Caleb is a triplet and was diagnosed with an ATRT brain tumour in February 2019 just 4 weeks after his 3rd birthday. He had no big signs of sickness until one day he vomited. Over the course of 4 days, we went to different doctors and hospitals and on the last day, we stood our ground and begged them to scan him as he kept complaining of a headache. They discovered he had a mass in his right frontal lobe. It was removed with a total resection and after 10 days the biopsy came back with his diagnosis.
Living in the UK, we were told Caleb needed proton beam therapy along with his chemo. We flew to America and spent 8 weeks receiving proton therapy alongside chemo and then once home he completed a total of 12 sessions of chemo.
Life was really hard having three 3-year-olds with one who was really sick, but we got through it with the help of family. I can now say after 1 year of treatment, Caleb is now doing well and had his first 3 monthly scans which showed NED. He will receive another scan every 3 months. The next should be in May.
We are so proud of our son and everything he has endured to be here. He was born at 27 weeks and has fought his way through life. His sisters are incredible and have helped him through so much. They say multiples have a bond and I feel our triplets have certainly got that.
Updated January 25, 2021:
Caleb started the trial drug tazemetostat and had his first scan Nov 2020 which showed no new growth. We were so happy to be able to plan Christmas when just a few months before (June 2020) we were placed on palliative care and given no options...with the prospect of not seeing Christmas. Thank goodness we fought to give him this drug. His latest scan was January 18th to see how he is responding to this drug. The results show NO NEW GROWTH!
This Christmas (9 days before) Caleb contracted meningitis from an ear infection he fought for 3 days in ICU and needed lumbar punctures and blood work to find out what was wrong. He had an extremely high temperature and nobody could determine what was wrong until tests came through.
It was very serious and there was a crash team involved as his heart rate went so high. It was such a worrying time not only because of the meningitis but because he had to be taken off his tazemetostat, the one thing that was positive in our life - to keep our precious boy alive. However, after day 3 and course of antibiotics of 4 weeks (we are currently on week 3) he is doing ok.
There is still a pocket of green fluid in his ear and doctors are not sure where it has come from or what it is. They are trying to determine whether it came from the tazemetostat as a side effect but so far results are inconclusive.
Our worry is the meningitis comes back from the fluid. For now we live in wait on what our next steps are. It's a worrying time but we just hope things go in the right direction.
Seeing Caleb turn 5 after these past 2 years is incredible. He was diagnosed with ATRT just 4 weeks after his 3rd Birthday and despite relapse last June he is still here fighting. We are incredibly proud of our little superhero and of all his achievements despite the mountains he has to climb every day. He even managed to start nursery with his sisters last October, something we thought we may never see.
Never give up hope as with ATRT our children create their own path and show us the way.
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