A Happy New Year for Declan's Family

24 Dec 2020, 11:59 a.m.

Declan was diagnosed with a condition called medullablastoma, the most common type of cancerous brain tumor in children. Declan's mum, Tasha, shares their story and plans for a positive 2021.“Declan is a very sweet, polite little man of seven. He cares deeply about others and is always kind. He loves to play football, and be with his friends and family.

“His main character traits are his smile and his infectious giggle. He is also a perfectionist and always likes to try his best at anything he puts his mind to.

“Declan is the middle child; he has an older brother of 11 and a five-month-old baby brother. He is a very doting brother and thoroughly enjoys now being a big brother himself.”

Before the diagnosis 

“Before the diagnosis, Declan was experiencing occasional headaches, which we put down to being December bugs doing their rounds at school.

“One morning, he woke with a headache. The difference that morning was that he was holding the top of his head, which was unusual. After taking him to our local A&E, we were called back for an MRI scan where they found a tumour on Declan’s brain.”

Celebrating GOSH staff 

“At GOSH we received surgery, radiotherapy, and chemotherapy. Every single member of staff, from the nurses, to the doctors, to the surgeons, to the anesthetist team, to the play specialist team were incredible. Not only were they brilliant with Declan. They were equally as good to me - a mother that wasn't dealing with the situation in front of her very well at all!

“A special mention goes to the Koala ward play specialist, Sally-Ann, who Declan was extremely fond of. During the pandemic, the playrooms have been closed and the Play specialists were limited to what they could do with the children. Despite this, they always appeared with ideas to entertain the children and keep smiles on their faces.

“Nicky our oncology nurse was, and still is, our guardian angel. She is there at a drop of a hat, at any time, and always at the end of the phone for concerns and questions. She offered an antidote to any pickles we got ourselves into!

“Dr Dahl is an incredibly special lady. Between her and Dr Aquilina (who preformed his surgery) they saved my son’s life. Every time Dr Dahl phoned or video called, she was gentle and reassuring, telling us that everything was going in the right direction, and my boy was perfectly safe in her and her team’s hands.”

 The end of treatment bell 

“Watching Declan ringing the bell was a mixture of emotions. Proudness beyond belief, relief, admiration for Declan’s bravery, but there was also a part of me that felt some sadness. This wasn't because I was upset it had finished. It was due to thinking that we had to go through so much worry and sadness to get to this happy point.”

Due to COVID, families were not able to gather around the ward and watch children ring their end of treatment bell. To solve this problem, nurse Nicki was able to facilitate a transportable one, so families were able to congregate outside in a socially-distanced way outside the hospital and celebrate this milestone.

“The idea of GOSH now having a portable bell to ring outside is a perfect idea, it means that families that have gone through this awful thing together can all witness the beauty of a child ringing the bell, its a very special moment,” says Tasha.

Advice to other parents at GOSH 

Below, Tasha shares some advice that will help any parent get through having a seriously ill child at GOSH.

  • Accept peoples help, even if it's as small as offering a cooked meal, offering to do your school runs or running the hoover round for you. Your time is taken up by caring for your child and attempting to the best of your ability, keeping them as comfortable as possible and a smile on their face. 
  • Take it a day at a time ( i personally despised this saying in the beginning as I'm the kind of person that likes to be in control of things and keep to routine) 
  • Some days will be harder than others. On those hard days think to yourself tomorrow will be better. 
  • Try, really try and see the positives. which admittedly some days seems impossible. Even an extra smile or giggle becomes a positive. 
  • Have faith in your medical team. i can honestly say that every single member of staff at GOSH are on a complete different level, they're not your average doctor, nurse, surgeon or play specialist. 
  • Expect some really tough days in the beginning (sickness, low moral, weight loss, temperatures, achy bones etc) but please remember it does get easier to deal with. 
  • We found keeping home life as normal as possible helped, we kept up our sense of humors and our smiles and banter. This helped Declan feel normal around us. 
  • If you have ANY concerns, regardless how little they may seem to you, shout out. GOSH always have an antidote to any pickle that arrives and they always have a plan b, c and d. 
  • Most importantly remember (or continuously chant to yourself which is what i did) that there is light at the end of the tunnel, it may seem very dark in places and maybe for longer than you are comfortable with, but there is light, you have my word, it just may take a little while to break through the darkness.” 

Looking ahead 

“2020 was the toughest year we have ever come up against, but we’re looking ahead with a positive outlook.

“Next steps for us as a family is to hopefully get Declans Hickman line removed. Then to continue to work on his mobility (lost due to the position of the tumor during surgery) and continue to increase his weight. And smile our way into 2021 knowing our little hero is now cancer free."

We pray that every single little hero battling that awful disease gets the chance to ring that bell!

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