Teddie's story

Teddie was diagnosed with a Wilms’ tumour in 2017 when he was 14 months old. His mum Sade tells their story so far:

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A hard lump appeared over night

I first knew something didn’t seem right when a hard lump appeared. It was located on Teddie’s hip. We took Teddie to the hospital and the doctors were immediately concerned. The lump was rock solid and from the doctors reactions, as well as my own, it felt like something was very wrong.

The doctors said it could be a tumour and they took some blood samples. They also scheduled Ted in for an ultrasound the next day so they could look at it properly.

The ultrasound confirmed that it was a cancerous tumour and the whole terrifying process started. Teddie was transferred to hospital for more testing, including a biopsy, which would help with his diagnosis. They took a sample of his bone marrow and gave him various scans to get a better picture of his tumour. They decided to start him on chemotherapy  not too long after, fitted him with a Hickman line, and a few weeks later, they had the results of the biopsy.

 

Teddie in hospital scaled

We received a really worrying diagnosis

We were told that his tumour was a desmoplastic small round cell tumour. I’d never heard of it. The doctors were very concerned about this, as they said it was a very rare type of cancer. The biopsy had revealed that it was at a very late stage, possibly stage four. As far as they knew, there hadn’t been anyone as young as Ted who had had it. They expressed to us that they hadn’t really dealt with it in the UK and they thought they’d have to seek advice from doctors in America. Because Teddie was so small, they had to think really carefully about how to treat him and how much chemotherapy he was able to handle at his age.

Chemotherapy started and Ted was out on five different types. It was an awful process to watch him change so much. He lost weight, had dark circles under his eyes and his fingertips and toes were really dark and brittle. I asked the doctors if this was normal and they reassured me that it was. His hair falling out was a really hard day too. Every few hours another clump would just fall out. It felt like by the evening he only had a few strands left.

The doctors were really positive about the results of chemo, but for me, looking at my little boy, I felt so helpless. He couldn’t tell me how he was feeling and I found that so hard. He looked so tired and drained of everything.

Teddie during treatment with ice cream scaled

I was so scared on surgery day

The scans revealed that the chemo was working and the tumour was shrinking. It was time for surgery to remove as much of the tumour as possible. Just before surgery however, the doctors discovered that the cancer had spread to Ted’s lymph nodes in his stomach area and they were worried of the possibility of it moving further up into his chest area lymph nodes, which they wouldn’t be able to remove with surgery. They decided to go ahead with surgery to remove the original tumour, which would then be followed by more chemotherapy and some radiotherapy.

The day of surgery was incredibly hard. He was in there for five hours which felt like five days. Putting him to sleep before surgery was the worst part, and although we’d done this before for some scans, it felt different this time as the procedure was so big. Holding your limp child in your arms for what could be the last time was traumatic.

Luckily the surgery went well and they told us they felt they had got everything. They had to remove his right kidney because the tumour had destroyed it. They were going to send the tumour off for testing to confirm his diagnosis. When the results came back we finally learnt that he had a stage three Wilms’ tumour and not a desmoplastic small round cell tumour as was originally suspected. This was a relief because it meant they knew far more about Teddie’s cancer, as they were no longer dealing with a rare type.

Teddie and Sade scaled

The journey to recovery wasn’t over yet

Teddie continued his chemotherapy for another seven months. He was able to come home a lot more about a month after his surgery. He started radiotherapy every day for about a week. They explained some long term side effects of radiotherapy such as possible infertility and growth problems. It felt like it was never going to be over and we had more to consider about how he could be affected later on in life.

Teddie had some issues with his treatment. He had a severe allergic reaction to one of the chemo drugs he was given which caused him to go into anaphylactic shock. Another time, he reacted badly to a round of blood and platelet transfusions and his whole body swelled up. It was terrifying to watch.

However, by January, he finally had his last chemotherapy and was able to ring the end of treatment bell. That was a completely overwhelming and surreal moment. I couldn’t believe we had finally made it!

 

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Where we are now

Teddie is nearly three years off treatment and he’s been having check-ups every three months, which consist of ultrasounds, X-rays and heart echoes.

Thankfully, there’s been no sign of a relapse and no further complications. He looks like a completely different child now. You would never know by looking at him that he had cancer. He’s doing so well and is so bubbly and happy. The scar from his operation has also greatly reduced in size as he’s grown so much.

Personally, I struggled when Ted finished his treatment. For so long I had been on autopilot, fully focused on him getting better. However when treatment ended, I was thrust back into normal life. I found it really difficult to not worry about Ted’s health as I wasn’t surrounded by nurses and doctors.

As we have got further away from treatment, I have gradually felt better and have worked on all the emotions I experienced during and after that crippling time. We celebrate every milestone and year that passes and I’m so proud of how far he has come.

Today Teddie is a happy four year old who loves being outside riding his scooter or bike. He’s started school and is so eager to learn. He’s incredibly sociable and has made so many friends. We feel blessed as a family.

October 2020

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How you can help

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