Max Provan

“I haven’t seen anything like it before. I don’t know what it is, but it’s definitely not cancer”. Words from a Urology Consultant, the third we had seen, that have stayed with us.

On Father’s Day 2018, while on holiday in Spain we found a firm, immovable lump in the muscle next to one of his testes. At 4 years old, Max had run out of the villa pool throwing himself naked upside down on the couch – everything fell forward revealing the lump. We would never have seen it otherwise, but immediately we instinctively knew. Max was born prematurely with sepsis, diagnosed with mastocytosis at 5 months followed by years of food intolerances and exceptionally poor sleep. We were on alert and medical research a hobby.

We went from airport to GP, immediately referred to Luton & Dunstable Hospital (L&D): the first consultant opined it was a cyst and to wait for the surgical team. The second did not know, but laughed alongside his junior doctor, when we asked if it could possibly be cancer. Over the weekend the lump grew in size. Still no pain. We returned to L&D refusing to leave until scanned. Three days later Max was given an ultrasound by the urology consultant who uttered the words that emboldened us to push for answers – if you don’t know what it is, then how do you know that it isn’t cancer? We asked for a second opinion and requested GOSH. Nine days later we sat with Consultant Nav Johal who took the time to listen. After another ultrasound Nav called in Oncology Consultant and leading rhadomyosarcoma expert, Olga Slater. In an urology waiting room, we were given his cancer diagnosis. Max was active, happy and his bloods showed no tumour markers – you would never know. Max underwent bloods, MRIs and biopsy under GA, a worry with his mastocytosis (risk of anaphylaxis).

On 20th July, Max had radical surgery to remove the tumour, now extending up and wrapping itself around his inguinal canal. We would later learn it was 4.5cm, just half a centimetre from stage 4. Had L&D delayed further we would be looking at a very different journey. After 45 stitches he was up walking like a cowboy the next morning with no pain relief, determined to go to the playroom!

Max had more scans, a bone marrow biopsy and his Wiggles (Hickman Line) fitted during which the anaesthetist gave the wrong anaesthesia for his masto needing a full body flush during the operation. She approached us in tears and we feared the worst – he was okay and we are all human. We then got the call to say the tumour had a clear margin. A rollercoaster of emotions.

Max started IVA chemotherapy 27th July and was horrifically unwell. Over the next weeks his surgical wounds became infected, he was bleeding from his Line and complaining of tummy, head and bone pain. He lost his hair. The tumour site swelled and filled with fluid. He underwent a PET scan at UCLH and developed a full body allergic rash to the radioactive dye. His team sat us down as the PET scan showed other lymph nodes were likely cancer. Unusually, the histology showed alveolar but the genetic testing was embryonal and we needed a second opinion. More surgery 17th August from which the lymph nodes were clear – his cancer had not spread.

Max completed his cycles of chemo dressed as a superhero, being infused with super powers and a dose of normality for a 4 year old! He suffered infections, allergic reactions, so much sickness and loss of bladder control but his body rallied and pushed him through. A lot of positivity and prayers.

During this time L&D wrote to us offering to remove the lump if it was bothering him. Had we waited for L&D, he wouldn’t be here. On 11th September the second opinion confirmed the first; it looked like alveolar under a microscope but was embryonal and did not carry the fusion gene. He got to ring the bell on the 22nd February 2019.

Thankfully, there has been no evidence of disease since finishing treatment. The chemotherapy also put his masto into remission. Max was diagnosed with ADHD a couple of years ago but he doesn’t let that or the after effects of surgery and chemo get in his way – he is super sporty, clever and funny and we couldn’t be more proud of him.