On Mother’s Day 2022, we received the devastating news that Our 12-year-old handsome, young, strong, brave superstar was diagnosed with T-Cell Lymphoblastic Lymphoma cancer

With symptoms of chest pain, progressive breathlessness even at rest, and rapid weight loss, he was reassuringly dismissed by various doctors at the local GP practise; a total of 7-times. Do nothing and wait for a referral appointment in 4-weeks, was their repeated advice. Unhappy with this and his continuing deterioration, we took him to the local A&E. An x-ray confirmed that a massive tumour had collapsed his left lung and was compressing his heart and windpipe.

He was rushed to Great Ormond Street Hospital the same day, where immediate treatment commenced. Too unstable to tolerate general anaesthesia; he braved the painful insertion of a chest drain and central line to his arm to administer chemo.

The Great Ormond Street team advised us that we were perhaps 2-days ahead of him losing his life to the tumour, and that we had done the right thing to ignore the GP's advice – which was to wait for a paediatric referral in four weeks’ time.

His treatment plan has now been finalised as 2.5 years of very intensive chemotherapy, which has been extremely painful and debilitating. Endless medications multiple times a day, regular lumbar punctures as well as almost daily intravenous chemical concoctions. The suffering he has experienced has been horrendous. There are no words to describe the pain we have felt watching him having to endure so much psychologically, as well as physically.

Physically, he has suffered unending debilitating and painful effects and endured extended stays in hospital battling covid, sepsis, shingles, and serious blood and fungal lung infections, all of which are life threatening given that the chemo has poisoned his immune system to zero in the hope that the tumour does not return. Heavy duty antibiotic/antiviral/antifungal combinations are added to the chemical cocktail, each with their own set of side effects, to manage the infections.

The intense nausea, sickness, and pain he endures-ongoing daily, is difficult to bear witness to. The times bravery has escaped him, even more so.

We have recently been advised that, given it's T-cell for a boy diagnosed over 10 years old, his overall survival chances over the next five years are 70%. However, if he relapses, the survival rates plummet. As parents, these are sobering statistics. We also know that stem-cell treatment can drastically improve the chances for long-term survival, but here in the UK, it is not offered unless it's a last resort, which can sometimes be too late. Therefore, we would like to raise funds to maximize his survival chances, mitigate against relapse, and fund additional alternative medicine options to help repair the damage caused by long-term exposure to toxic chemotherapy, as well as the numerous additional medications that have been administered.

His family would like to thank everyone that has provided support and encouragement, raised money for Great Ormond Street, and the many simple acts of kindness given, often from the most unexpected people, including strangers and especially the london black cab drivers that insisted on Lew riding for free to Great Ormond Street Hospital and a couple of other destinations as well.

Thank you for reading Lew's story and for any and all support.

More information regarding T-Cell Lymphoblastic Lymphoma:

https://www.macmillan.org.uk/cancer-information-and-support/lymphoma/lymphoblastic