Lewis' neuroblastoma story

It started with a terrible wheeze

Lewis was taken for a hospital appointment for a wheeze two days before his first birthday. I had been taking him back and forth to the GP’s since he was six weeks old, with what they assumed to be reflux.

Lewis would vomit after feeds and it was much worse at night. His wheeze was so bad that sometimes it sounded like he couldn’t breathe properly.

I was told the wheeze wasn’t a concern, but after ten minutes in the paediatrician’s office, she had found a lump in my baby’s tummy. I could even cup it in my hand. I was so shocked that I hadn’t noticed it before, as I had never sat with him facing out before!

I was told what they expected the lump to be. I was on my own as I’d told my partner not to worry about missing work as it was only an appointment for a wheeze. It was incredibly unexpected and scary.

His tumour was 13cm

This all happened on a Thursday morning and the following week we had appointments for an ultrasound and oncology consultation and then the following week Lewis had his central line inserted and chemotherapy started.

The tumour was a massive 13cm when found and then shrunk to 6cm. However, it then stopped responding to the chemotherapy, so his treatment was changed, but that proved to be ineffective also, which was concerning.

As the tumour seemed stable, we were put on watch and wait. Lewis’ tumour seemed to shrink a few millimetres by itself after chemotherapy ended and we were over the moon that our baby was in partial remission.

More shocking news

Due to the position of the tumour, an operation was not on the cards as this risked losing a kidney and possibly damaging the other so badly that it would results in total loss of kidneys. This was to be avoided as much as possible.

Sixteen months passed of having three monthly MRI scans and Lewis remained happy and healthy, full of life and energy – or so we thought.

In October 2019, Lewis had his final three monthly MRI scan which was going to transition to six monthly after this. His scan showed that his tumour was still stable. It hadn’t grown, but it hadn’t shrunk anymore either.

However, on the opposite side there was a new growth. He now had two tumours in the same place on either side of his abdomen! It was such a blow to receive this news, as we thought that this terrible ordeal was almost over.

Continuing treatment

Lewis had his central line inserted again and re-started chemo in November 2019. We had everything crossed, but unfortunately the new tumour also didn’t respond to chemo, but it didn’t get any bigger.

Lewis had radiotherapy at the end of February 2020 into the first week of March. We are currently waiting for an MRI to see how this has worked. Lewis has just started his first cycle of Retinoic acid, of which he’ll have six cycles in total. This is a capsule taken at home with bribery! A spoon full of sugar really does help the medicine go down!

Lewis has recently also got over COVID-19. We spent two days in hospital. He suffered a high temperature, back pain and tiredness. Lewis also stopped eating so I can only assume he lost his sense of taste and smell just like I did.

Looking to the future

The future for Lewis is still unknown. His consultant is very optimistic and we are hoping that the radiotherapy will work as an operation is off the table given the way the tumours have now grown.

If the radiotherapy hasn’t work, the next step would be high dose chemotherapy, although the consultant has already said he doesn’t think this would make a difference as Lewis has already been on three different combinations that didn’t work. At the moment, my boy seems to be blossoming well. He has always coped so well. He really is a superhero.

Lewis tells me he is going to be a “driver” for emirates when he’s bigger. If this is still his dream when he is older, I intend to support him in anything he wants to do. Lewis’ journey began before he was one and he continues on it now. He’s missed out on so much, built confidence and lost it just as quickly. Missed out on making those first friends, play dates – things that ‘normal’ families take for granted!

Updated in April 2020

Update: October 2020

Lewis has now finished all treatment and we are on a ‘watch and wait’, keeping our fingers and toes crossed that nothing grows and the two tumours stay stable forever.

If there is any growth, the only answer would be an operation to remove the tumours and kidneys as the consultant believes that chemotherapy will no longer work and they can’t give radiotherapy more than once.

Lewis has had his central line removed now too. He started preschool in September and is doing very well. His confidence is growing by the day and I have no doubt that one day he will follow his dream of becoming a pilot or working with planes – just like his dad.

Update: January 2021

Lewis is currently doing very well, the tumours maybe pressing on a few fine nerves which causes him to experience stomach pains but as the pains are not constant there isn’t really much that can be done about it.

He still tires before his peers but he blossoming well and I am very proud.

Update: April 2023

Lewis was thriving until his three monthly MRI Scan in November 2021 where they picked up another tumour in his chest. He underwent tumour removal surgery in December which was successful. He had to have some radiotherapy to the chest area in February 2022.

Since all of this Lewis is again thriving, he still has three monthly MRI scans and is due for his next in May. Our fingers continue to be crossed that there is nothing new. The two tumours in his abdomen are still thankfully stable.