Light at the end of the Tunnel

2nd October, 2016

My blog posts these days are few and far between. This is because i have less of an urge to publicize our cancer journey with Cody as well as less of an urge to talk about it all because we are living it every, single, day. However, it has been quite some time so its time for an update.

2016 has truly been the worst year of our lives as a married couple for Ben and I, or just the worst year of our lives full stop. The ONLY way i can describe what its like for your son to have cancer is that its like being on a really scary roller coaster that is constantly full of ups and downs and yet you can’t get off it. The last 6 months has just been up and down. Initially it was just a downer for the first bit. But when Cody gets a week’s break from chemotherapy we get on a high.

In our little family of me, Ben, Jack and Cody we all react off each other. If I’m in a bad mood, then it brings the mood down for all of us. If Ben has a bad day at work, we feel for him. If Jack has a bad day at school, we feel for him. And If Cody isn’t feeling well, we all feel his pain too. When i see what Cody goes through, when i watch nurses pierce his gentle baby skin to access his port, when i see him in tears because his body has a fever, when i have to hold his wriggling body down for every blood test, it causes my heart to physically ache for him. But. When he is feeling good and well, its like the house is just full of happiness again. We all feel happy. When Cody laughs at Jack making fart noises or when Cody shakes his little booty to that stupid Pen Pineapple song, my heart heals itself again.

The days when Cody is good gives me a glimmer of hope that he’s still there, our little Cody bear is still there. The Cody that goes to hospital and screams and cries all day is not the real Cody. So it is nice to know that even know he has been pumped with toxic drugs and his body has been fighting against itself, that the real Cody is still there.

Starting this Thursday, Cody will be starting a 5 day week of chemotherapy. Just like usual, same old, same old. The only difference is, this 5 day week of chemo will be the LAST 5 day chemo week! He then has a 2 week break (or thereabouts, depending on how his body handles the 5 day week) then he has a 3 day week of chemo. Then a rest. And then…that is the end of Cody’s treatment plan!

Cody will then have lots of tests done, CT scan, MRI, Ultrasound, etc to make sure that the cancer is gone. IF he gets the all clear, we then just go back for monthly reviews, but no more chemo. Apparently, his hair will grow back in about 6 weeks. His body might go a bit ‘funny’ such as eczema or hay fever because his immune system will start to work again. His immune system has been completely suppressed by the chemotherapy for the last 6 months, which is why he picks up pretty much every germ in the air. So it will finally start working and his body will return to working like a normal human again. His bone marrow will return to producing blood in a normal manner once again. But most importantly we’ll have the real Cody back to us every day.

I am so excited for his end of treatment, but very nervous. I don’t want to build myself up too much and keep thinking that its the end of our ride. What the hell would we do if they did all the scans and told me the cancer was still there? Or what if he had another tumor?
The one fact I am clinging to is about 2 months ago, the Doctor did a CT scan of Cody after the tumor was removed and we got the all clear then. The reason we still keep doing chemotherapy is because there is the possibility of microscopic cancer cells being left behind.

So, say everything goes to plan and Cody gets off the roller coaster, what are we going to do? First things first (cue Madonna) “HOLIDAY! CELEBRATE!”
Yep, definitely going on a holiday at the end of all this rubbish and i darn well say we deserve it. We have hopes to go to the Gold Coast at some point. Heck, I’d love to just move there, Ben could quit his job and we’ll live on a house on the beach and drink Cosmo’s all day in the sun, and my body will suddenly transform into that of Scarlett Johannsen and we’ll find a briefcase full of money…er, hang on I went too far didn’t i? Oh well, a girl can dream…

I am, however, looking forward to having a lot more free time on my hands.. Also, looking forward to not spending our weekends in a hospital room! We’ll have more time for our families and our friends and for each other. Me & Ben just want to be a normal family again and see our baby healthy again.

Thank you for your kind words, well wishes and messages.

– Elise x

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Codytherapy

4th May 2016

Hello Friends, Family and Strangers!

Just thought it was time to give an update on Cody’s progress. We are currently in week 3 of chemotherapy and so far so good.

Up until a month ago, I thought chemo was just one medicine called ‘chemo’ and had no clue as to how it all works. So I would like to give you all a basic idea of what Cody’s treatment is like.

It turns out chemotherapy is the term used to treat cancer, but consists of several different types of medicines given at different doses and stages so that the blood levels maintain a steady up and down level.

So during his first week of chemo, he had a 3 day week where he was treated with Doxorubicin, Vincristine and Cyclosphoside – big words huh? It sounded like gibberish to me at first too, but I’m slowly learning the words and pretending to sound like an intellectual when i say them. Except for when I stuff up the words and make up my own like ‘Cancer-oxide’ or ‘Chemo-cristine’.

During the Cyclosphoside days he will experience nausea, so needs to take anti-nausea medication. But the anti-nausea meds can make him constipated so we need to give him Lactulose to combat with that, its funny, but awful at the same time.

Week 2 and Week 3 we were only in for half a day, for Vincristine – this is the drug that makes your hair fall out. Aah, we all know that one!

Ive been checking Cody’s hair every night when I bathe him. Monday night was the first night I noticed hair loss but it wasn’t a big chunk of hair like I had imagined it to be. I rinsed his hair and a couple of strands came out & thought it could be nothing,  but when I rinsed a second time more hair came out. And now that I’m aware of it, I find when I stroke his hair now, usually a few strands come out. I’m assuming it might happen slowly. Ben is eager to shave Cody’s hair – and he will shave his own hair at the same time to match. I’ve had time to think about the hair loss and even though its like having a sticker on your head saying “Hey everyone, i have cancer”, his hair has always been thin anyway and he’s a boy, its really not a big deal to us.

So next week will be a big week of chemo. We will be in for 5 days worth of Cyclosphoside. Our doctor offered us the option of staying in clinic and traveling home each night, OR staying in the nice ward area and sleeping there for a week – We chose clinic. I have a Ben, a Jack, and a King Size bed waiting for me at home and that’s far better than what that the hospital can offer me!

A few people have mentioned to me that it seems odd that Cody is going in for treatment for a week here and then a day here so i hope this helps explains things better. Its all so his blood levels have a healthy up and down balance. The treatment plan that he is on has obviously been created to give medicine to Cody no more than what his body can handle. His blood work so far has been very much to plan, high one week, low the next, so that is good.

Cody. How is Cody going with the treatment? Well, if you came to our house any given day you would not know he was a sick little boy. He’s still full of energy and is usually running around the house or dancing most of the time. This is great and I’m cherishing it because I am fully aware he won’t be like this for long. He will soon get more anemic and sick. Surgery will be somewhere around week 6 or 7  and things will probably keep going downhill. Right now it is the calm before the storm.

When people say to me take one day at a time, I really do now, we have to! If I think about the ‘what if’s’ too much I would turn into a big Debbie Downer. So one day at a time, meaning today, Cody is a happy little chap, which means today is a good day 🙂

– Elise x