Jake's story
On the 19th January 2020, Jake, aged 4, started feeling ill after a football trial session in the morning. Danielle, his mum, said: “At first I just thought that the time of year meant he had a bug, so I phoned his nursery and they told me they had quite a lot of children off with a sickness bug. I kept him at home for a little while and hoped it would run its course.
“After a week of Jakey not feeling well, I was a little concerned as he had become really weak and lethargic. I called 111 and got an appointment with our GP. The doctor put it down to something viral, so we went with what he said. Two mornings later, Jake woke up saying he still didn’t feel well. I carried him downstairs as legs were too weak to carry him. He asked for his iPad, to which I told him it was right in front of him. He couldn’t see it. I then became really worried. I asked him what I was doing and he couldn’t tell me; he began to get upset.”
“I knew something was seriously wrong, so I rang 111 for a second time and while we were waiting for a call back, I started recording what Jakey was doing so I could show the doctors. After an hour we heard back and they told me to take him to A&E straight away. Eventually Jake was taken to have a CT scan. Shortly afterwards, we were brought into a small room and told that Jake had a marble-sized mass behind his eyes pushing on his optical nerves, hence his loss of vision and headaches. We were told that we were going to be blue-lighted to Great Ormond Street Hospital (GOSH) that evening.”
Arriving at GOSH
“When we arrived at GOSH, we went onto Koala Ward and they showed us the pictures from Jake’s CT scan. We saw that his tumour was bigger than we had originally thought, which was terrifying. The next day he had an MRI to look at the mass in more detail, and then just one day later, he was having surgery so doctors could do a biopsy of the tumour and try to remove some of the pressure that was being put on his optical nerves.
“Our surgeon was absolutely fantastic and such a lovely man. Everyone at GOSH is amazing, but I look back and can’t believe what he did. Jake was in surgery for eight hours which felt like such a long time. I saw the surgeon come out of the theatre and as soon as he saw me, his face just lit up; I instantly knew that he was pleased with how the surgery had gone.”
Going onto the Ward
The biopsy came back as Burkitt’s non-Hodgkin's Lymphoma, so Jake was moved onto Elephant Ward to start treatment. His first stay on Elephant Ward lasted three months.
“After the surgery, we went onto Elephant Ward and would still see the consultants daily as they weren’t sure how long it would take for Jake’s sight to come back. During that time, I found it very hard to do anything with Jake as he was just shut off from the world. He was so scared and couldn’t enjoy anything. He was so young and had been thrown into a world that he didn’t know.
“Alanna, our play specialist, got on it straight away. Alanna was so quick to adapt to what Jake needed – she was there from the very beginning and was just amazing.
“Elephant Ward is fantastic – and we spent most of our time there. They just knew Jake’s and my characters. I can’t thank Elephant Ward enough. It was hard, but it eventually becomes your new normal. We were there so long that we got to know the staff really well – they feel like our second family. He’s built a bond with them.”
Treatment
“With Burkitt’s, there are two treatment pathways, and Jake had the most severe one. The chemotherapy treatment he was given was so strong, but it was what he needed.
“In between cycles and due to the intensity of his treatment, Jake suffered with bad mucositis, bacterial and fungal infections, shingles, red man syndrome, sepsis, pneumonia and issues with his mobility.”
During his illness, Jake had 5 CT scans, 5 Echos, 5 X-rays, 14 lumbar punctures, 16 blood transfusions, 18 platelet transfusions, 3 ambulance rides and 155 sleeps in hospital (148 at GOSH and 7 at his local hospital).
Starting to get some sight back
“It was probably about March/April time when we first started thinking that Jake was able to see things a little clearer. He started having some music therapy sessions with Katya over Zoom and was able to see some of the keys on the keyboard.
“It then seemed to get better each week. He started noticing colours again. He still sometimes gets colours mixed up, but he can always see the basics.”
Looking to the future
“As of the 22nd August, Jake’s treatment finished. We had an end of treatment MRI scan on the 9th October. I was shown the very first scan and then the most recent – the comparison between the two was amazing! The treatment has worked so well; it was brutal, but it worked.
“Burkitt’s is rare anyway, but where Jake’s tumour originated is even more unusual, so GOSH wants Jake to come back for MRIs every three months. Usually, the tumours are in the lymph nodes or stomach, but Jake’s was in the brain so we can’t monitor it as easily. He still gets anxious now when he has to have procedures. When we go into GOSH for an MRI, we always ask if Alanna or another one of the staff members on Elephant Ward can come with us, as they do an amazing job of calming him down.
“Jake is due to start school in January 2021. He would have started in September, but with everything that’s been happening, I just wanted him to be at home and have some time together… The school have really reassured me as they have had other visually impaired children, so I’m feeling confident. Jake can’t wait!”
Looking back over the past few months
“The last seven months have been such a whirlwind. Now it’s come to an end, I feel a bit in limbo. The last months, I’ve been quite emotional. It’s really started hitting me how much he and our family have been through. It’s just so much, and I don’t know how we got through it. I can’t believe my little boy has been through all that.”
“I always try to find a positive within that negative – there will always be one! And once you find that positive, you view the negative differently. This helped me a lot through Jake’s journey – we got through it with positivity and laughter.”
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