photo of ethan with hair 3 months post-chemo
Ethan 3 months post-chemo for Rhabdomyosarcoma

 

As promised, here is this week’s article as penned by Ethan’s Mom, Gila Jacobs, on her feelings as an Onco Mom in dealing with the daily trials and tribulations of cancer. As originally explained, this article is posted as is to maintain integrity and passion.

 

13 June 2014

Today was one of those days that I found myself reading up on my son’s risk factors. Presently the cancer is gone, been removed by surgery, burnt off by radiation and kept at bay with chemotherapy. Will it stay gone though, I wonder… and for how long? What will I do if it comes back?

The reality resulting from research is that he has a 30% chance of recurrence in the first year post treatment, thereafter the number drops at a slow pace to about 5% after 5 years. The fact remains that these numbers are still very high. If recurrence does occur, the rate for non-survival is 50%-70%. VERY, VERY HIGH numbers! This is research done the UK though. Finding information specific to South Africa on the internet is not that easy.

Bottom-line here is… I’m afraid for my son. I’m afraid for me. I’m afraid we will not survive a recurrence, medically or emotionally.

So what do you do? What can I do? Grow more grey hairs… feel more exhausted… lay awake just looking at my son while he sleeps peacefully. Pain-free, needles-free, chemo-free but most of all worry-free. I want to lock him in a box and preserve that face depicting this kind of freedom forever. I want to protect him from all he has left behind.

I want to bottle every smile, every sound, and every laugh. Every moment of health that we are sharing right now. Every moment of normalness…

Sometimes I think that this period of monthly check-ups post treatment are worse for me than actually going through the chemo with him. Then I remember all the time we spent away from home, away from family events, away from normal life, and I kick myself for wasting any time at all worrying… I’d rather be spending time crawling on the floor playing with toy cars. These days I also enjoy kicking a ball in the yard – something I never even indulged in when I was younger. I don’t scold when he unpacks my pot drawer or the cupboard where the plastics are kept and throws them around for sound comparison. I hide behind the bed on all fours playing “wheresie wheresie” for ages.

I just wanna see him laugh like crazy! I just wanna hear that happy sound forever! I watch and listen carefully as he talks to the imaginary person on the other end of his toy phone. I just don’t want to miss a second of it.

How we missed out on all of this during chemotherapy… my son is like a totally different being to the one we knew during treatment. No longer as withdrawn, no longer as scared of running free… opening up to family members and not hiding away under my arm. To realise how those chemicals have affected him is horrifying to me.

Today was one of those days I am grateful over and over again, because we have this time to share with Ethan. Happy time, laughing time, playing time, learning time. Does not matter how long it may be… it is time after all.

 

My name is Gila Jacobs, my son Ethan is recovering from cancer. My husband and I are recovering from shock, stress, financial burdens due to medical bills and plain and simple exhaustion. This is our story.

 

Leave us a comment so that we can see whether we are delivering relevant information or not, and please share our posts :-D

%d bloggers like this: