Posted on Friday 11 September 2020

Sachin’s story: “I felt trapped to an extent”

Sachin, 17, was diagnosed with osteosarcoma in February this year and has since had surgery and chemotherapy during lockdown.

Sachin had been suffering with a pain in his knee and was going back and forth to the doctors for tests until one day, when he was on the way to France for a school skiing trip, his doctors had looked at scans and didn’t like what they saw so needed him to come in to the hospital. He rushed home to have a biopsy and a week later, he was diagnosed with cancer.

Throughout lockdown, Sachin’s teacher Alistair Robertson took on a challenge of running 1000km in 100 days to raise money for CLIC Sargent, who had supported Sachin and his family throughout his experience.

Sachin’s family is sharing his story to raise vital awareness of childhood cancer this Childhood Cancer Awareness Month and highlight what the past few months have been like for young cancer patients and their families.

“Around the 10th of December, he said he started experiencing pain just below his inside right knee. We started giving him things like ibuprofen and paracetamol and he was fine but he was still complaining after Christmas. So, we tried to book an appointment and around mid-January we got an appointment with the doctor. Because he played so much sport, the doctor thought it could be a rugby ligament injury, which would not be picked up by an X-Ray.

“So, he was sent off for a MRI. The scan results of the MRI came back and the radiologist at St George’s said that it was benign but as protocol they had to refer him to Stanmore. He then had another CT scan on the knee at St. Georges and then two radiologists again thought it was benign, nothing to worry about but we got a phone call from Stanmore around February the 14th.

“He was just off to his ski trip, he’d actually got on the bus and he was at Dover. We got a phone call from Stanmore saying ‘our radiologist has looked at it, we don’t like what we see and we would like to do a biopsy’. So we actually pulled him off the ski trip at Dover. He got off the bus and he got the train back to London, he was ok about it because two radiologists had said it was benign but let’s make sure.

“Then, a week later we went to Stanmore they did a biopsy, a week after that it came out that it was cancerous and March the 3rd treatment started. It all happened very, very quickly.

“We got the news on the Monday, I sat him down at home and said this was the news and he said ‘I had thought this may be it’. It’s such a matter of fact thing that it is, there’s no arguments about. The biopsy is a 100% the only way to make things sure.

“I don’t know whether he cried in his room or anything. He’s a very bright boy, he did get straight 9s in his GCSEs, he’s head boy. I’ve seen him getting frustrated now as he’s on crutches. The family have spoken, when we get a chance, about dying which we never touched upon and he says I don’t want to die but I know it’s a possibility. He’s a mature boy for 17.

“He’s had treatment right from the treatment plan from the start, nothing has changed. He’s accepted chemo reasonably well. We’ve had decent results – the margins are clear and 80% of the tumour had gone after two cycles of chemo.

“It’s ten weeks and then week number eleven you have surgery then you have a week off then you start cycle number three. Then the fourth cycle is five weeks later so it’s just a continuous process. It’s six cycles of chemo and surgery and then they offer you immunotherapy and that’s 48 doses he has to have. The first twelve weeks is twice a week during his chemo and then the last 24 weeks it’s once a week so it will go up to the end of January. So his chemo will finish around 25th of September, if there are no delays and then the immunotherapy will carry on until January, February next year so it’s like a whole year out in life.

“The only time I really saw him cry was his third cycle of chemo. You get haemorrhoids and mucositis so for two or three weeks, he couldn’t move, he couldn’t poo, he couldn’t eat so that was awful but we’ve got through that and we’re hoping the fourth cycle isn’t as bad.  It’s a tunnel and you just have to go through it and get to the end. I don’t think we’re a particularly brave family, it’s not a choice it’s just having to be practical getting him there on the times he needs to get there. We can kind of support him but it’s really his battle.

“All through this he’s been doing his school work, when he misses he catches up. He wants to study Mathematics at Cambridge or Oxford and he is in that league. He did get ten 9s and he was predicted four A*s before all of this happened but he’s kept up with his Maths and Physics. Of course he can’t do it on a weekly basis but he catches up. The school and his friends have been incredible – we have lockdown but they come over to see him social distanced, they sit in the garden. The support we’ve had has been quite incredible.

“The school is something just very special. There are teachers like Alistair Robertson and all of his other teachers, like a total blanket around him. Nothing’s been too much trouble for anybody, it’s just been quite revealing. You take people for granted and then you realise they’re there for you.

“When all of this started they thought he was a vulnerable patient but they’ve taken him off of the shielding list. If everything sticks to timetable without delays or anything then we hope last week of September, first week of October he will be back in school. We are not sure how he will be able to cope with five hours of concentration because the chemo effects stay on for a while, he’ll still be having one day a week of immunotherapy but we’ll have to work around that. I’ve given him the option to re-do lower sixth if he wants or take a gap year but he doesn’t want to do that, he wants to give it a go if he can. Just take it as a bump on the road and see how it goes.

“The lockdown – it’s horrible to say – but it has been beneficial for a number of reasons, one is because we have to do ambulatory care three times it means we can get there in 35/40 minutes because of no traffic on the roads. More importantly, from a very selfish point of view, is that he hasn’t fallen too behind his school work because the school has been shut since March 23rd. They have lessons online, which he can keep up with so he’s been like every other child stuck at home. He misses his friends and he misses school terribly but he would still miss them even if he hasn’t had this because you’re all supposed to be in lockdown for three months. It’s worked out ok.

“His brother is down from Liverpool university because they closed down as well – we’ve gone through 66 episodes of the boxset of the Sopranos, we made a point that we only watch it when all four of us are together so we’re now on the last series. They do their lectures and homework but after dinner over these three months we all get in and sit, it’s time to spend together. We haven’t watched one single episode if all four of us weren’t there. Sometimes when you’re in week two or three after the first week of chemo it just feels like everything is normal, he’s laughing, we’re as a family and it’s quite nice and you quickly forget what’s been going on.”

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