Today’s post is a bit of a long one, but please stick with it to the end, firstly because it’s a serious one, and secondly because there’s a (possibly unexpected) bit at the bottom that needs attention. Let’s crack on!
This is Rudy, Felix, and Casper the dog. They are the children (and pet!) of my friend Jayne and her husband Russell.
Two years ago, Felix (in the batman shirt) was diagnosed with Acute Lymphoblastic Leukaemia (ALL). He was 3 years old. I can’t even begin to imagine the sheer terror and pain that Jayne felt when she heard the news.
In January 2012, Jayne spotted a bruisy rash on Felix’s legs, and trusted her gut and got him checked over straight away. It was a Sunday, and so it was an out of hours service. The doctor was on the ball, and sent them for blood tests the next morning, despite Felix seeming well. On Monday afternoon they got the diagnosis. By Monday evening they were in Bristol Children’s Hospital, ready to start chemotherapy.
Jayne was told that the Leukemia had been caught very early, thanks in part to the doctor who didn’t shoo away a worried mother with a child who looked fine, and in part due to her own knowledge and tenacity. I’m sure had she come up against an unwilling doctor, she would have pushed! thankfully she didn’t have to.
In the course of the next year, Felix had:
11 General anaesthetics
3 Bone marrow aspirations
11 Doses of chemotherapy straight into his spine
3 Doses of chemotherapy into the muscle in his leg
49 Doses of IV chemotherapy
205 Doses of oral chemotherapy
Among countless other things. At the very beginning, Felix lost his hair. I remember Jayne telling us that she would make people look at his eyelashes, because she knew they would go. When he went to Rudy’s 6th birthday party a few months later, it was all gone.
But it was also on it’s way back. By the beginning of June, Felix had full thick eyelashes again. seriously, they would make a model jealous! He was also growing hair again, in fact by June he had a soft blond fuzz, that was clearly visible! He would lose it again with more treatment, and on his 4th birthday in the Autumn he was bald again. But what grew after that was thick, gorgeous, curly hair, which would eventually look like this in April 2013.
Now, The big C is a really sad thing to talk about, of course it is. But. Felix is such a bright cheeky little guy. The photos that Jayne would share with us rarely showed a sad Felix, and we were more likely to see this:
A three year old boy, just being three. Oh, this is a hospital corridor? I’ll just take my scooter down this fantastic flat surface. And if you really want the image of a child in a hospital bed, let it be this one.
What I love about this is that you could take away the hospital, and they’d just be brothers, sitting together, watching a movie. I mean, if you have to be very unwell, a big brother to look after you has got to be a must! Felix is a fantastic kid, and Rudy is a lovely brother.
Felix is now 5. It’s been over 2 years of treatment and he is now in the long-term phase and will be until April 2015. This still includes a huge amount of medication and one week in every four he has to take steroids. Jayne has had to write letters to the parents of his class at school to ask them to pay extra attention to illnesses – particularly chickenpox, measles, and shingles – and not send in sick children. The care they have to take is staggering, to count as exposed to an illness Felix only has to spend something like 30 minutes in a room with an ill child, not even actual contact. Anytime Felix gets a temperature, there’s a very high likelihood that he’ll have to go into hospital. Saying that it’s stressful is an understatement.
During his treatment, CLIC Sargent have helped him and his family, and countless others. They offer emotional, practical, financial, and clinical support. They also help with short holiday breaks and have ‘home from home’ services – 8 houses around the country within 10 minutes walk of the hospital, and they have designated CLIC nurses in those hospitals. I asked Jayne what CLIC meant to her, seeing as she obviously knows what they do better than I do, and here’s what she said:
“Felix was diagnosed with Acute Lymphoblastic Leukaemia in January 2012 at the age of 3 years and 3 months. We were all devastated and our lives were changed in an instant. CLIC Sargent were – and continue to be on a daily basis – an amazing support. We were transferred to a hospital two hours away from our home and were given free use of a beautiful Home from Home for the whole three weeks we were there. Now he is having treatment closer to home we have four wonderful CLIC nurses who offer excellent care and advice and even come to our home to do blood tests to save us a 40 mile round trip to hospital. There is a CLIC social worker who has helped massively with the associated financial implications of the diagnosis – Felix needs treatment until April 2015 and so I am unable to work anymore. CLIC Sargent truly is a fantastic charity and we are keen to support them in any way we can so that they can continue to help families during the worst time in their lives.”
So, with all of that, I thought, what can I do? And I landed on hair. It’s possibly the most obvious outwardly sign of chemotherapy. For a few years now I’ve wanted to donate my hair for wigs, but I could never get it long enough without layers, and now I finally do. But I’ve decided, it’s time to go big or go home, and I’m already at home. So, In around 10 weeks (mid june) I’ll be shaving my head for CLIC Sargent. I have this Just Giving page for any and all donations, which will be very gratefully received. There will be photos, oh yes. Before, after and in progress. My initial goal is to raise £200, So let’s get to it! Thank you 🙂
Here is Felix’s medicine shelf on Sunday. As of friday, it will be almost completely empty. Hey, everyone needs calpol.
Undomesticaited 