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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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Thanks to lots of lovely people sharing Friday’s post I seem to have some new followers 💛. . So, for those not in the know, this is Dylan. He’ll be 9 in November. He has cancer. . He’s being treated for stage 4 progenitor b-cell lymphoblastic lymphoma. He has daily oral chemo & another weekly oral chemo. He has intravenous chemo once a month & so far has had 33 general anaesthetics (mostly for lumbar punctures with another intrathecal chemo every 12 weeks). He also takes a 5 day course of steroids every month which makes him an emotional wreck. . His cancer is rare; I know of only 3 other children with b-cell lymphoblastic lymphoma, all of whom are at different stages of treatment. Dylan developed tumours which is particularly unusual; less than 3 in a million . . He was diagnosed in December 2016 & now has 6.5 months of treatment left. . Our lives stopped when he was diagnosed. We now live on a schedule which is often interrupted by all the other aspects of having cancer that you don’t really know about until they happen. . I am as honest as I can be about being the mother of a child with cancer; I write & share from my perspective...because that’s all I have; the shock never leaves. Some days are good, some days are absolutely horrendous but this is how we roll. I’ve learnt so much through this torrid journey, not just about cancer but also about myself & others. . Dylan is incredible in my eyes; the consultants told us they couldn’t believe he was “still going”. I salute him, his bravery & his resilience every single day. . Welcome to our world ✌🏾. . #livingwithcancer #childhoodcancer #ccam #lymphoblasticlymphoma

Flash back Friday 💔. . He’s pulled a muscle in his back. It’s back to school germs. School makes them tired. He’s been sick twice. His back aches. It’s a virus. It’s an abscess. It’s mumps. Public Health Wales will visit (they didn’t). I’m not sure about this. He’s always been a “sweaty baby”. He’s missed 10 days of school. I’m not sure about this either. Our GP is back next week, I’ll book an appointment. A & E said it’s an allergic reaction. The steroids have got rid of the swelling. The swelling’s back. I’m not sure about this. I’m not sure about this either. She’s taken bloods. We’ve got an appointment at the hospital. . What’s the worst thing you can imagine? . He’s got cancer. . Childhood illnesses are a multitudinous mix of all sorts...& very common. Four months of symptoms that presented themselves at very different times, some of which weren’t even symptoms as far as I was concerned (both of my children were sweaty sleepers from very early on). He threw up twice in September. . If you don’t feel comfortable, keep pushing. Keep trusting your instincts. . The 1st picture was taken at the end of October, the 2nd was 4 days after he was admitted to hospital, we were still waiting for a diagnosis. It turns out that swollen cheek wasn’t mumps & it wasn’t an abscess. It was in fact, a cancerous mass. One of several huge tumours that shrunk twice thanks to two fortuitous courses of steroids (without which I am sure that Dylan would no longer be here). That particular tumour ended up encasing the majority of the left hand-side of his head, infiltrating his central nervous system & affecting his optic nerve. Without that tumour we would never have known about the myriad of others encased within his body; he was riddled with them. Simple symptoms from September to December...stage one to stage four in just four months...these odds make a massive difference but I had no idea of the symptoms. . Now I know that the symptoms add up. . I had no idea whatsoever that my son had cancer...why would I? . There is no information anywhere...have you seen any? . #ccam #childhoodcancerawareness #livingwithcancer #lymphoblasticlymphoma #childhoodcancersymptoms #fbf

I quite literally think about Ruari all of the time. I worry; I wonder whether he’s coping & then I speak to him & he blows me away every single time. I always ask him if he’s “doing ok”, it’s code for “are you coping since your dad passed away”; he’s always honest about however he’s feeling. Some days are good, some not so much; some are downright bad. I spoke to him last week & asked him if he’s “doing ok” & he said he was “all good at the moment”. He then went on to tell me that he’s watched @rickygervais in After Life about 4 or 5 times. “It’s brilliant mum, every single thing he says & does is relatable...I just love it”. Grief is such a personal thing. I can see that he’s feeling his way through it & unexpectedly finding things he can relate to which in turn help him to feel a tiny bit better... He said it had helped him by making him more comfortable with how he’s feeling about his loss. He also said that if you can laugh at yourself through adversity then you can pretty much deal with most things. Fortunately he’s one of those that can laugh at himself because the opposite is basically a recipe for disaster. That’s my boy...it’s breathtaking. I got of the phone beaming with pride & worrying slightly less...only slightly though 🖤. . #livingwithgrief #grief #livingwithcancer #myboy

This September is the third Childhood Cancer Awareness month (CCAM) since Dylan’s diagnosis for stage 4 progenitor B-cell lymphoblastic lymphoma. Ironically, when I look back pre-diagnosis I realise that his symptoms started in CCAM 2016 💔. Last year I posted almost daily about all of the aspects of having a child with cancer that have impacted us since his diagnosis...nothing in our lives has been left untouched. Nothing. This photo was taken the day that Dylan went back to school for the first time since December 2016, he did an hour & a half. He’d missed two entire terms & had barely seen any of his peers because he was so ill. In this photo he still had his Hickman line in & had only just started maintenance...it was September 2017. By the end of the summer term 2018 he still hadn’t done a full week. It is now September 2019 & he has 7 months of treatment left. The last time we saw Dylan’s consultant we were told that the next few months could be his most vulnerable stage of maintenance yet. This last stretch is the hardest for many of the long-term treatment kids; their bodies are ravaged & weakened from all the chemo, they will be more tired, more at risk of infection as their immune systems are so battered by this point. Sometimes they have to stop treatment early because it just gets too much for their bodies to handle. The truth is we have another winter to get through, coughs, colds & viruses to dodge...which often isn’t possible due to the nature of how these things emerge. There is a shortage of the flu vaccine & as such Dylan will receive his jab very late in the year, not good. Last time we saw Dylan’s consultant I started talking about the end of treatment, her reply was “We’re a long way off talking about the end of treatment right now”. Today Dylan has vincristine no. 37/44 which also means he’ll start steroids this afternoon. One day at a time 🎗. . #ccam #livingwithcancer #lymphoblasticlymphoma #september

Back to school today...I’m trying to find some enthusiasm & so is he. I had every intention of getting him to do a scrap book this summer & the truth is we could have filled it with a fair bit! I bought one & everything but we didn’t open it once & I’m kind of glad we didn’t. Even though we had to cancel our summer holiday in West Wales when Dylan had chickenpox at the end of June we’ve had a really chilled out, peaceful last few weeks of summer. The oncology team moving Dyl’s lumbar puncture to the day before his last chemotherapy meant we were fortunate enough to have three entire event-free weeks (once the steroids had worn off 🤪)! For anyone the transition back to school is hard at the best of times; Dylan just has so much extra stuff to handle, it’s not remotely straightforward although we do our best to make it so. His sense of foreboding has shot up over the last few days, lots more hugs, lots of “I’m really going to miss you mummy”. I get it...I’m so much happier when he’s at home...I’m less anxious, less stressed. But we need to make the adjustments again, so whilst Dylan slowly settles back into school life (I say slowly because he has chemo in hospital on Thursday & then starts steroids & we all know how that goes 😫), I will slowly try to find my pace. Cancer doesn’t really let you pick & choose how & when to spend your time; I’m still very apprehensive about making plans & know there is little point in trying to create any sort of routine. I’m just going to wing it day by day & see what comes...the holidays are so much easier to navigate. I know he’ll be fine once he’s there & so will I. I’m just going to miss him...a lot 💛. . #backtoschool #livingwithcancer #childhoodcancer #childhoodcancerawarenessmonth #september 🎗

🎗 CCAM. We were told that Dylan’s hair would start to fall out once treatment started; we were told it would start to grow back during a “rest” period in his most intensive course of chemotherapy; we were told it would fall out again once he started yet another aggressive chemotherapy regime; we were told it would start to grow back again once maintenance started & as you all know, it has. His hair has grown back magnificently albeit a slightly different texture to how it was before he had cancer. What we weren’t told was that during maintenance, there is also a chance that his hair could fall out//shed & that is exactly what’s been happening for the last couple of weeks. His hair is everywhere; it’s shedding in small clumps. The other day I washed & brushed his hair & I panicked. Dylan’s also noticed it so we’ve talked about it & he now knows it can happen even at this stage in his treatment. Apparently it is down to one of his oral chemo meds, 6MP; the dose was increased a couple of months ago & this seems to be yet another side effect after all this time. He doesn’t want his hair cut short right now but he knows it’s an option if the shedding continues at the rate it has been. Some people may not notice it as his hair is so thick but I can see it thinning in certain areas. I just wasn’t expecting it; my hands, the brush, his towel, the floor, his t-shirt, the stairs, the rug...covered with his hair. The flashbacks, the shock & the stabbing sadness heightened immediately. The thinning may slow down, his hair will eventually grow back; it’s yet another unpleasant but temporary side effect. #ccam #livingwithcancer #lymphoblasticlymphoma #childhoodcancerawareness #hairloss #sideeffects

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