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“It is great testament to the human spirit, we must continue to rise after adversity, as I truly believe this is where our biggest life lessons are learnt. The world will not save you. You will save you. You will find from your darkest depths, your most guarded shadows, a power to get through”.

Maya Angelou

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I made these chickpea & sweet corn burgers for our dinner last night & put them on my stories...I can’t keep up with the requests for the recipe 😅 so I’m putting the link in my bio! I always add chopped spring onions, fresh lemon juice & chilli flakes. Dylan loves them 😋 & they’re vegan 🌱🙌🏾...enjoy peeps! #veganburgers #jamieoliver

After seeing Dylan’s consultant yesterday it seems there are still some concerns regarding his chickenpox. Basically because he is now neutropenic & he has insufficient neutrophils (a type of white blood cell) to help his skin heal some of his spots aren’t healing quickly enough & still look red raw...they are an infection risk. As such, even if his blood count is up next week he is still not allowed to have any of his daily or weekly oral chemotherapy because they will bring his counts straight back down again & we need to do everything to allow them to rise. He’s been put back on a two week course of antiviral meds because they fear chickenpox may return & he’s not allowed to have this month’s steroids. When he does have steroids they always boost his neutrophil count but I learnt yesterday that steroids suppress certain lymphocytes (another type of white blood cell) which are needed to help wounds heal & scar formation; if they don’t heal they will become infected & with no immune system Dylan will be even more up against than he is already. So whilst he may only have had seven spots, his body has been well & truly battered by a common childhood virus. Whilst the average time off school for a healthy child with chickenpox is around 6.5 days, Dylan has already been off school for 2.5 weeks & counting. It has taken 2 weeks for his neutrophil count to go from 0.2 up to 0.3...it’s a slow process & he’s exhausted. By the middle of next week we’ll know if they have increased further...fingers crossed they do; it’s serious stuff. On the plus side...no steroids is something I think I can live with right now; got to focus on the small wins. #childhoodcancer #livingwithcancer #chickenpoxsucks #neutropenia #lymphoblasticlymphoma

Dylan had just turned six when this all kicked off...I couldn’t explain to him why he had cancer because whilst I knew something had happened to his white blood cells, I still to this day don’t understand why it happened to him; fortunately as yet, he’s never asked. What I could explain so that he understood was what would have to happen to him because he had cancer & whilst he’s asked very few questions, we have had some really tricky conversations (2nd picture was a conversation when he was six & I was changing the dressing on his Hickman line 💔). The other day I asked Dylan when he was going to stop sitting on my knee to have his general anaesthetic (not that I mind...it’s just that he’s huge 😅) & he said probably when he’s 12. I couldn’t reply; I froze. I haven’t explained to him that at some point his treatment will end because it’s a point in the fast approaching future that I’m struggling to get my head around. We just take each day & see what comes. Today Dylan has vincristine no.35/44. Steroids start this afternoon...🤯. Vincristine is not blood count dependent; because of chickenpox & his extremely low neutrophil count Dylan hasn’t has been allowed to take his daily oral chemotherapy for over two weeks. The only good thing about steroids is that they increase his neutrophil count...fingers crossed he’s back up & running next week 🤞🏾. #vincristine #childhoodcancer #livingwithcancer #lymphoblasticlymphoma

“The longer I live, the more I realise the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you. We are in charge of our attitudes”. Charles Swindoll. Ruari George; living life with one of the best attitudes I’ve ever known. #hesgood #determination #inthefaceofadversity #attitudeiseverything #itsyourchoice #reallife #thiswasjustbeforehescoredatry #ibloodymisshim #myboy

Dylan’s approach to eating strawberries has thankfully changed somewhat since he was 9 months old! His blood test yesterday came back showing that he is still severely neutropenic & because we can’t scrub//peel strawberries we’re still avoiding them (amongst other things) as they have a higher risk of carrying bacteria. He loves apples & mangoes which are both fine (unless they have any bruises...bruises also carry bacteria 🙄). He also likes freshly prepared, home cooked food...constantly (just like his brother 😅), thankfully he’s not averse to the odd fish finger (it’s getting boring now 🤯)! Neutropenic cabin fever hasn’t quite set in yet...you never know he might get back to school next week & I might get a day to myself #doubtit 🤪! #livingwithcancer #lymphoblasticlymphoma #neutropenia #childhoodcancer

A few weeks ago I was asked if I’d talk to a group of oncology trainees about what it’s like to be a parent of a child with cancer; I turned it down as I thought we’d be away but once I knew we couldn’t go I called the hospital to say that I was available if they still wanted me. Yesterday I gave a talk to future oncology staff about what it’s like to be on this side of the fence. I spoke for half an hour about pretty much everything; the shock that never leaves, constantly fearing the loss of your child, the nervous breakdowns, being on the ward & the trauma you relive each time your child is admitted, the fear of relapse, the quiet acknowledgement of deaths that occur, things people say, siblings, mourning a previous existence & knowing it will never be the same again & having no choice but to carve out a new life day by day. I spoke about the single parents doing this on their own, how many people have to give up their jobs & about all the things that just don’t matter anymore because all we want is an answer we know we’re never going to get. I mentioned that we can’t travel abroad & that we should actually be on holiday but chickenpox happened, that apart from about two weeks in just under two years nothing has gone “to schedule” & virtually nothing can be planned. I also talked about learning how to laugh & find some semblance of happiness whilst living in a bubble of sadness & fear; there was a fair bit of laughter whilst respecting the pain that now goes hand in hand alongside it. The nurses in particular have given us so much love, our oncology team are a bunch of very special individuals. I explained, when you’re on such a long treatment plan, many of them become part of your everyday life; a life that you have no choice other than to face full on. I then asked if anyone needed a tissue, if they had any questions & let them know the T-shirt I was wearing was from Zara 🤷🏽‍♀️. My parting words were “we don’t want sympathy, but empathy goes a long, long way...”. I’m so glad I did it, I think it’s benefitted both them & me. #childhoodcancerawareness #childhoodcancer #livingwithcancer #paediatriconcology

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