Our daughter Chelsea was diagnosed with a brain tumour in November 2012 and still fighting now.
The Charity has already helped fund towards the much-needed research into brain tumours by supporting Alder Hey's research department. The Trust have also helped support the local children oncology families and children's oncology unit in Stoke.
The Chelsea Burley Trust is now looking at purchasing a static caravan in North Wales so that children on chemotherapy can have that much needed respite. We can then help so many families on a weekly basis.
At the end of September 2013, our beautiful 5 year old Chelsea began waking up complaining of bad heads and sickness. In the mornings her behaviour changed she became very stubborn aggressive and no longer wanted go school, which was unusual as she has always loved school. Chelsea was diagnosed with migraines, over the weeks her symptoms became worse with her left eye sight being affected and she also had a tremor in her left hand. On the 6th November as our concerns grew Her Doctor booked her in for a ct scan at North Staffs hospital that same day.
That was when our whole world came crashing down. Any parents worse nightmare they told us that the CT scan had revealed a Brain tumour. There’s just no words to express how we felt, the staff were really helpful, kind, considerate and very supportive. Chelsea was admitted into hospital immediately and was transferred to Alder Hey hospital the next morning where she had an MRI scan. The scan showed that the tumour had grown next to the main stem and had some blood vessels going through it, which made the removal of the tumour complicated. The next morning Chelsea had her operation where they drained the cyst that had formed and taken a biopsy, but was unable to remove the tumour. She was in theatre for 6 hours and it felt like a lifetime. A few days later Chelsea was allowed home where we had to wait for the results. A week later we went back to Alder Hey to get the results, they told us that the tumour is a low grade glioma. They told us that because the tumour is on the blood vessels that it would be too much of a risk to remove straight away so they explained that Chelsea will have Chemotherapy to shrink the tumour. After 10 doses of chemo Chelsea had another scan which revealed that although the cyst had grown, the tumour had shrunk and that the blood vessels had been reduced. She continued to have the chemo and had another scan on the 15th March. The results were really good news. It had shrunk some more, but much more the blood vessels going through the tumour have now GONE, which was really, really good news. In June she had her 3rd scan which had revealed that the tumour had continued to shrink as well as the cyst this time. Although it is possible to operate now it was still high risk. Septembers scan was sadly not bad but not so good. The tumour had not shrunk any but it was stable. The next scan was booked for January.
In November Chelsea got a infection on her Hickman line a couple of times then one morning I went to get her up for school and checked her line to find it had gone. Dad had a big panic, Mum was very calm, mum should have phoned the hospital instead of me as when we arrived at the hospital, I had told them on the phone it had snapped of inside and there was nothing to clamp. In my panic i didn't realise due to the infection It had only come out, but they had the surgeons ready for us on arrival at north staffs hospital to fish the line out oops :) the line had come out 1 day short of her having it in for one year. The good part about it was Chelsea couldn't have a new line in until the infection had gone. So as soon as the area where the line was had healed she had normal baths and we all got to go swimming for the first time in over a year. The girls loved it in the pool and I lost count how many times we went on the water slide. Strangely Chelsea missed her line and was soon back at alder hey having a new one.
January and the next scan had come the chemo had done its job what they had wanted and got rid of the blood vessels but was no longer working, the tumour had grown a couple of millimetres. We had to make the hard choice of the surgery. We made the choice on the Friday and she was back on the Tuesday and getting ready for the surgery the next day.
Chelsea was as brave as ever she knew she was having her naughty lump removed and as always let the doctors and nurses do whatever they needed. Going into theatre Chelsea was Chelsea, chatting to them all and making them laugh doing her little party trick of telling them her own 9 digit Alder Hey number that she learnt when having her chemo every week. As she went sleep at that moment I had nothing but pride on how brave our daughter really is. As I left Emma was there asking what had taken so long. It's simple she wouldn't shut up and was making them all laugh :)
Along 6 hours and they come out and to hear the words she's ok and they got it all were amazing can not put into words. Her bravery never stopped there and she was soon recovering well. The next evening she was out of bed and Friday was walking small distances and getting stronger and by Saturday she was home. With just a week off school she was ready to be back with all her friends at school.
Sadly the results of the tumour did not go the way we all hoped and the tumour was a grade 2. This means it is more likely to come back. But her scan during theatre did show something else but it is somewhere the surgeon can't get to without doing damage. All we could do is wait and see if anything grows. Alder Hey said they would keep a very close eye on her and do regular scans every 3 months like before. The next scan was in march with the scan in the Morning and results in the afternoon, and so far so good with no progression. Then the same in July the scans was good it even showed the shadow from the scan after surgery had reduced? So all seemed well and and was over the moon.
the next scan was on the 23rd December and sadly it had showed the shadow had grown plus the possibility of a second tumour but this could also be fluid. we went back to Alder Hey before the new year to discuss what the next steps are. She was straight in after new year to have a port fitted instead of the central / Hickman line which was Chelsea choice this way she can carry on like normal with Baths Swimming etc ...... But it does mean she had to be extra brave and have a needle every time she has chemo and bloods taken. Chelsea has now begun Chemo again and this time is on a very long road to recovery it is already a bit of a roller coaster and it is very hard on her but she is a very brave girl and is taking it all on.
She is one hell of a remarkable girl and we have complete faith in her.
THE CHARITY LOGO
The Chelsea Burley Trust logo was created by Chelsea herself.
Back at the very first scan at North Staffs when they found the tumour. As we walked onto the children's ward, the nurses whisked Chelsea away from us and took us to her private room to tell us the devastating news. After a bit of time for it to sink in, the nurses came back in with Chelsea and showed us her big butterfly she had made. The butterfly then hung in our living room window for the next 17 months until the tumour was removed. Now it can fly high as the charity's logo.
TRENTHAM RUNNING CLUB
Trentham Running Club are proud to have adopted The Chelsea Burley Trust, As the official club charity and have done so since 2015.
After successfully having her Tumour removed at the beginning of 2014, Chelsea followed in her Sister's footsteps and joined the club.
In the year she became a fantastic little runner, her big runs where Uttoxeter Fun Run 3K (14:44), Cheddleton Christmas Pudding 2 miles (21:02) and Chelsea WON the Under 7's 2 x 5k Oblivion Mud Runner Weekend. At the end of a great year running, At the club's awards night Chelsea pick up the merit award.
The club have done various events throughout the year in support, In which we are very grateful.