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Callum's Story 

The foundation is Inspired by Callum Rennie - Aka Big c. .

This is Callum's story 

Anchor 1

Callum was born on the 8th April 2019. 4 weeks later he was diagnosed with an ATRT brain tumour. We were very lucky to have Dr.Mano as Callum's neurosurgeon as he took a risk and operated on Callum on 21st May 2019, despite being advised that it was too risky. Dr.Mano was able to remove the tumour and Callum was able to start his chemotherapy treatment at the beginning of June. Eventhough Callum was bearly two months old he took everything in his stride. He tolerated the medicine and still enjoyed his bottle feeds and being entertained by Lewis. He finished treatment in October 2019 after a high dose procedure which required a 6 week hospital stay. This was incredibly tough, not only on Callum but the whole family as Lewis couldn't see Callum during this time. When Callum got home he bounced back really quickly and started to eat solids, just like any 6 month old baby. He started a rigourous O.T and physio programme to help reach the 'normal' milestones as the surgery left him with a slight weakness on his left side. Callum had great determination and this showed through during these sessions. Callum was able to sit unaided by his first birthday, a huge achievement for him!

Callum continued to grow from strength to strength. He loved playing with his brother and getting out and about. He adored Mr Tumble and ice cream. Callum continued to be monitored by the haemotology unit at the Royal Hospital for Sock Children in Belfast. He had regular scans and check ups with his oncologist Dr.McCarthy. callum was admitted to hospital a few times with issues with us shunt, these were quickly rectified and again he bounced back. 

When lockdown happened in March 2020, Callum was definitely at his best. He continued to thrive as as a family we really cherished the moments we had together while working from home. We enjoyed the simple things, going for walks, enjoying the back garden and just simply having the time together without the rush of daily family life! 

During a routine scan on 21st June 2022 another tumour was discovered. This time it was in a different place of the brain, the brain stem. The hospital acted to quickly, his surgery was scheduled for the next morning and plans were starting to be put in place. 

This time things didn't go as smoothly. The surgery took a lot of of Callum. He took a few days to come back around again after the operation and it left him incredibly weak. He had developed Bell's palsy on the right side of his face and this affected his ability to swallow and speak. Chemotherapy started very quickly after the operation and was very tough for Callum. He had more hospital stays than anticipated this time. Callum still took everything in his stride. He was still happy in the hospital, pretended to be a dinosaur to scare the nurses and watched a lot of Mr Tumble and Blippi! The nurses often commented on how pleasant Callum always was and how they enjoyed looking after him. Callum finished treatment in September 2022, just when his little brother Zack was born. While Callum was still very well and unwell he always made a huge effort to give his brothers hugs and kisses. He worked so hard to get his strength back. He continued with his O.T and physio and other professionals. Eventhough his development was impacted, Callum never gave up. He had to learn how to sit up again, use his right side and worked so hard to communicate. He was making excellent progress. 

He had a routine scan in March 2022. During this scan another tumour was detected, in the same place, the brain stem. This time surgery wouldn't be able to remove everything and we had no more chemotherapy options. Radiotherapy was a possibility but would have had a detrimental effect on Callum's quality of life. After numerous discussions with all Callum's health care professionals the decision was made to manage Callum's symptoms. Since March 2022 we enjoyed every moment with Callum. We went a few short breaks with our families, we enjoyed a therapeutic break at Daisy Lodge and enjoyed day trips. We were never in the house, we went to the park, walks down the promenade and plenty of ice cream. 

Not all of this would have been possible without the support of local charities. We were delighted when Chris decided to set up the 'Big C Foundation,' this is our opportunity to continue to support all the local charities that helped us aswell as families experiencing similar situations. It also means Callum's name will never be forgotten, this will be his legacy. Still a superhero!


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