Jeremy’s story: “Hes got two sisters and they can’t visit at the moment, it’s just one parent at a time”

Jeremy, 12, was diagnosed with osteosarcoma in March this year, just as the country went into lockdown. He has only been allowed one parent on the ward with him at one time and has missed seeing his friends and family.

So far, Jeremy has had chemotherapy and surgery and is now set to have more chemotherapy.

Throughout his journey, Jeremy and his Dad decided to make a video to document what he has been through and raise awareness of childhood cancer. Jeremy is sharing his story this Childhood Cancer Awareness Month to shine a light on what the last few months have been like for young people with cancer.

“He was diagnosed with osteosarcoma, cancer of the bone, on his right leg in the middle of March this year. He was complaining of pains in the knee and the ankle so we were in and out of the GP surgery for a while and they didn’t see anything they said ‘you know boys, maybe he’s twisted it’. Jeremy would cry in the night and we were just told to give him paracetamol as pain relief.

“One day I couldn’t take it anymore and I went to the surgery with him and they referred us to the big hospital – we live in Slough – there he went for an X-Ray, we had had one already in February but it said negative so we went back again in March and the doctor said no he will need an MRI, which we requested because of the way he was complaining. They asked us to go for MRI and there they realised there was something wrong with his leg so they checked the bone and they referred us to Oxford.

“When we came they did a biopsy and that was when they realised this has become high grade, they said it was high grade bone cancer. The plan for him was chemotherapy, surgery, chemotherapy so at the moment we finished the first two chemotherapy and then surgery – he had his femur cut off and a device has been put in the leg which is now being helped with the physio, anytime he comes for chemotherapy. We just started with our third plan, which is the chemo.

“The sad part of it is we thought the treatment would be ok to kill the cells but they realised the bone is destroyed so they just have to take it off and you know, a part of him has been taken away and you know how important legs are. That made my boy cry, we had an emotional time.

“We have a happy time looking forward, we have a supportive family system. We decided to stay together in this. If we are not in the hospital we have a family catch up, which really helps Jeremy because he’s not been left alone, he can see everyone be supportive. This time as there is covid no one can come to your house; no friends, you can only communicate on social media or maybe a zoom and see people but not people coming as he was asked to shield because he was vulnerable. He became so emotional as he cannot do so many things – we are all quarantining at home because of covid.

“It has been up and down. Treatment has not been easy for Jeremy, travelling all the way from Slough to Oxford. Family wise he can’t see his sisters. He’s got two sisters, one is a year and eight months and the other one is eight years old. They can’t visit at the moment, it’s just one parent at a time and they can’t come in so they only see him when we get home, that’s about three or four days after treatment when he’s feeling better. Sometimes we get home and two days his temperature is so high so I have to rush him to the hospital and so he’s been in and out of hospital and that alone sometimes he thinks I’ve had enough but I say ‘you can do this’.

“First of all it was a shock like I said, the GP never saw it. He had been in and out and was being referred to physio because they thought there was nothing wrong, not knowing there was something going on. As a child he didn’t know – I didn’t know he was going through that trauma. I’m grateful to the doctors here in Oxford because they looked at him and they said that he has to have his quality of life back. So instead of taking the whole leg away what they’ll do is they’ll put a device in. They did a very good job.

“Jeremy has never been in the hospital before, we all had chicken pox at home but he never got it so I see him to be somebody who is strong and fit and when we were in and out of the GP they didn’t see anything even when he went for X-Ray they never saw anything. He did blood tests. I said to Jeremy were you waiting to be 12 to surprise me because we’d never seen him ill.

“In terms of our social life everything has come to a stop, we just have to ensure that Jeremy is well, he gets what he needs to be able to focus and adjust in a positive way.

“Because of covid you can’t even speak to parents on the ward, everyone has to cover their faces. It’s a different environment where you can’t even talk to people and share your story or seek advice. It is really disturbing. And now they’re going back to school, he can’t go. When you’re at home because of the environment you don’t really feel like learning much – he gets on well, he has to take it to hospital. We’ve been given one of the teachers in the ward to help us, we are getting support from other expert professionals who are also helping with Jeremy.

“He was diagnosed a week before lockdown. They said they were looking at only those with covid and those with high temperature and that day we’ve never had a male reception at our surgery but that day a male took the phone call and said you come in, me and my husband rush in there and we were there to request an MRI scan and that was when the GP wrote a referral note to go to Oxford because Jeremy’s X-ray and MRI were not good so immediately he referred us and he started treatment in April.

“I remember that day we came with Jeremy and at that time – 27/28^th of March – we came in and they said ‘one parent at a time’ so my husband was asked to stay out and I went in but the doctor said ‘did you come with anyone?’ and I said yes my husband and he said ‘I’ll go and get him’ and he went to get my husband and I realised it could be something bad, we never thought it was cancerous. When we sat down they said ‘I’m afraid I have to tell you that your boy has cancer’, my face dropped and I didn’t know what to do. I was like ‘how? When? What happened? We have to see him getting sick or something’ and the doctor said to calm down and I said to my husband this isn’t the time to ask when how let’s see how best they can help our boy, let us ask them what they can do for us at this moment, in this present time when there’s covid and everything. We have two girls we left at home with a friend.

“They said it’s no fault of yours because it’s not something hereditary. Sometimes we don’t read about it because we think cancer, it will never happen to you. Jeremy said he wanted to be part of the meeting so he was there when they said it and he started crying and said is he going to die? When you mention cancer people think are you going to die, no matter what. Jeremy was crying and then after he says ‘am I going to die’ and immediately I saw him googling, checking on the internet what osteosarcoma is. Then after he said if I have treatment am I going to lose my hair? I said ‘yes you will lose your hair’. After the doctor said shall we continue with the meeting and we said yes and he said ‘what we can do for you is put you on this treatment, we do chemo to reduce because it was so swollen, the knee part was swollen’ as we came in for the diagnosis it was swollen and he couldn’t straighten it, it was curved and he was limping on it. So they said we will start treatment which will reduce the swelling and then we will do the operation and after the operation, we will do more treatment.

“He’s had side effects, he has sores in the mouth, he can’t hear properly – we went to the department and he was tested and he cannot hear high pitches that are very close to him. I think it’s because of the treatment. He had black spots on his tongue, he’s lost his hair, nails have changed colours. His surgery went well, that was about six weeks ago – they put his leg in a cast and last week they took it off and put a brace. He’s taken a few steps at a time.

“Jeremy felt the treatment was difficult and makes him feels as if his organs are popping out, vomiting and high temperatures he mostly gets because his neutrophils is low and the fact that he spent most of his time in the hospital trying to get better. Jeremy hope to gets better one day.

“Sometimes the fear of him not being able to breathe is terrifying but he always looks at the positive side as he believes that there is more to accomplish in life and so much to achieve. He said it always uncomfortable testing for Covid19 as a routine in the ward and all medical team covering up to keep him safe. He some time wonder how the staff look like behind the mask??

“He’s got up to December [on chemo] and then the doctor will introduce a new drug which he said works the immune system for future reoccurrences, which he said we should look into and if he takes it that means he will finish next May 2021.

“Our CLIC Sargent social worker Grace has been very supportive, introducing us to charity organisations. She has been able to speak to my employers regarding this furlough so I can stay with Jeremy. She’s tried a lot of charities that help with money, they introduced and advocated on our behalf. Whatever we tell her she tries to help as much as she can.