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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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Lumbar Puncture 🎗. This photo of Dylan was taken in May 2017. We were waiting for him to come round after a lumbar puncture: Yesterday Dylan had his 21st lumbar puncture to have the drug methotrexate injected intrathecally. His port was accessed in order to give him “magic milk” to send him to sleep for his 29th general anaesthetic & then a needle was inserted into one of the spaces between the bones of his lower spine. The drug was then administered through this into his spinal canal in order to prevent cancer cells from entering his cerebrospinal fluid & affecting his spine & his brain. He will have 7 further lumbar punctures (one every twelve weeks) until his treatment plan is scheduled to end. Methotrexate is a cytotoxic (toxic to living cells) chemotherapy drug & an immune system suppressant. Dylan also takes this drug orally in the form of 9 tablets once a week. It causes very few side effects when given intrathecally, most of his discomfort is as a result of the procedure; his back feels sore & bruised. However it can occasionally cause headaches, dizziness, tiredness, blurred vision & loss of balance for a few hours so it is essential that we keep an eye on him & that he rests afterwards. #childhoodcancerawarenessmonth #childhoodcancer #lumbarpuncture #intrathecalmethotrexate #itmx #livingwithcancer

“Humanity owes the child the best it has to give”. Eglantyne Jebb. • When Dylan was diagnosed Ruari was 200 miles away with his father for the Christmas holidays; his father rather bravely took on the onerous task of breaking the very sad news to Ruari that his little brother had cancer. Last weekend was laced with some sort of sick twisted irony as I was given the onerous task of breaking the very sad news to Ruari that his father has just been told he has cancer. • The silent shock is deafening & the pain I feel for my boy is simply indescribable; as is the pain I feel for the rest of his family. Ruari & his father are completely surrounded with love & strength...something I know only too well is an essential part of travelling this horrendous road. Rock bottom has a basement...the paradoxical meaning in my last post really stings; “You must do the thing you think you cannot do” & now I realise that even that is not enough. • Today is Ruari’s 19th birthday. • Today Dylan has lumbar puncture no. 21/28. • I know that we will all be holding Ruari upright, ready to catch him when he stumbles & keeping a very close eye on him as he tries to come to terms with two people he loves so much being dealt such a cruel blow. Right now we are all completely stunned. There are no words. Everyone is still processing; everyone is still waiting; everyone is just numb 💔. #cancer #secondarycancer #terminalcancer #livingwithcancer #lostforwords #myboy

Looking fear in the face 🎗... ...every single day. What used to scare me is a walk in the park these days. In fact absolutely nothing scares me other than the health, wellbeing & happiness of my children. #childhoodcancerawarenessmonth #livingwithcancer #facingfears #childhoodcancerawareness #eleanorroosevelt

Treatments & funding 🎗. There has been a bit of news about new cancer therapies for children recently which is of course great news. However we can’t ignore the fact that historically childhood cancer has received very little attention; it still has a long way to go. The following is taken from an article written for the Telegraph in 2016 Dr David Walker: “I’ve been a children’s cancer doctor for 30 years and in that time over a third of my young patients have died due to treatments that failed or were too toxic. For at least half of them, the sheer rarity of their condition meant there wasn’t a clinical trial for them to explore the most modern treatments. The Cancer Drugs Fund, created to ration treatment for adults, affords children no special status and frequently denies them both new and existing therapies. So-called "rare" cancers are collectively as common as the "common" ones. But the perception that research should be funded according to incidence means that individual rare cancers are doomed forever to receive a fraction of the money we shovel into the big four adult cancers. The result is a disregard of half of the cancer world, a one-sided picture...”. “For children’s cancers this means they are hidden in plain sight, highly visible to the public through their emotional media appeal for the big cancer charities, yet screened out of the research funding system by their "rare" cancer status”. The Cancer Drugs Fund, created to ration treatment for adults, affords children no special status and frequently denies them both new and existing therapies. “Do we continue to let drugs companies set a commercially driven pecking order for the development of new treatments? And if we give the public a voice in priority setting, how do they make their voices heard? Should government step in and give the necessary boost to rare and children’s cancers through regulation?”. Link in bio 👆🏾. The 2nd picture is the treatments Dylan’s had, when they were developed & how many he’ll have received by April 2020. #childhoodcancerawarenessmonth #livingwithcancer #treatment #funding

Consistency 🎗. “Please mummy, please can I stay at home”, these were the words Dylan sobbed at me on the school yard this morning whilst I was trying to encourage him to go into school. He was dragging me back towards the school gate & in all honesty I just wanted to put him back in the car & drive home with him. It took 3 teachers to coax him in & I’ve no idea how long he’ll last today...I’ll just wait by the phone. Since the beginning of term last week he has had 2 full days in school, then he had chemo & then he started steroids. This month his 5 day course of steroids has hit him really hard & his emotions are through the roof. He managed 3 hours of school on Monday & yesterday they rang me at 11.20am to tell me he was “really struggling”. Along this journey we have tried to keep some sort of consistency which has been virtually impossible because we are able to control so little. We have tried not to overindulge him because basically we don’t think it’ll help him in the future if he is given everything he asks for; even though we just want to give him the world him surviving & being able to live in this world is what we desperately want more than anything. School is a consistent feature in Dylan’s life, as is love. Discipline is something that starts to tear at your heartstrings when your child is seriously ill but without it an important part of consistency would disappear. Earlier this year I wrote a blog post “Consistency: The Battle” (link in bio 👆🏾) which highlights some of the complexities of navigating life with a child with cancer whilst desperately trying to hold onto “life values”. It’s mentally exhausting...I have been shaking for the last 4 days. My anxiety is high. Trying to keep it together whilst your child has spent the last week sobbing uncontrollably due to the side effects of a medication he has to take every month for over 3 years is exhausting. Trying to be normal is exhausting. Childhood cancer is exhausting...for everyone. #childhoodcancerawarenessmonth #consistency #livingwithcancer #childhoodcancer

Emotional Impact 🎗. “CCLG parent survey reveals the emotional impact of childhood cancer.” I read an article by @cclg_uk ; it highlights many of the daily feelings that most parents & carers experience after a child is diagnosed with cancer. We have been unbelievably blessed to have had fantastic support around us since Dylan was diagnosed. The parents at school devised a meal rota & every Friday for months someone would drop over a week’s worth of home cooked food for us to put in the freezer. The amount of pressure that took away from us was immense; we would often be in hospital on rotation with Dylan overnight so it really helped...it particularly helped Ruari as Nick & I were often not home until late 💔. Whilst we are surrounded by wonderful friends & people who bend over backwards to help there is still an indescribable darkness that hangs over you once you receive the news that your child has cancer. Emotions are often unpredictable as are the minutes, hours & days. Some days you feel able to talk, other days you just don’t want to get out of bed such is the weight that you carry around constantly. This article touches on so many subtleties & there is little I don’t identify with. The sense of loneliness & isolation, the stress & crippling anxiety, the grief at the loss of a “normal” life, the lack of awareness, the things people say that cut through you...it goes on. The article also highlights the improvement needed in focusing on the parents & carers who are going through horrendous emotional & psychological battles whilst watching their child being treated for cancer. There is such a long list of unseen side effects besides the side effects of the treatments that these children have to endure in order to hopefully be cured. Childhood cancer affects absolutely everything; life really is never the same again & whilst we all wait for our “new normal” we’re still working out how to come to terms with losing the old normal & dealing with perpetual shock. If you have a moment, please read it (link in bio). You never know who might benefit from this kind of awareness. #ccam #livingwithcancer #emotionalimpact #childhoodcancerawareness

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