Tea & Biscuits in Manchester – Part one by Jeff Ditchfield

Our teenage years are a very important part of our lives, schooling, friendships, families and forming relationships are the trials that turn us from teenagers into adults. When I look back to my early teens I recall that I was a pretty normal teenager, at the time everything to me was a drama or a crisis and I always seemed to be fighting something or someone.

At that age I really doubt I could have fought a life threatening disease like cancer and yet here I was about to interview the 13 year old cancer suffering son of one of my music hero’s Paul Ryder of the Happy Mondays.These thoughts passed through my mind as I sat in the front room of Chico’s Grandmother’s home on the outskirts of Manchester, UK waiting for Chico and his Mum Angela.

Angela, can you please tell us about how you discovered that your son Chico had cancer?

Angela: “In November 2012 Chico came running out and said; “Mum I’ve got this really big thing at the back of my throat, he was laughing and saying look at this. He had complained previously about a bit of a sore throat and when I checked I noticed that one of his tonsils was inflamed. But we were all going away for a couple of days on a trip and it didn’t seem serious enough to stop us; I’ve always been very laid back parent”

So you weren’t worried about it then?

Angela: “No not really, we went away and I still thought it was a mild throat infection but the inflammation was still there; I’d been checking it every day but after four days I thought I should get it checked out and perhaps he needed some antibiotics. We went to see a nurse practitioner at our local pharmacy who seemed quite surprised, she said she’d never seen anything like it before, I remember asking her “you don’t think it could be a tumour do you?” She told me I was being ridiculous! Chico was prescribed a course of antibiotics which didn’t really work so we went to see our Doctor, his view was that the pharmacy had prescribed the wrong antibiotics, and Chico was given some really strong ones.”

“Three days later, this thing was still there so we returned to the surgery and the Doctor said that Chico could have glandular fever, so they tested Chico for it, and later that day the surgery called me to say “it’s good news all the tests have come back negative it’s not an infection and it’s not glandular fever”. I thought no, that’s not good news and I demanded to speak to the Doctor, he didn’t realise we’d had the test results and he wanted to see Chico immediately, the concern now was that Chico could have lymphoma”.

“We were referred to a head and neck specialist who authorised a couple of scans and then we were told that Chico had to have one of his tonsils removed and biopsied. After the operation the results of the biopsy was “it’s definitely not lymphoma; it’s probably just some rare infection”. However, it didn’t go away and Chico was being sick all the time…”

How old was Chico at the time?    

Angela: “All this was just before his 11th birthday coming up to Christmas 2012. The specialist who operated and removed Chico’s tonsil said that he thought there was need for a second opinion and referred us to UCLA’s internationally renowned Comprehensive Cancer Centre in Los Angeles. I thought this was unnecessary as the results of the biopsy had been fine, but the head & neck specialist at UCLA told me that unfortunately the original doctor had biopsied a healthy piece of tissue and that it was a tumour pushing the tonsil forward. The doctor who conducted the tonsil extraction had extracted the tonsil and biopsied that, rather than extracting a part of the tumour for the biopsy.”

“This was 5 days before Christmas 2012 and Chico was admitted immediately, as the medical opinion at UCLA was that without treatment my son only had 10 days before the tumour would have completely blocked his airway. I was distraught, at this point the tumour was growing out of his neck and wrapped around his carotid artery which was causing his heart rate to be all over the place. It was heart breaking to see him in hospital wired up to monitors and every day he was getting sicker, it took 8 days to get the results of the second biopsy and Chico started chemotherapy that very night.”

That must have been a terrible Christmas for you, how did you and Paul feel?

Angela: “For those eight days we didn’t know what to expect, we knew it was a tumour but we had no diagnosis. We ended up hoping that it was lymphoma because the specialists at UCLA advised that if it was then there was a treatment plan that was well tolerated with a good prognosis and even though we dreaded the results of the diagnosis we knew that if it was lymphoma it would be treatable.”

What was Chico’s eventual diagnosis?

Angela: “It was a condition I’d never heard of before, Parameningeal Embryonal Rhabdomyosarcoma (RMS) stage III. The oncologist said there were two types of RMS, one is more aggressive than the other but the treatments are the same. Due to the rapid growth in Chico’s tumour the Oncologist told us (Paul & Angela) that the disease had to be treated aggressively and Chico started chemotherapy that night. One week later, further scan results came through and the Oncologist reassured us that the cancer hadn’t spread”

NOTE: Embryonal rhabdomyosarcoma (ERMS) is a rare histological form of cancer of connective tissue wherein the malignant cells resemble the primitive developing skeletal muscle of the embryo. It is the most common soft tissue sarcoma occurring in children

The prognosis for rhabdomyosarcoma has improved greatly in recent decades, with over 70% of patients surviving for five years after diagnosis (source: www.wikipedia.org)

That must have been a very difficult time, what was the chemotherapy regime?

Angela: “I remember it very well, the first chemo was on my 50th birthday so instead of having a big party for my friends and family there I was sitting in a Hospital at midnight watching my son having his first chemotherapy session and I recall thinking that is not what I had planned, it was a very difficult time for me and Paul and indeed the whole family. Six days later it was Chico’s second chemotherapy session, coincidentally it was his 11th birthday, so we held a small party in the hospital room. Because the actual tumour was inoperable the chemotherapy regime lasted for 43 weeks and involved three different types of chemotherapy drugs, it was really debilitating.”

“Chico was in a wheelchair within two months of starting chemo and he’d only just started to use his wheelchair when the Stone Roses came to play at Coachella and Ian Brown invited us along. Chico was able to hang out backstage and Ian even dedicated a song to him and gave him some shaker bells, we had a great night. Chico actually fell down the steps of the Stone Roses trailer as the steps were a little bit shaky and he ended up with a suspected broken ankle, but despite this Chico had a great time too.”

Was Chico always admitted to Hospital for his chemotherapy?

Angela: “The weekly one was carried out at a local clinic which Chico attended as a day patient and every three weeks he was admitted to hospital for the more aggressive chemotherapy drugs. As regular as clockwork nine days following the chemotherapy administered in hospital Chico would get a fever and neutropenia and we’d have to return to the hospital for treatment. For the best part of 2013 we were in and out of the hospital, we spent as much time in medical establishments as we did out.”

What is neutropenia?

Angela: “It basically means that he had no white blood cells to fight infection and as a fever is a sign of infection it was therefore very serious and potentially life threatening. Chico had this happen 13 out of the 14 triple chemotherapy infusions which meant he was always hospitalised between every chemotherapy for several days as well as for the chemotherapy itself. In total he had infections on 5 occasions.”

Note: Neutropenia is an abnormally low level of neutrophils, a type of white blood cell. All white blood cells help the body fight infection. Neutrophils fight infection by destroying harmful bacteria and fungi (such as yeast) that invade the body. People who have neutropenia are at increased risk for developing serious infections because they do not have enough neutrophils to destroy harmful microorganisms that cause disease. Some degree of neutropenia occurs in about half of people with cancer who are receiving chemotherapy, and it is a common side effect in people with leukaemia. People with neutropenia may lower the likelihood of developing an infection by paying close attention to personal hygiene, such as washing their hands.       (source: www.cancer.net)

It must have come as a massive shock, you went from being a normal family to suddenly having your lives dictated by hospital appointments

Angela: “Absolutely, both I and Paul stopped making any plans with friends because every time we did we had to cancel arrangements because poor Chico had a fever. When something like this happens you just drop everything, all our focus was on our son and we felt like we just had to knuckle down and do what needed to be done. I’m still dealing with the fallout from letting everything slip, I used to be so good at all that but you just have to focus on the important things.”

In part two of this interview

Find out how Chico was administered Marinol (a synthetic version of THC) and what happened when he was introduced to cannabis oil whole plant extracts.

Jeff Ditchfield: is a Cannabis Consultant, Activist and Author, he lives in Spain.

Jeff has lectured at The Royal College of General Practitioners and John Mores University on the medicinal application of cannabis and he is internationally acclaimed and respected for his research and testing of cannabis based oils and preparations for medicinal use.

The Medical Cannabis Guidebook by Jeff and co-author Mel Thomas is available on Amazon.

Originally Published in Weed World Magazine Issue 117