At the start of February 2011, my youngest son Kalem, who was 10 at the time, started talking through his nose and I thought he was coming down with a cold.
On 1 February, I looked in his mouth and saw a swelling at the back, it was so big that it pushed his uvula to the side. We went straight to the GP and our doctor referred us to our local hospital.
An ear, nose and throat (ENT) specialist saw us and thought it was a type of abscess. He tried drawing fluid from it three times but nothing came out.
We were sent away with two different types of antibiotics and tried to carry on as normal, because no-one had told us to do otherwise. Exactly a week later, medication was finished but the swelling had not changed and Kalem had started to snore during the night, so back to the GP we went!
He sent us straight back to the local hospital and we saw a different ENT specialist. Kalem was not ill, did not have a cold, sore throat or anything but they kept us in hospital for four days for intravenous antibiotics. He also had an MRI scan done.
Nothing at all was mentioned to me that this could be something serious. I was then told that they were referring us to a more experienced hospital which happened to be Great Ormond Street Hospital for Children (GOSH).
A diagnosis of non-Hodgkin lymphoma
On 23 February, we went to GOSH for a biopsy and Kalem was kept in overnight for observation, but still no mention of the C word.
On 24 February, Kalem and I were waiting to be discharged when an ENT consultant came in and told me that Kalem’s initial results showed he had a lymphoma. My mum instinct kicked in and I asked Ka to go to the playroom.
As a pharmacy technician, a lymphoma meant cancer, I knew that much. When, an hour later, an oncology/haematology consultant explained that Ka had got non-Hodgkin lymphoma/Burkitt lymphoma, I agreed to chemotherapy starting that weekend. Kalem’s tumour was the size of an orange in his throat and it was aggressively growing. If they didn’t do this straight away he would suffocate in his sleep.
Then came our cycle of six months as an inpatient. Kalem blamed me for making him ill, as he thought he was okay but by bringing him to the hospital I’d made him sick!
He needed a feeding tube as he couldn’t eat, he needed to go to theatre every cycle to have chemo and steroids put directly into his spinal fluid to stop the cancer spreading to his brain and spinal cord, he went from 35kgs to 28kgs, and there were times when I thought he wasn’t going to make it.
Bad days, good days and life-long friends
But that all said, we found some positives out of the experience and some friends we met will be in our lives for a very long time! My family went to hell and back but we weren’t the only ones. On Lion Ward, we were one of 14 families and every one with a different type of cancer.
We all had bad days – when his temperature was so high, when he spent all night having a feed through his tube to wake up at 6am and throw the whole lot back up, and to watch my beautiful boy fade before my very eyes, knowing that the chemo may kill him if the cancer didn’t.
But there were good days too – days that were so hysterically funny that myself and the nurses cried with laughter; Kalem played Bruno Mars’ Grenade so many times that all the nurses knew the words and danced with Kalem in his room like they were all at a party!
I have so many photos of his hospital time and each and everyone brings back a memory, good or bad. No-one can ever prepare you for the journey you face and no one will ever quite understand your thoughts on the whole process, but I did what I had to do to give my precious son a fighting chance, what parent wouldn’t?
Kalem finally went into remission at the end of treatment in August 2011. Since then he has suffered after-effects of the chemo, tiredness being the main one.
Life goes on and life moves on, and those of us lucky enough to still have our babies at the end of their treatment are lucky, very lucky. That is why I have never asked ‘why us?’ Why not?! I never got angry or blamed the world.
Cancer isn’t fussy, it’s not bothered about colour, creed, religion or age, so my only encouragement or words to any patient embarking on this journey, is that you are never alone, not ever. Put your pain and hurt into getting back from hell, because you will, you just need a little faith, a little luck and a bit more belief!
We are now six years in remission and he is seen at the UCLH Macmillan Teenage Cancer Unit. Kalem is at college and is working part-time for Boots as a Pharmacy Advisor. After his growth being stunted during his treatment, Kalem has finally had a growth spurt and is 6ft 3in. The youngest of three brothers and now the tallest, he is over the moon with that.
Generally his health is good, he has a vitamin D deficiency picked up at a blood test and still suffers occasionally with tummy troubles but he has learnt to deal with it. He is confident, chatty and a happy teenager but every now and then on specific anniversaries, he remembers. As his mum, I never ever forget, I have just learnt to live with it, but we will always remember we were one of the lucky ones.
Update: April 2020
Kalem is doing great. He works as a dispenser now and is hoping to begin training to become a Pharmacy Technician soon.
He will be 20 in June and next month we will celebrate nine years in remission. What a milestone!
Kalem has grown to 6ft 4in, and has had some issues with his knees. The doctors seem to think his growth spurt after chemo left his muscles and ligaments trying to catch up, but it’s a small price to pay.
Thankfully Kalem is healthy, happy and loving life. He doesn’t remember a lot about his time in hospital and on treatment, but we do speak about it, as it has become part of our history.
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