to have daily injects to up her levels. Instead of daily community nurse visits or weekend hospital trips Steven was trained to give this injection. Being a carer to your child is so draining emotionally and physically and this tested us in every way.
Every time Lavinia was sick she often brought up her NG tube, this meant a hospital trip or a community nurse visit to put it back down by Lavinia being swaddled.
On the 17th January Lavinia had her fourth special sleep, but her first tumour check since starting chemo. It was an all round positive visit. Lavinia’s tumour had drastically shrunk and we were told Lavinias retinoblastoma was none genetic and none hereditary, meaning we didn’t pass on a gene to her, and she didn’t have the gene to pass onto her children.
On January 23rd Lavinia received cycle 3 of chemotherapy, this was a big half way mark, only 3 more to go!
Unfortunately by the 26th Lavinia was back in hospital as the skin around her line was still infected and she was now running a temperature. She had bloods taken and cultures to check if her Hickman line was infected, the doctors sent Lavinia home with oral antibiotics and told us to come back with any change.
The following day Lavinias temperature was extremely high so we went back to the hospital. They did bloods again, her haemoglobin results were low the day before, today’s confirmed she needed her first blood transfusion. She received this through the night, and I didn’t care that it was 2am and she was bouncing off the cot bars, seeing her smile was amazing! Lavinia’s bottom was very sore and blistered, nappy changes were horrible, a simple thing she had to be pinned down for!
The next day we had it confirmed that Lavinias temperature was because her Hickman line was infected. This was the worst possible news. Me and Lavinia had our first ambulance ride the following day as they transferred us to Addenbrookes to wait for surgery for the line to be removed. Lavinia was on the emergency list for the line to be removed for 3 days, this meant she had to keep being starved to be told in fact today she wasn’t high enough on the list.
Lavinia went down hill through the night and on the 1st February Lavinia was very poorly. Her breathing wasn’t great, she was barely waking up and was being sick. She hadn’t had much fluid at all and her heart rate wasn’t were it should be. She was diagnosed with sepsis and the room filled with doctors early that morning and she was taken away before the emergency list even started that day for her line to be removed! They struggled to find a vein to put a temporary line, a mixture between chemo, sepsis and her being a baby. She came back from surgery like a pin cushion and with a temporary line coming from her neck!!!
The following morning I woke up and I had neuro virus, I was removed from the hospital! Daddy had it too and so Nanny came up to look after Lavinia. They were transferred back to our local hospital. It was so hard being away from Lavinia but I was grateful for the break, I hadn’t spent any time away from her, I did every hospital stay because that’s who Lavinia wanted! She was such a mummy’s girl, but having that removed way from us, meant I recovered and I slept! The following day Lavinia was brought back to Addenbrookes as she was still very poorly, she also had neuro virus too! Aunty Amy swapped over with Nanny and stayed the night at Addenbrookes so Nanny could catch up on well deserved sleep! I was allowed back early on the 4th February!Unfortunately the line in her neck had stopped working, a doctor wanted bloods, and the only way was to squeeze it from Lavinias big toe. She screamed with every drip of blood- she hated it! I hadn’t seen Lavinia smile for weeks, she wasn’t playing at all, she cuddled and slept! This was the lowest point in Lavinias journey for us all. Addenbrookes isn’t local and it was costing a fortune having anyone visit us. Luckily they later discharged us with Lavinia on oral antibiotics.
Lavinia didn’t have a new Hickman line fitted she had a port line fitted instead on 10 February. This was under the skin and meant Lavinia could bath which was so important as her bottom was still very blistered and sore.
Lavinia’s first birthday was spent around her grandparents. She was neutropenic and so the soft play plans were put on hold!
My family came to visit the following weekend and we had a small party.
On the 1st March Lavinia needed another blood transfusion. These became a few hours in hospital, but we knew she was always a happier baby after them!
Lavinia had her sixth special sleep, it was in London to check the chemo was doing it’s job, and it made chemotherapy feel almost worth it to know that it was shrinking!
Lavinia received her 5th chemotherapy on March 10th.
We avoided hospitals between these cycles, just the usual NG tube put back down. Lavinia’s bloods were still low and she was still regularly neutropenic and needing daily injections, but this had become normal.
By Lavinias 6th and final cycle of chemotherapy on 28 March, she had lost all of her hair. To look at she looked poorly and she still relied on her NG tube. Barely any food had passed Lavinias lips and she was 13 months old! Lavinia rang the bell which marked the end of treatment. And this was done with mummy, daddy, Nanny, Grandad and Ciara by her side and of course all the ward and the amazing doctors nurses and play therapy team watching and cheering her on!
Lavinia needed one more blood transfusion after chemotherapy. And we were so great full for all the people that donate blood to make these possible.
Lavinia was chosen to be the face of Retinoblastoma week - look sharp for RB!
She learnt how to walk at 14 months old, amazing mile stones when she’d been so poorly!!
Unfortunately Lavinia struggled to get her blood levels back up after chemotherapy had finished and had to keep her port line in until October! When this was removed it was like normality was allowed to start, we said goodbye to the community nursing team who we’d seen at least 3-4 times a week for almost a year! And we announced we were expecting a new addition to our family.

Although Lavinias tumour has stayed inactive she has regular checks to make sure it is being good!
Lavinia has suffered a lot from treatment and a lot of things still affect her now.
But she is a beautiful strong amazing 5 year old girl with a story to tell!!

Unfortunately hospital visits cost us a lot of money, hospital parking, fuel, I wasn’t fed on the ward and loss of earnings. CHECT supported us financially.
CHECT were there with a friendly face at every London appointment and phoned regularly to check in.
The support they offer to families on treatment is fantastic and very much needed!

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