First Port of Call

17th April 2016

Another week down. I am sitting here trying to recall the events of this past week and its all just a blur as most weeks are now. Thankfully Ben has just relayed it all back to me.Last Wednesday we met with our Oncologist who gave us a rundown of the Chemotherapy, how it works, side effects and a very rough schedule of the treatment plan. The first week of Chemo will be a 3 day week. Depending on the drug used (which apparently we will soon know all the medical names) our days of chemo in hospital will vary from one day a week to five days a week. If Cody gets a fever, allergic reaction, etc, the treatment plan goes out the window and we play it by ear.

Meaning, from now on, it is extremely hard to plan ANYTHING because it will all depend on Cody’s health. We just have to remind ourselves its all for the sake of Cody getting better.

Side effects of Chemotherapy vary from person to person. The hair loss will happen maybe around week 3. I am prepared for it. But the day it falls out, is going to be like another one of those cancer bombshells.

On Thursday, Cody had minor surgery to have his Chemotherapy port inserted under his skin. Once again, we were prepared for the procedure, but when they wheeled him back to the room after 3 hours of surgery, his small body had me and Ben in tears. He was still asleep from the General Anesthetic, however, he was sort of whimpering in his sleep and would cry out in pain here and there. I sat next to his bed for an hour watching him. I thought if I stared at him long enough that maybe I could use some sort of Jedi mind power to transfer his pain over to me, so that i could bear the load of the pain and not Cody. If it were that easy, i would’ve taken the cancer off him by now and taken it for myself, but unfortunately, it doesn’t work that way.

I stayed overnight with Cody in hospital, but neither of us had much sleep as a nurse came in every hour to take his obs. Cody would drift off to sleep, then he would roll over or make a noise and I’d jump up each time just to make sure he was okay.

The next morning, Cody needed an infusion of Iron just to make sure his iron & blood levels had a nice, healthy start before starting chemotherapy. We were told it would take 6 hours and we would be able to go home at 6.30pm that night. As 6.30 approached, I got excited at the idea of finally going home and seeing my Jack. Jack had his last day of school for the term and I couldn’t wait to see him and hear all about his day. 6.30 came and went, the infusion didn’t finish till 8 o’clock. The nurse came in and then said Cody needs another drip to flush it out and then had to observe him afterwards to make sure he didn’t have a reaction, we wouldn’t get out of there until after 9pm.

I rang Jack and told him that we’d see him in the morning instead. I was upset afterwards. Ben reassured me that this type of thing would happen a lot. However, it wasnt reassuring. It just sucks. I hate not being able to be a family each day. And even though its only early days, I already hate the hospital. The thing that makes it so hard is that I KNOW being at hospital and Cody getting his medicine is the only thing that will get him better. And I’m sorry if it sounds selfish, but I hate how our lives are now based in and around the hospital. The novelty has run out very quickly.

We got a storybook from the hospital that explains Cody’s tumor in a simple way to Jack. Jack sometimes wants to talk about it and other times does not. He has a simple understanding of what is going on. He knows Cody will be starting his medicine this week and that Cody’s hair will fall out. Jack is a real caring soul and when he gets upset, so do I and vice versa. Today at lunch, he just started crying and told me and Ben that he misses Cody so much when he’s at the hospital. It made me cry then, and guess what? Its making me cry now! I probably share far too much information on this blog, but hey, this is our life. Each day is different as a family. Some days we actually forget about it all and have a heap of fun, other days we’re reminded of the reality that we are facing.

Tuesday is Cody’s first official day of chemotherapy. I’ll keep you all posted.

– Elise x



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


The ‘C’ Word

3rd April 2016
I have always wanted to start up my own blog, but i could never think of a subject matter intriguing enough to do it. I am a stay at home mum of two beautiful boys, Jack, 5 and Cody, 2 and my husband Ben is a Gyprock Fixer. Sure, i guess i could write about life as a stay at home mum and talk about my day to day shenanigans of poop stories, how to discipline kids, how to bake cookies and how to start toilet training, etc but now, none of those ‘normal’ day to day things seem of any importance now. Literally, like Metallica told me “Nothing else matters”.
This last week has been the worst of our lives. With my insomnia kicking in, i thought of an idea, we wont be able to afford therapy, so my therapy will be just this, writing it all down. If i can get enough people to read my blog, it might be a good way to make a tiny bit of money on the side to help us out in the months ahead.
If the ‘C’ word offends you, yes, Cancer, grab your tissues now, or walk away because this is our cancer story.
In the last couple of weeks we noticed our Cody bear had a bit of a swollen tummy. We thought he was constipated so have been giving him lots to drink & purees, etc. On Monday morning he woke up crying and seemed very distressed, Ben pressed his tummy and he went hysterical. We’ve all had a round of colds so i was sick of going to our local GP, it was Ben’s turn, so Ben took Cody to the Doctors. I waited at home with Jack with not a care in the world, knowing full well that Ben would probably get sent home with a bottle of Coloxyl to get that turd out. My first bit of worry came when Ben got home and told me the Doctor wanted to arrange an Ultrasound on Cody’s tummy. Who would ultrasound constipation? Whatevs, seeing as the Monday was a public holiday, I’d just get the ultrasound done tomorrow.
Monday night, 1.30am (okay, no, technically that’s Tuesday morning isn’t it?!) Cody wakes up screaming and screaming, i cant console him. I press his tummy, that makes him worse. I give him Panadol and went back to bed. But i couldn’t sleep, something didn’t sit right with me and i could still hear whimpers from his bedroom. My mothers intuition kicked in and i told Ben i was going to take Cody to the emergency room, he agreed that was a smart idea and stayed home with Jack.
Modbury Hospital on a public holiday, i was expecting it to be packed, but it was completely empty, not a soul. Got in the emergency pediatrics straight away and the doctor saw us immediately. Cody was not impressed. I tell you this now, Cody is 2 and he’s a wiggler. We rarely take him to restaurants because its all too hard chasing him around. He also hates people touching and grabbing him. So that information alone has added to the stress of this week. The doctor felt his tummy and said there was something there, he just didn’t know what, and that’s when more butterflies came. Ive seen lots of doctors for every day things, and most of them talk in a monotone voice. But this doctor was talking almost enthusiastically as if he had found a challenge, this isn’t good news, i knew it then. Anyway the hospital doesn’t do ultrasounds at night, so i had to wait as planned for Cody’s ultrasound in the morning. The doctor sent us home with a bag on Cody’s willy to get a urine sample.
Got home about 4.30am and put Cody back to sleep and i got into bed with Ben. We were both worried so spent another 2 hours just talking. The Radiology clinic opened at 7.30am and i rang and got an appointment for 8.30am. I closed my eyes and went back into a sleep again. Crap, its 8.15am and i have to be there by 8.30am. It usually takes 10 minutes to get there, but with peak hour traffic, i didn’t arrive until 8.40am. I ran to the front desk with my forms from emergency room and told the girl how sorry we are that we were late, but this is an emergency ultrasound. The girl had a deadpan look on her face.
“Yes, but your 10 minutes late”
“I know, we’ve been in emergency all night, please can we still get in?”
“Well hold on, I’ll check with the radiographer” She rolls her eyes and makes a call and i hear her muttering “Yes, obviously, ok” she turns to me and says
“Yes, as I’ve already said you are 10 minutes late so there is no possible way i could let you in, we’ll have to simply reschedule you in”
“Please, this is an emergency though”
“Yes im sure it is, ill get you in at 11am” My heart sinks and i take a moment to restrain my self from punching her heartless face. I was a Receptionist too before i became a mum, she ain’t anyone special, get over yourself!
I went to the shops to kill some time and rang Ben and had my first cry. I got something to eat and then the phone rang. It was the clinic and a different, nicer girl on the phone that could get the ultrasound in at 10am. Woohoo!
Fast forward to the ultrasound, as i said, Cody HATES being poked and prodded, so getting pictures of his tummy was flaming difficult, lots of crying. At the end the Radiographer was super smiley and seemed a little nervous, i started to sense something was wrong. She then told me she just needs to go in another room and have a closer look because apparently she just “takes the pictures”. She left the room and i sat with Cody in silence. waiting. and waiting.
Then i hear the PA speaker go off “Could we please get Dr. So & So to look at a scan in room 6 immediately”. My heart sank and i burst in to tears, this isn’t good. I said a quiet prayer while i waited. Finally, 3 or 4 professional looking people came back in the room, all with fake smiles
“Hi Elise, and how are we going today?”
me – “Just tell me what it is…”
“Ok, we’ve found something on Cody’s right kidney”
Me – “Is it poo? because he’s been constipated”
At this point, they might as well have kicked me in the guts and it would’ve hurt less.
They continued…
“No, we’ve found a large mass on his kidney and we believe its a Tumor, we are booking you in to the Paediatrics outpatients right now for our head doctor to explain some more”
“Is it cancerous?”
The C word. He said my curly haired, blue eyed, train-loving baby has the C word inside his tiny body. There are no real words to describe how i felt. I guess i could say it felt like someone had come along, scooped all my insides out and left me a hollow shell. I was a mess. I rang Ben immediately in tears. Ben heard me crying and started crying too he starts shouting “What? what is it?” I let the words fall out “It, it, its a tumor, its a cancer tumor”. We both just cried. Its so hard typing out this experience, but i need to release it.
I told Ben he needs to take Jack to his mum’s house immediately and to come to the hospital. I rang Ben’s mum, Di. Still choking on the words, but managed to spit them out. Then the nurse came in and did the traditional thing that everyone does in a moment like this “Would you like a cup of tea sweetheart?” I must’ve said yes because she came back with one, but i didn’t touch it. She then sent me back into the waiting area. There i am sitting next to a bunch of pregnant ladies and blokes that have broken their leg on a motorbike, sitting holding Cody, sobbing. The pregnant lady asked if i was OK, i replied “No, i just found out my son has cancer”. I couldn’t bare to sit there any longer, so i put Cody in the pram and paced the hallways instead. I rang my mum, she didn’t answer, then i rang my dad and told him, everyone’s reaction is the same. Complete devastation.
Ben arrived within 10 minutes, i saw him at the end of the hallway and Cody got excited and ran up to him saying “Daddy, daddy!” all excitedly. We all just held each other and cried in the hallway. The deadpan receptionist walked passed us, she looked guilty, caught my eye and gave me a half smile. I looked at her like a Lion about to kill a Zebra in the wild. The cup of tea nurse led us to outpatients ward. We had to wait about 2 hours before we got to see the doctor. I cried for the majority of that time.
When we finally did see the doctor, she told us that Cody has a 10cm mass on his right kidney and believes it is called Wilms Tumour. I wanted to do an Arnie and yell “ITS NOT A TUMOUR!” but didn’t seem the appropriate time. She spoke a lot but i didn’t hear it all. She arranged for us to go to Women’s  & Childrens  hospital the next day for Cody to get a CT scan of the tumor because it will give us a better look of what we are dealing with.
We went home like zombies. Di came over and brought Jack home, i had missed him so much, and she made us soup for us. Me & Ben discussed if we wanted to keep this a secret or let people know. We figured we’ll tell close family & friends first and then a few more at a time. That night we rang some people to break the news. I honestly, felt sorry for them, because there is nothing they can say or do, to make Cody not have cancer, its just a helpless situation.
I tried to sleep that night, but instead spent most of the night crying. Night time is the worst, when the house is all quiet because your thoughts override you. I rang my mum at 2am, just to talk and cry.
The next day we went to Women’s & Childrens. I really had no idea what to expect. We were sent to DOSA (Day of Surgery Admissions). I hate DOSA, the novelty runs out bloody fast. DOSA is a big waiting room filled with toys and stuff which is good, but is overcrowded with kids needing obviously day surgery things like Tonsils removed, Grommits, etc. We got there at 7am and we didn’t get the call to get his CT scan until 2pm. 7 hours of being in a waiting room with a 2 year old fasting, he hadn’t eaten since 7 o’clock the night before. As soon as they called us in for the CT, the butterflies started again. Only one of us could go in at the start if the scan for him to take the General Anesthetic. We decided i would go with Cody. They prep you for exactly how he will go when they give him the gas, but theory is a different story to practical. When i took him into the room he was screaming straight away. He sat on my lap and it took 3 of us to hold him down. We put the mask on him and he was screaming. The more he screamed, the more gas he breathed in. The breathing turned into heavy gasping, he’s eyes rolled backwards and his whole body went completely limp. More tears from me. It honestly felt like he had been choked to death, but the doctors reassured me its all completely normal and fine. By the time i returned to Ben I was a mess.
Once Cody was returned to us and awake he was once again, hysterical and took another 2 hours before we could fully calm him down and get him to eat and drink again. After that the Doctors visited us with the CT results. They calmly told us that they believe it is Wilms Tumor on his kidney and its very big. I asked if they would need to remove his right kidney and the Doctor scoffed and said “Oh hell yes, that kidney has to go.” Another bombshell. They then went into details of the plan. At this point i had shut down, i couldn’t hear properly and had gone numb.
Luckily, Ben held it together enough to get the information. The plan was – 6 weeks of chemotherapy to start with to shrink the tumor. Right now, it was far too large to remove, so surgery right now would be too risky. So hopefully the chemo shrinks it. THEN, surgery to remove the cancer and the entire right kidney. Followed by another round of Chemo just to really kick it up the arse and make sure there’s not a drop left.
The next day we returned to visit the Cancer ward and meet our Oncologist. When we walked in, it was very bright and modern and far different from the chaos of the rest of the hospital. We waited in the playroom and sitting on a table was a big basket of woolen beanies saying “Please take one” I cried. Another bombshell.
It was just all suddenly made very real and i was aware that this ward is our new home. Our Oncologist was lovely, she’s a mum like me and i have a feeling we’ll get to know her very well as she’ll be taking us through this journey. I felt immediately comfortable with her and she is sharp as a tac, she knows her stuff. She showed us the picture of the CT scan and went into further detail. The first picture showed that there was a line distinguishing the difference between the tumor and the Liver, but then another picture showed there was no line, it looked like it was a little bit joined onto the Liver. Hopefully the chemo will take it off the Liver, but its possible part of the Liver might need to go as well. Good news is that the Liver regenerates itself so it’s going to be fine…i guess. There were some big lymph nodes near the kidney too that she’s hoping the chemo will knock out, so we’ll see how we go.
She decided that Cody would need a biopsy just to confirm its Wilms Tumor. How rare is Wilms Tumor you ask? A Wilms Tumor affects every 8 kids out of one million. The doctor told us to buy a lottery ticket, so funny, yeah.
9 out of 10 Kidney Tumors on kids under the age of 5 are Wilms Tumors, and Wilms is usually very treatable with Chemo. But there is the chance that Cody could be the 1 out of 10 that its not Wilms Tumor but a more different, rare kind that is harder to find the cure. Im not thinking about that right now.
Cody had to fast again for his biopsy the next day (Friday). I fed him heaps on Thursday night, but because he is still affected from the General Anesthetic, he vomited up everything that i fed him. We got to DOSA at 7am. They didn’t call him in for the Biopsy until 3pm. Another day, 8 hours of waiting, no food for Cody since the night before and he had vomited up what i did give him.
They had to give him another General to do the biopsy. I couldn’t handle doing it again, so it was Ben’s turn. Ben was brave and took Cody in the room, while i waited outside, crying and praying. Ben returned 10 minutes later, eyes swollen from crying and agreed, that watching Cody’s body go limp from the General is just the worst. It is awful to watch, but a necessary evil.
After the biopsy when Cody woke up, he was once again hysterical, We spent from 5pm to 10pm, trying to calm him down until he eventually fell asleep. Ben went home and i slept at the hospital next to Cody. Absolute crap day.
While staying overnight i met another mum in the coffee room who looked like me, a walking zombie. The coffee jar wouldn’t open so i started losing the plot, the other mum joined me, then we laughed.
I said to her “You tell me why your in here and then i’ll tell you my story…” This mum told me her 18 month old son was playing in the backyard and he tripped and fell over and started crying. When she saw him, she was horrified to find a stick had gone through her son’s eye and into his brain. The surgeons had to cut open his skull to treat him and she has no idea if he’ll ever see again through that eye. My heart hurt so much for her, i was devastated to what she was feeling. I told her my story and we had a bit of a laugh and a cry over a coffee. Two strangers just pouring out our hearts. And then Cody had a play with her son in the playroom. I don’t even know their names, but i truly hope their son will have a speedy recovery.
We left the hospital at lunch time Saturday and we wont get the results until Wednesday. Once we have the results Wednesday, Cody will then get his chemo port inserted under his skin sometime next week, which will mean he’ll need another General.
So here i am, Sunday morning, drained, empty but so happy to be home and knowing we don’t have to go back to hospital until Wednesday makes me feel like i’m on holiday.
Over the last few days more and more people have found out and i guess i might as well do a Facebook post. Not sure how to word it, the only wording i can think of is “Hey everyone, Cody has Cancer, peace out” but probably inappropriate. I feel like my personality is already changing, i’ve been a lot more blunt, insensitive to others and have had a lot of rage and of course sadness.
The amount of messages, gifts and love from our family and friends has been truly overwhelming. Me and Ben feel so loved and we know we are going to get through this because of that network of support. Any problems we have or have ever had between ourselves or other people don’t matter anymore. All that matters right now is that Cody gets better. So yes, one day at a time. WE WILL GET THROUGH THIS.
– Elise x