Clear Cell SarCODY

10th April 2016

So here I am on another Sunday morning. These days so much happens in one week it is very hard to remember what day it is.

After writing my blog last Sunday, I felt as if a huge weight was off my shoulders. The messages I have received since writing the blog have been truly overwhelming and comforting.

A friend suggested that I start a “Go Fund Me” account. I had never heard of the website, and went to investigate. The pages were filled with emotional stories of people in similar circumstances as us or people trying to raise money to help others less fortunate. With Ben needing time off work, I decided to start my own “Go Fund Me” page, assuming people would donate and we might have a spare $200 in savings. Well, the prices went above and beyond that and each time someone donated, Ben and I were very emotional and thankful. For those that donated, please know that you are helping take some of the stress out of our hands. This money means, if Ben needs a day off (e.g- In the last 2 working weeks he has had 7 days off) that we do not need to worry so much about our electricity, gas, phone, water, mortgage, rego, groceries, etc.

Last Wednesday was the big day we were waiting for. Cody’s Biopsy results. Ben worked in the morning and Me and Cody took Jack to school. Now the night before, I noticed the rear left tyre of our car had gone flat (you know, cos we’ve had such a BORING week after all). Ben was worn out Tuesday and quickly changed it over to a new tyre, which was a little flat, and told me to put air in it before school the next day, which i did, all good.
Wednesday, I dropped Jack off and went to drive home. As i got closer to home, the back tyre made a little bit of a noise but i kept going. I turned at the roundabout just around the corner from my house, the noise got louder, so i slowed to 20km. I thought if i went slow i could get home, i was so close. Nek minute…BANG! The rear of the car slides on the ground, the Tyre flips off and bounces down a nearby street like Bugs Bunny, boing boing boing! The car stops sliding because i must’ve braked at some point. I know all the men reading this are cringing and saying “Why didn’t you stop the car immediately?!” (Well, at least Ben is saying that).

I sat there, looking out the window, watching the tyre bounce down the street. I may or may not have said a swear word really loud at this point. Cody starts crying from the backseat. I get out the car. Suddenly a rain cloud appears above our area and it starts pouring with rain. I ran down the street to pick up the tyre. Nope, that ain’t happening, turns out Tyres are really heavy. I rolled it back with one hand while using the other hand to try to ring Ben…”Hi, you’ve reached Ben, I can’t get to the phone right now…” stupid message bank. I looked at the time, it was 9.30, we had just under 2 hours to fix this situation so we could get to our doctor’s appointment in the city. I thought to myself “Wow Satan, you’re doing a great job today!”

I rang Ben’s dad and he was on his way to help, but he was working half an hour away. Suddenly, a man pulled up in a ute and got out his car to look at the wheel. He told me there was no damage and said he could put the wheel back on. I gave him the jack and off he went working away. This stranger, asked me where I was off to today, so i told him my story about Cody. This man reassured me ever so kindly that everything was going to be fine. He told me he is a cancer survivor. He told me him and his wife lost their child at a young age and he told me his wife is currently recovering from a major operation. He assured me that you just keep going and you get through it. He fixed the Tyre enough for me to get home and went on his way. I regret not asking for his number or address because it honestly felt like God had sent me an Angel right when i needed it the most.

Ben and his dad got home and completely fixed the tyre and we set off for the hospital.

Our Oncologist met us and told us the Biopsy results straight away.
“It is not Wilms Tumor as we thought. Instead, it’s a more rare Cancer known as Clear Cell Sarcoma of the kidney. Its going to be harder and take longer to treat. Cody will now need both Chemotherapy and Radiation. We also need to scan his heart, bones and his brain to see if the cancer has spread”

We were in the doctor’s room for about another half an hour longer discussing things, but my memory is a little vague after this point. Me and Ben had walked in that office far too cocky, we had assumed that Wilms Tumor was the more common cancer so that’s what Cody had. We were not prepared for this news. There’s probably only a handful of 2 year olds in the whole wide world right now with this Clear Cell Sarcoma Cancer, why our Cody? Seriously? It’s not fair! I was so angry. Cody needed a scan of his heart in half an hour so we went for a walk to get lunch.

I rang my mum as I walked and told her the news. Her heart was breaking over the phone. None of us expected this. I hit a bus stop glass wall. Someone suggested i try some boxing classes, at this point, sounds like a plan.

Cody had his heart scan and the lady told us then and there that his heart was free from any cancer so that was a relief.

The next day, Cody had his bone scan. Instead of general anesthetic, they gave him medicine that makes him go to sleep. In most cases, it takes 5 – 15 minutes for the child to go to sleep. On our little darling it took one hour. He finally went to sleep and we put him on the bed to scan him. He woke up and started screaming. The nurses grabbed the special tape and started taping him to the bed. Cody broke through the tape twice, before crying himself to sleep. You see our Cody is a very strong little 2-year-old, this is good, this means he’s going to beat this cancer.

Friday, I took Cody to get his MRI done. We were sent to DOSA, so I expected to be there all day long as usual. At 8.15am they called Cody’s name and said they were ready, i nearly fainted, there’s a first! This time he did have a general anesthetic. I tell you, it never gets easier watching his eyes roll backwards and his tiny body go limp.

Our next appointment with the Oncologist wasnt until the following Wednesday. I assumed we wouldn’t find out the results until then. However, Friday at 2.30 I got a call from the doctor.
“Hi Elise, ive got the results from the bone scan and the MRI here already, would you like to know what they are?”
My heart stopped beating. In that split second if she told me the cancer was all through his body, my world would come crashing down.
“Yes please, what are the results?” I said scared.
“He’s fine, cancer free. Its gone nowhere else in his body, just the right kidney only”
My heart started beating again, and I let out a huge sigh of relief, followed by tears,
“Thank goodness, that’s good, good right, I mean , is that good news?” I asked.
“YES!” she said excitedly “It’s very good news, I’ll chat to you Wednesday”.

I hung up the phone and immediately dialed Ben.
“Ben, where are you?”
“I just pulled up in the driveway, why’s that?” he asked.
I bolted down the hallway and out the front door, and told Ben the news. He squeezed me and we both stood out the front of our house bawling our eyes out. We were so relieved that the cancer was in the one place only.

It is still going to be a long journey and harder than what we originally thought, had it been Wilms. But we all feel so determined to beat this. Cody is like a little Hulk, he is so strong and that fighting spirit is what will get him through this.

– Elise x



2 thoughts on “Clear Cell SarCODY

  1. i am so glad you are writing elise as I know it will help you so much not only does it help people know how to help you but will enable you to be able to process all that is happening ,its really encouraging to others to see your reliance on Jehovah too as we all know he is the only one who can help us in this wicked old system ,keep fighting keep your spirits up and I hope I can help in some way soon with some meals for the freezer , ill keep in touch love from the Williams family.


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