The Wheel Turns

The first month of chemo is almost over, we are about to begin the next cycle and quite honestly I am feeling pretty apprehensive about it.

Those who really know me know that I’m not one to wait in anticipation for test results, or get worked up about something that I can’t control, but this has just got to my core and even the slightest thought of going back and watching him get injected with this poison and then spend the month sick just eats me up.

The great thing is He’s okay with it, he understands that it’s the option that gives him the best possible chance of wiping out the cancer, and as he said “it’s not as bad as he thought it would be.” This kid is seriously amazing.

His eyes are red, his mouth filled with sores, his skin has peeled, his feet and toes have ached, he vomits daily, he is pretty exhausted, his tummy muscles are sore, his weight is low, he has eaten a single maltese, a small bite of chicken, a few sips of frozen coke, a few spoons of yogurt, a little ginger biscuit …. I think that’s it …. Thank goodness he decided to get the PEG (feeding tube), a very wise choice. He too made the decision to get a biopsy prior to treatment, with this chemo his fertility is wiped out, even though as stated by him “I don’t know if I want children, I don’t even really like them….. But I’m doing this for my future self”.

What became clear this month was my limits, and my courage. By the forth day in hospital my tolerance is zero, and I really don’t give a F**k about much, how extremely sensitive I am when we get home from the hospital and I need time to gradually integrate back into the ‘neighborhood’, my time is very limited and it’s valuable and so I must make choices of spending it with those who value me and appreciate the depth of what is going on in our lives now. 

I found the courage to speak up, loud and clear, not to be intimidated by my lack of medical knowledge, I opened up to ask and to learn, to share my vulnerability and rawness of my emotions, I found the strength to reached out to friends even though I knew I may be disappointed. I found the courage to be honest about the nastiness in this disease and to embrace the moment and accept just whatever it may be.

Dylan taught me that not everyone is easy to talk to and that’s okay, and he reminded me that things could always be worse, physical wounds do heal with care and time and you can still be happy when you are sick (well not while you are getting sick but once the vomit is over get on with whatever you were doing no need to dwell on it).

The biggest blessing in all of this is friendships, new friendships, old friendships, the value of communicating and sharing time with another person. 

 Listening to Dylan chat and laugh while he talks to his friends online, his face brightens up and he is his usual self. He loves his friends, they take time to game with him and talk with him, some almost every day, and just last night I overheard him say “I’ve got the best brother, he lets me play on his stuff and …..” My heart swelled, I know it’s true, Josh has been such an amazing support and friend not only to Dylan, but a tower of strength and optimism in our family, accepting and undemanding, he just gets on with what needs to be done. I am so grateful to know these two little (not really little) men, (I’m a great Mum so I can totally understand how these two amazing souls share my world).

I too have found the gift of friendship to be in the quality not the quantity, I’ve spilled my heart to some, uncensored and open, they have listened and made me feel valued and supported, I truly don’t think I would survive this without them. My mother has been listening and loving every day since the start, truly so blessed for our beautiful relationship and her strength to be an incredibly strong support for me. 

Within the safety of the hospital strangers bond, support and share with ease, honestly I cannot stress enough the value of feeling heard and of listening to someone. 

This ride can get pretty isolating and loneliness has been a frequent visitor for both Dylan and myself. Thank you to those friends and family who have offered us comfort.

The most thoughtful of gifts were received, twice a bag of very South African goodies arrived at a most needed time (one in the hospital from my family in South Africa – thank you Mom, Dad and Sandra) and the other dropped by our front door on a very low day just out of the hospital (thank you gorgeous Simone). Beautiful roses from beautiful friends (Janelle and Lara) , an awesome Halloween card from a lovely young lady in Idaho (Brandi), coffee and cake and quality time with very special friends (Thank you for listening and for taking the time to share your care Janelle, Sam, Colleen, Maryanne (Dylan loves the book Maryanne)) , an incredible ‘The Walking Dead’ artwork created especially for Dylan (thank you talented Zoe for your thoughtfulness and generosity).

I wish I could say I was replenished and fully charged, ready for this next round but I’m exhausted, I’m disappointed, I absolutely hate seeing the suffering this treatment creates, the feelings of frustration of the ignorance or dismissiveness by those who do not know, but we must go on, and that we will and Dylan will teach me more and remind me of the things I have cemented at my core. We will be touched by the love and kindness that surrounds us, and learn many new things, we will shed any heaviness and our hearts will expand.

The value found in this journey out weighs it’s price.


A view from a room….. Perspective

Room with a view…..

We arrived in emergency at RCH last night, already tired from spending a good portion of the day here in day oncology. Dylan had to come in for blood tests and had his first transfusion of platelets. He is what they call neutropenic, has very low white blood cells, so can’t fight infection, has no immunity. We were told that if his temperature goes above 38deg C that he’d need to come in to emergency and get IV antibiotics.

We arrived in emergency just after 9pm, shortly after that the antibiotics began to trickle through, he was put in a little room in emergency, then thankfully at about 2am a room became available on one of the wards and we were moved.

So here we are, in a very comfortable room, with a beautiful view, getting well cared for.

In a moment


It’s hard to believe that four months ago we were sitting anxiously beside Dylan in the airily peaceful recovery room waiting for him to wake up. He had just had a life saving 8 hour brain surgery to remove a 4.5cm brain tumor.

Prior to that we had never been to Royal Children’s Hospital, we had driven past countless times and wondered what it was like inside, now it’s all too familiar. In the months since he has had countless tests, appointments, procedures and as you know currently undergoing chemotherapy.


He has now completed the first week of chemo.
Chemo treatment is pretty serious business, there’s a whole lot of preparation before it is administered, while its administered a very close watch is kept on Dylan (because it is poison) and then there is a whole lot of monitoring and testing. Originally it was a Monday to Friday hospital stay but, as I have now experienced these things are very flexible, we ending up staying an extra night.
Dylan made the decision to stay the extra night in hospital on Friday due to the ‘side effects’ of the treatment, even though he really wanted to come home he agreed with the professional opinion of another day of care Although the treatment took a significant toll on him he was pleasantly surprised….. He thought it would be worse. Perhaps the endless supply of anti nausea drugs did the trick or perhaps it was having me at arms reach for the majority of the time, never the less he was relieved.

So after a rough week we got home on Saturday afternoon, tired but so happy to be home. Then Monday, another treatment but just at day oncology.
The surprise from the nurse coordinator and oncologist was clearly visible, Dylan has coped remarkably well with such a toxic cocktail. We are not sugar coating this at all, it’s tough, and we know it will get tougher…. But we are focusing on the successes, the feel good moments, the no vomiting days (few and far between), the little bites of food, the contact with friends, the closeness and growth that comes from journeys like this, it is remarkable, something money can’t buy and books can’t teach.
This past week we met some of the most courageous and remarkable humans, we were touched by the generosity of charitable organizations and warmed by the care of professionals. These are some of the treasures though the sleepless nights and painful days…..

In just a moment our world changed.