The ‘C’ Word

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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”
“No.”
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?”
“Yes”
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
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35 thoughts on “The ‘C’ Word

  1. Oh ben elise jack and cody please know you are in our thoughts and prayers and know our hope for the future is bright even if this system casts such dark shadows on our lives now. May you have the strenghth you need to cope and remember the whole association of brothers that you know will be there for you if and when you need them. Love to all your family! May jehovah be with you.xxxx

    Liked by 1 person

  2. This life is so unfair sometimes. I am so sorry to hear about Cody. I know you guys have lots of family and friends that love you very much and will support you through this challenging time. My thoughts and prayers are with you all Natasha xoxo

    Liked by 1 person

  3. Hi Elise. I felt compelled to write after reading your raw blog. We’ve never met, so I’ll briefly explain who this intrusive stranger is. Esther and I met while on the Inca Trail in 2013 and became FB friends. I’m also a doctor; previously in radiation oncology and now in anatomical pathology (the same type of doctor who will diagnose Cody’s biopsy).

    Thank you for your courage to share. It sounds like the original intention was as a therapeutic outlet, but there has been a greater effect. As I read this, it reminded me of the importance of my job, of making an accurate and timely diagnosis so that patients can get the right treatment as soon as possible. It’s easy for me, now in a lab and not dealing with patients, to lose perspective, but this serves as a reminder for whom I am working hard for and why it matters. Thank you once again for sharing.

    Liked by 1 person

    • Wow, thank you for commenting on my blog. And yes, your job is hugely important, we are putting so much faith in our doctors to fix our Cody up. I will do another blog once we get the biopsy results, thank you.

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  4. We were at WCH Friday also wish I could have helped out getting some food or just let Mama go pee or have a weep. Meeting other parents and children makes you feel a lil better but the unknown can truly overwhelm you. Take advantage of the WCH supports including Ronald McDonald place if you can have heard its a home away from home. Social workers and nurses and other parents have heaps of experience and hints n tips to help along this journey. Sorry you’ve been doing some of these tests and getting hit with hard news but truly you’re never alone neither is Cody or Ben or Jack they can always talk to Jehovah at any time. Hugs over next few days get some emotional rest and recuperation. Many prayers being said for you guys to endure this.

    Handy tip is to get yourself a notebook ask someone to be with you as support at appointments and write down notes for you if you’re not taking things in to look at later. Write up your questions also for medical team.

    Love to you all

    Liked by 1 person

  5. To my beautful daugter in law Elise I am so proud of the wounerful mother you have become to my two precise grandsons little jack and cody bear me and Di love you like a real daugter ,and just know we will be with you and Ben every step of the way and do what ever it takes to make our Cody well again

    Liked by 1 person

  6. We are so blessed to have such a wonderful daughter inlaw Elise , as a mum when your children are so young they only want you , so there is a lot of emotional pressure on you as a mum but you are doing great & as you said one day at a time . We are a strong family we will be there for every step of this process . Bill & I are so proud of you & Ben we know you are loving devoted parents & we love Cody & Jack as if they were our own children they are so precious xxx

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  7. Oh my goodness guys, I can’t begin to image the terror and pain you guys are feeling, my heart goes out to you all. May you always find strength in knowing that relief from this system is just around the corner. Our prayers are with you all, i am so sorry.

    Liked by 1 person

  8. Elise and Ben I was very saddened to hear your news. As a mother and grandmother my heart goes out to you. I can only imagine what you and all your family are going through. Wishing your lovely boy a speedy recovery. Your in our thoughts and prayers. Love Elise and Ray Schaefer. xx

    Liked by 1 person

  9. Dear Ben and Elise .how does one know what to say and to begin to be able to say anything that would make a difference to your lives in anyway as you are facing this very difficult tragidly,,well all I know what to say is hang to Jehovah more than you ever have before as you are going to need hid guidance in the decisions you make and the treatments you take and basically just to endure this emotional journey you are now facing together as a family,when I lost my baby Nicholas 20 years ago a brother wrote in a card to me “May Jehovah cradle you in his care and his loving arms’ and those words became something I thought about often and became reliant on as I just don’t know how I ever would have gotten through anything in my life without my loving heavenly father beside me all through my lifes journey so please know you are in our prayers and we all feel for you and all your extended families and we will continue to pray for all of you for a great outcome all our love the W illiams family Julie and roy and kids,

    Liked by 1 person

  10. This is such a great idea! Will definitely help you to process and to look back on when it’s all said and done. This is every parents worst nightmare but you guys will get through this. We love you guys and are so sorry it is happening to you. The kids said they want to help but don’t really know how 🙂 it’s so cute they don’t really get it but want to do something for you all. We are happy to do what ever it is you need to help you out! We are proud of you guys and the way you are handling everything! Love you all xoxoxox

    Liked by 1 person

  11. Hey Ben and Elise, that’s the most moving and heartbreaking story I have read in a long time. Such a great idea. I still clearly remember the moment I was told that my 4 yo nephew had lukemia. He is now 20. I can’t begin to imagine how you guy’s as parents are feeling. Just remember that Jehovah has every single tear that you have shed carefully kept in his “skin bottle”. He has your family in his right hand and his hand is never short. I am deeply sorry for what you are going thru but it is clear that you have a great cloud of supporters. You are in my prayers always. Vince. Xxx

    Liked by 1 person

  12. So sorry to hear your little codys devasting news. As a mother I cant imagine having to watch your little one suffering. Our thoughts and prayers are with you.

    Liked by 1 person

  13. Hi Ben ,Elise, Jack and Cody
    We are truly saddened to hear of little Cody’s devastating news. We pray to Jehovah that he will give your family the strength to cope at this very difficult time. All our love hugs and kisses
    Love Mauro & Mara

    Liked by 1 person

  14. My heart was breaking for you as I read this. But in a little while, Cody and your little family will get a new title. Cancer Survivors. It’s a badge of honour. Wear it with pride Poppet. It’s quite an accomplishment. But in the meantime, accept help, love and moments of peace and keep writing. It helps. I’m nearly 5 years cancer free. It wasn’t looking good for a while but here I am, surviving.
    You’re in our prayers.

    Liked by 1 person

  15. Hello Ben, Elise, Jack and Cody,
    As a mother and Grandmother my heart goes out to you at such a distressing time for each one of you. We all look forward to a time when there will be no more sickness (Rev 21:3,4 Isa 33:24) but in the meantime we have to deal with our health and the stress of it the best way that we can. Expressing yourself in this form is mentally a great start to accepting and coping with it and I commend you for allowing us to understand how traumatic this personal moment for you all is. May Jehovah continue to be by your side giving you all the strength and faith to endure this trial, our prayers go your way my dears, only wish that we lived closer to give you more support in the way of a meal or looking after Jack for you. We look forward to any news on Cody’s update, thank you. All our love to each one of you. Love Rasim & Jan

    Like

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