Blog Posts

Twitter
More

Facebook
Email
WhatsApp
Skype

Like this:

Like Loading...

Search

Search for:

“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

Instagram

Dylan’s neutrophils are up a bit so he goes back to school today...I’m grateful. I’m not grateful because I particularly want him to go back to school (I’d keep him at home forever if I could), I’m just grateful that he can. . It’s a strange time. I can barely speak. Everything is heightened at the moment, everything. I’m trying to work out stuff that can’t be worked out; we all know that leads nowhere. Sitting around waiting for who knows what never leads anywhere either. It’s a rock & a hard place. It’s been a rock & a hard place for the past 3 years. But now, as we approach the end of treatment, that hard place feels just that little bit harder. I see pictures of remote hard-to-access places; mountaintops, islands, stretches of water & I dream of being sat alone so that I can stare at the sky in silence for indefinite periods of time. Then I see my sketch pads, my desk, the gym, a list as long as my arm of things that ‘need’ doing...it goes on. I pay no heed to any of them. I’m torn between being busy & slowing down. I’m wondering whether I should work out a plan & yet I’m used to planning not to plan! For 3 years I’ve been torn between so many thoughts that complete inertia has often looked like the simplest option...but it’s not. There is no simple option, not one. Busy//slow//busy//slow...it makes no difference to any of my thoughts...or what happens. Of course I know they’re just thoughts but I never knew each minute of my life or his had the potential to feel so intense. For three years everything has been & remains to be ‘one day at a time’; that’s the only way I’ve managed. To deal with what comes as & when. . That’s all any of us can do on the face of it. . That’s life... . #onedayatatime #slowdown #speedup #traumaresponse #plannottoplan #endoftreatmentcountdown #fear #limbo #inertia #livingwithcancer #childhoodcancer

The power of social media. Thank you all so much for sharing my last post so far & wide. I know that Lilwen’s family are beyond grateful for every share & donation to help their little girl get the treatment she needs. . I appear to have a few new followers 👋🏾. Here’s a tiny insight into how Dylan & Lilwen know each other. . Dylan was diagnosed with a rare cancer b-cell lymphoblastic lymphoma in December 2016. At the time of his diagnosis Dylan & Lilwen had been classmates for just over a year & Lil was in remission. They were in Year One. Two years into Dylan’s treatment Lilwen relapsed. She had treatment again & finally came back to school. They were in Year Three. Three years into Dylan’s treatment & Lilwen relapsed again. They are in Year Four. It has been an inexplicable devastatingly coincidental rollercoaster of emotions for both of our families; not withstanding the other children in the class, their parents & their teachers...nobody has been left unaffected. . The night before last I was trawling through the three years plus of mine & Amanda’s (Lil’s mum) text messages to each other. An honest stream of mutually supportive, bleak, frightened, hopeful, hopeless & understanding communication from one oncology mother to another. . It’s difficult to explain the affect another child’s diagnosis has on you, especially when it’s so close to home. Whilst they have very different cancers & are affected & treated in very different ways, we both carry the painful burden of the dark unknown & uncertainty. But what I think we can both conclude without question is the undeniable love & support we have received over the years from friends, family & complete strangers. I will continue to say that in raising awareness about childhood cancer I have been truly humbled, not just by the incredible strength & resilience of our children & others like them, but also from people like you. . This is a picture of our two lovelies with their community nurse Jane, who they also share & love (as do we). Thank you seems so small, but the magnitude of those two tiny words is immense 💛. . #thankyou #childhoodcancerawareness #thepowerofsocialmedia #youguysareamazing #humbled

It’s not often that I’m lost for words but sometimes there are situations that just render you speechless. This is Lilwen, Dylan’s beautiful classmate. She was diagnosed with Ependymoma (a rare type of brain tumour) when she was 3 years old. She relapsed in January 2018 & underwent her second brain surgery & then chemotherapy. She really struggled with all the treatment but started to mend & went back to school. In December 2019 her family received the devastating news that Lilwen has relapsed yet again. The tumour is back. She is 8 years old & now has to face gruelling brain surgery for the third time followed by proton beam therapy. Proton is a much “gentler” treatment for Lil, the radiotherapy she has been offered would severely compromise Lil’s quality of life so the only viable option to give her a fighting chance for a more hopeful future is proton therapy. Unfortunately, because she received proton beam therapy in the USA at the age of 3, the NHS will not fund it for a second time & so her family have no option other than to try to raise £50,000 themselves. I can’t quite believe I’m writing this; I don’t think Amanda & Aled (Lil’s parents) can believe this is what they’re facing for a third time & I know none of us can believe that there are two children in the same class with cancer. I suspect most can’t imagine having to raise funds to try to keep their child alive but I also know some of you can...this is now their reality. . Amanda & Aled have set up an @justgiving page & I’ve put the link in my bio & will also add it to my blog site. Please share it 🙏🏾. . Tomorrow, Lilwen has to face brain surgery yet again. If all goes well, her wound will be given time to heal & she will then go on to receive the proton beam that she so urgently needs. I know Christmas has just been but I also know that any amount you may have to spare will be so humbly appreciated. #ependymoma #relapse #childhoodcancer #justgiving #protontherapy #brainsurgery #childhoodcancerawareness

He should be going back to school today but his cough//cold situation is lingering. So many people I know have been ill over Christmas, Dylan included; it’s just taking him ages to fully recover. So he’s staying at home because basically if your kids are ill you just don’t send them to school... #dontsendsickkidstoschool #hecantcopewiththebugs #virusesarecontagioustoo

Pretty sure one of them had just said poo (or willy...or bum)...because that’s universal humour when you’re 4 & 9! 📸 @abi_evh . #cousins

“Music… will help dissolve your perplexities and purify your character and sensibilities, and in time of care and sorrow, will keep a fountain of joy alive in you.” Dietrich Bonhoeffer. . Dylan age 4 🤗. He’s always loved music & dancing no matter where we are. #fbf

Search

Search for:

	Isabelle on Dreams & Nightmares
	Isabelle on Clinical Psychologist
	danieldoi1 on Clinical Psychologist
	thelittlebigc on Clinical Psychologist
	ManFrom Hereabouts on Clinical Psychologist