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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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. Dylan was too ill to be given a lumbar puncture yesterday; RSV & general anaesthetics are a massive no-no for children in high-risk groups. Our consultant said that if they were to go ahead with the lumbar puncture it would be highly likely that Dylan would be admitted not long after as the virus is clearly having an effect on his lungs & his respiratory system. RSV is a common virus but can lead to complications like pneumonia in children with compromised immune systems & high risk illnesses. I love how vigilant our medical team is & despite the fact that this is the 2nd time they’ve postponed this LP, I’m pleased that Dylan has the chance to recover. . Today is vincristine no. 31/44. . We didn’t get the DEXA scan results yesterday as we were there for such a short time but we’ve been told that we should find out today. The feelings of nausea//anxiety//fatigue & suffocation are still 100%. . Thank you all so much for your lovely messages yesterday...it was so mentally exhausting having built myself up for the scan results & then having to leave without them, that coupled with Dylan being under the weather means I’m shattered both emotionally & physically. Just to enhance those feelings of fatigue// nausea//anxiety & suffocation, Dylan starts this month’s five day course of steroids this afternoon... The poor boy is shattered too, let’s hope he recovers quickly & gets back to his usual happy-go-lucky self soon. . #livingwithcancer #vincristine #dexamethasone #childhoodcancer #itsneverending #lymphoblasticlymphoma

. Fatigue (mine) : 100%. Nausea (mine) : 100%. Anxiety (mine) : 100%. . Hoping for positive news from the DEXA scan results today. Keeping my head straight is hard at the moment. You’d think after 2 years & 4 months I’d be used to all of this by now but I can’t see that ever happening. It changes you; your child being diagnosed with cancer does things to you that you can’t really ever explain. There’s no manual. You just have to keep feeling your way through the sludgy murky waters...constantly searching for the surface but never quite finding it. . A suffocating sensation : 100%. . #childhoodcancer #livingwithcancer #lumbarpuncture #anxiety #lymphoblasticlymphoma #istillcanttakeitin

I’m honoured to have got to know this little beaut of a boy & his incredible parents over the last few months. Teddy was diagnosed with high-risk neuroblastoma at just 16 months old. He’s doing well & has responded to treatment both here in the UK & over in Spain. His last bit of treatment is not available on the NHS & his parents need to take him to America to give him the best chance of preventing his cancer from returning. I know that not everyone is in a position to donate & nobody would assume that they are but if you could share//donate together we might find people who would or could give selflessly to yet another young child & yet another family desperate to give their child the best chance of life. They need to raise an eye watering amount but as we know the power of social media is incredible. . Can you spare £10 to help get two year old Teddy to New York for cancer treatment that is not yet available in the UK? Teddy’s family need to raise another £120k by June to get him there. Please share, tag friends & donate if you can. You can read more about Teddy’s Neuroblastoma journey over at @mamaandtbear . Thank you...in all of these situations families like Teddy’s & indeed families like ours are blown away by your selfless & genuine generosity 💛🎗💛 #TEN4TED

Dylan will do two days in school this week, he’ll leave a bit early today for a dentist appointment (always important as the large tumour in his head had infiltrated his jaw bone). On Wednesday he will have the postponed lumbar puncture that he should’ve had two weeks ago (they had an emergency...we get it, Dylan was an LP emergency for at least 10 weeks at the start). Then on Thursday he’ll have his IV vincristine & start his five day course of steroids. He’s going to feel horrendous having a general anaesthetic & two chemos back to back & then going straight onto steroids. We’ll probably get the results of his DEXA scan this week as well...it’s on my mind constantly. We made the most of last week’s almost “normal” although his cough & cold are lingering more than I’d like. It’s going to be a really tough couple of weeks & he certainly he won’t be able to pull this pose for a while bless him, but we’ll get there...as always 🎗. #livingwithcancer #childhoodcancer #lymphoblasticlymphoma #perspective #lookingatlife #allhischemoallatonce

On repeat; on the daily. Every time I look at him my heart stops & then starts: stop, start, stop, start... Every time I think about him (which is pretty much all of the time) I go into shock & then I fall into wonder: shock, wonder, shock, wonder... I never want him to leave my side but I want him to thrive: stay, thrive, stay, thrive... Absolutely nobody can tell me if he will survive so I balance the very real concept of life versus death without knowing which to prepare for: life, death, life, death... I breathe in patience & I exhale fear: patience in, fear out, patience in, fear out... I wonder daily how long his life will be: long, short, long, short... . Every single extra breath he takes is a miracle. The very realistic thought of life without him is something I push to the back of my mind every minute of every day. I have to stay balanced right in the middle of all of these thoughts; thoughts which will plague me for the rest of my life. . This is what I do, every single day. . #childhoodcancer #livingwithcancer #childhoodcancerawareness #lymphoblasticlymphoma #highgrade #stage4 #patience #fear #onrepeat

Thinking of everyone New Zealand 🖤💔🖤.

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