Charlie was born in January 2010 joining his big sister and completing our family! He was a happy healthy child with very few visits to the doctors.
During the middle of October 2020 Charlie had started to complain of pains in his legs and on Friday 16th October just before bed I noticed small bruises over Charlie's legs, back and arms and had planned to call the doctor Monday morning. On Sunday Charlie attended rugby and that evening his dad received a message from Charlie's coach who is also a GP to say he felt Charlie's colour and coordination was off and advised Charlie should have a blood test. Charlie's coach actually took his blood for us on Tuesday 20th October and that evening I received a call from the hospital and was asked to pack an over night bag and go in. We were then told the awful news that Charlie had leukemia and we would need to go to Southampton where he would have chemotherapy.
Charlie started induction chemotherapy on the 22nd of October and after just 10 days he was unable to walk due to the pains in his legs. Charlie was also having dreadful pains In his tummy and was diagnosed with typhlitis another side effect caused by the chemo. He then had a seizure, the crash team were called and they were unable to bring him out of it so they had to sedate and intubate him. He then went for tests and was diagnosed with a condition called PRES another side effect. After 48 hours Charlie was woken up but he was not himself, his body was weak he was unable to speak properly and the pain in his tummy had become excruciating for him. Still in PICU a week after the seizure the surgeons decided to take him to theatre to as after tests they were concerned his bowel had perforated. Unfortunately they were right and Charlie came back up to PICU with a loop ileostomy, he was extremely septic and was sedated and intubated again for another 2 days.
When he was woken up his pain was still very severe and unfortunately his laparotomy wound was not healing so he had a special vac dressing which was changed every 4 days in theatre. He had this for 4 weeks and during that time we were moved back to the oncology ward. While back on the ward Charlie had started to regain his strength and learned to roll, sit up and stand with the aid of a zimmer frame for a short period of time. We were finally discharged from what should have been an 8 day stay on the 31st of December 2020! Charlie then went from strength to strength learning to walk after just 3 months of regular physio.
In May 2021 Charlie started the maintenance phase of chemo and was able to have his stoma reversed as the chemo was not as harsh during this phase. He went back to school, joined the football team, basketball team and even ran the 'pretty muddy' raising money for cancer research! This was one of his goals when learning to walk again and he smashed it along with his cousin who did it with him for support! Everything was on the up until the 11th of October when Charlie started having pain in his abdomen. We took him to our local hospital and after a day of scans amd tests we were told his bowel had perforated again. That night we were transfered back to Southampton and at 1.30am Charlie was taken for life saving surgery. They found Charlie had a 2 holes in his bowel and another in his abdominal wall. From theatre he was sedated and intubated again and transferred back to PICU. Charlie spent 4 days asleep and when he was woken up he was in a dreadful state. He was so infected he had become delirious and was having awful hallucinations. 2 days later after more scans he was taken back to theatre. Charlie was extremely poorly by this point, they then found another hole in his bowel as well as a second hole in his abdomen and this time decided the best option was for him to have a stoma again. He was sedated and intubated for a 4th time and was put on lots of strong antibiotics. He was kept asleep for 10 days this time. He woke up confused but feeling much better! Unfortunately once again his laparotomy wound would not heal so he had the vac dressing and 4 day theatre trips again. At the beginning of December his surgeon was happy that he was well enough to go home and I would return twice a week for theatre to change his dressing.
Charlie improved every day and learnt to walk again for the second time! When it was decided Charlie's wound could be dressed with regular dressings I attended theatre with him, where the surgical nurses taught me how to dress it so I was able to do it at home. By March Charlie's wound had completely healed!
He is now back at school and is enjoying being back with his friends and having an active social life! It was decided that parts of Charlie's treatment would be removed from his plan and his chemotherapy would be reduced from a 3 year plan to 2 years. We are currently waiting for him to have his stoma reversed and an abdominal reconstruction as he is now well enough to cope with the operation and be able to heal! Even though he has been through all of this he is a very happy little boy! His treatment will end in January 2023 and he is looking forward to getting his life back!