Two years ago today, was the first of many MRIs that Dylan has had. Although the results were not at all expected and completely shocking I am grateful every day that he had that first mri, the one that eventually led us here, past surgeries, radiation, chemotherapy, a multitude of test, procedures and medications to NED (no evidence of disease). Continue reading “Reflection ~ 2 years”
This memory came up on my Facebook feed, it reminded me of why I write so much ‘random stuff’ down. This, writing the wanderings of my mind, unedited, helps me navigate through all sorts of situations life shares with me. I am so grateful I started doing this 4 years ago, it’s made the more challenging experiences a little less heavy to carry.
Continue reading “Talking about Cancer – The Voice in my Head”
A day like any other…. Well a day better than this time last year and worse than this time two years ago, but another day, pretty much the same as the day before.
This time last year Dylan was in hospital having blood transfusions, IV antibiotics, a wide range of medications, he was a little lighter weighing in at 40kgs, and vomiting two to three times a day. He was half way through his chemo, and looking forward to finishing treatment and Continue reading “Another Day”
26 down 42 to go Faces of Courage
Every day for the past 10 days I write and share these stories of children, some who are still enduring treatments, some who have come through the other side and some who have passed away. It’s been exhausting, it’s relentless, it’s heartbreaking, it’s what I remember my hours felt like when Dylan was going through treatment , and this is part of what these parents, the ones before and the ones still to come experience when they have a child with cancer. Continue reading “Faces of Courage – Childhood Cancer Awareness”
This week as we attended to Dylan’s post treatment scans and tests we were reminded of the tragic reality of this horrific disease. Two mothers held their little heroic boys in their arms as they said their last goodbyes, allowing the whisper of their last breath to be released in the comfort of their mothers loving arms. Both boys courageously endured very harsh medical treatments, while still living fully sharing their energy and joy to all those around them. Their lives weaved with challenges that many others never experience, their impact on the world around them significant and permanent. Continue reading “Aware”
“THE MASK… we had radiation planning today (28/6/2016), Dylan has a custom made ‘bed’ and a super freaky mask that will help hold him in position during his radiation treatments. Seriously I am honored to be traveling this life with this kid, not a single complaint or moan, he’s just doing what needs to be done to get well, the kids got tenacity and totally rocking this journey!!! ”
Radiation – I’ve been skirting around this topic for a couple of weeks now. I wasn’t quite sure how to put the experience into words. It was worse than we imagined. It made the diagnoses real. The long term side effects are frightening….. Maybe these are the reason I found it difficult to write about it.
Continue reading “Radiation Therapy”
30 sessions of radiation, 5 days a week for 6 weeks, it was grueling.
“19 July 2016
What can I say, it’s been tough.
Today as our eyes ‘leaked’ Dylan and I discussed how weird we felt. Continue reading “Reflection”
Sometimes it’s not the message but the way it is delivered that is painful.
So as you may know not all tumors are malignant (cancer), so when you have a tumor removed it is tested to see whether or not it is malignant. Obviously the results dictate much of how your forward journey into treatment will unfold. In my view, the way this news, your results are delivered to you is pretty important.
Continue reading “Shoot the Messenger”
What wrong with this …. The stereotypes
Picture a sweetly smiling child, with a little twinkle in her eye, some colour on her cheeks and a beautifully shaped bald head. That’s the image of a child who has had treatment for cancer, and it doesn’t look bad, but it is what it is … An image, just a snapshot, possibly edited for visual effects. Continue reading “Childhood Cancer – Many Faces”
This day a year ago when Dylan had surgery Life was transformed into something more.
We were remarkably calm considering the situation. Due to the fact that it was a long weekend everything seemed quite calm and quiet in the hospital, the Saturday we went into emergence flowed smoothly, we were seen promptly by a lovely doctor who was originally from Cape Town, questions followed, a cannula was inserted, blood was taken, and then the resident surgeon who was called in, an amazing Syrian doctor who throughout Dylan’s hospital stay visited him daily, got things moving smoothly and efficiently, after an examination, questions and a look at the first MRI we were taken to get another MRI, there was no one else in the medical imaging department, so the process to have the hour long MRI was quick, a few spots on Dylan’s head were shaved and little markers were placed on his head, he had the MRI and things from that point went quickly and are blurry. Essentially taking him in to emergency that day was the best thing we did. Continue reading “That Day a year ago”