No parent ever wants to hear that their child has cancer, but that was the reality for Coads Green mum Jennifer when she was told in summer 2020 that her little boy Kaston had leukaemia.
When it comes to articles, we love to put them together ourselves. But after receiving this powerful piece from Coads Green Primary School, Kaston's school, which is written by Jennifer, we just had to let her tell Kaston's story in her own words.
So find somewhere comfy and read on about this amazing little boy.
On the 23rd of July 2020 I got the news no mum wants to hear.
Kaston had leukaemia and honestly I couldn’t think straight - all I kept saying was no, no, no, why are you saying that? Stop saying that, he is in that room fine.
Then it hit me and I burst into tears and said, 'I’m not going to lose him, am I? He isn’t going to die - I’m a mum to three, I can’t be a mum to only two.' Shock had well and truly hit me. I had so many questions and the next 24 hours seemed to go so slowly but so fast too. He was immediately hooked up to a drip for fluids and platelets. We were told we needed to go to Bristol that very morning and that we could be there weeks or months, it all depended on how well Kaston responded to the initial intense chemotherapy treatment. While driving up there, Kaston was asleep and I had no idea what to expect. I was beyond sick with worry. We got there and I was pretty much dragged into a room to be told what would happen and when I was taken back to Kaston, in true Kaston style he was sat there with a few nurses bringing juice and pizza to him! He had no clue what was happening but completely took it all in his stride telling me he would be fine and not to cry or worry. He was immediately hooked up to platelets and a blood transfusion because his levels were that low. Then the reality of what was going to happen really hit me. Kaston needed daily chemotherapy.
He needed to have a port fitted into his chest to have all the medication administered that way and it will be with him the whole time of his three-and-a-half-year treatment. The play ladies came into the room with a teddy to show him what was about to happen, and he was so interested in it, asking all sorts of questions. I was also told that he would have a lumbar puncture and a bone marrow test while in theatre. Again more medical terms that I had no clue how to explain and started to panic and think, 'how will I get used to all this information'?
While Kaston was in theatre, I was being given more leaflets, treatment plans and information bearing in mind I was doing this all alone during a national pandemic. I was called to theatre to say he had come around. I was so desperate to see my baby boy’s face.
He showed me his new port etc and nothing could have prepared me to see what I saw. I fainted and all I could hear was Kaston saying, 'Look after my mummy, she is all I have'. Even in his worst time he was still thinking of others.
We spent a month in Bristol before being discharged to go home and I had to take over the home mediation. To say I was terrified was an understatement - how could I be trusted to give all this medication to him? I wasn’t a nurse! I asked the nurse to go through it several times.
Kaston became quite a character on the ward and all the nurses loved his smile and attitude to something that was so horrendous. Kaston’s school and parents were incredible - they sent cards and presents to cheer him up and it didn’t go unnoticed by the staff.
We came home and knew we had three more intense stages before we reached maintenance and that’s when life is meant to get back to some sort of 'new normal'.
Since July 2020 to March 2021, Kaston has been in and out of hospital for weekly chemotherapy, blood tests, lumbar punctures and injections which are all part of his treatment. He lost all his hair, then it started growing back, then he lost it again and finally it’s now grown back 12 months later, but it can start to fall out again at any moment. Kaston has had his struggles on steroids - they can make him feel so angry, anxious, tired, in pain. He has to take vincristine once a month alongside the daily chemo he has at home. Kaston was desperate to get back to school in March 2021 and nothing was going to stop him. So far so good. He still has weekly bloods, daily chemotherapy, monthly vincristine, steroids and lumbar punctures every 12 weeks. If at any point Kaston isn’t well or spikes a temperature, he is in hospital for a minimum of 48 hours for antibiotics and bloods via IV. He suffers with terrible sores in his mouth but thankfully that’s not too bad now. I’m told he is doing well at school and he is always happy and doesn’t let the cancer get him down. For example, he was in hospital recently for an ear infection and despite being tired and in pain and told to stay at home he was determined cancer wasn’t going to stop him! On days like these you wouldn’t believe he has to be held down - at times he has screamed the wards down in pain as his legs are so sore, he can’t walk or run. You pace the theatres worrying something will happen or panic one day it may come back. Kaston has had so many ups and downs and they will continue for some considerable amount of time yet but you can’t deny he is a fighter and I’m in total awe of him. His school have been incredible for Kaston, his two sisters and me! We try to see all the positives amongst all the negatives cancer brings you and on his upcoming 1 year anniversary since diagnosis he wants to go to Diggerland. We have to make the most of what he had as it could have been very different story and I thank God he is still here fighting. I just wish more understood this cancer and it had more funding. One thing that will stick with me was in Bristol when Kaston asked, 'Do I have cancer? Will I die?'
In that moment my boy decided he was going to fight and keeps doing so each day.
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