Urine test(an external collection bag with an adhesive surround for attaching on the skin (check for catecholamines levels. This is a chemical produced by the adrenal gland and excreted with urine. Levels will be much higher than normal in neuroblastoma patients)
Cannula inserted in back of her hand and a small splint and bandage to keep it in
Blood tests (full blood count and oncology profile)
General Anaesthetic for central line insertion, BMA (bone marrow aspiration) and biopsy of lump next to her eye
Another general anaesthetic for CT (computed tomography) of chest, full body MRI (medical resonance imaging)
Confirmation of Neuroblastoma
9th October 2017
Following the hour and a half trip to Brisbane, which seemed to me like hours, we arrived at the emergency ward of the Queensland Childrens Hospital. We were indeed admitted and the oncology doctor on call, Doctor Tim, came to the ER to see us. He became Erika’s doctor and we found immediate comfort with him. He was so obviously knowledgeable, didn’t dumb things down and was honest but compassionate at the same time.
A cannula needed to be inserted in the back of Erika’s hand for blood tests. Jason braved it and stayed to help and comfort Erika while the rest of us took a short walk. A urine bag was placed on Erika, and the sample was also taken for testing. Removing the bag afterwards was traumatic for Erika. It hurt. Almost every day over the next 20 months, there would be something she would have to endure against her will. I found this heartbreaking and if not needed to help, I would leave the room. Apart from that first cannula insertion, Nicole always stayed, even though the nurses told her, she didn’t have to. I felt guilty but Nicole reassured me that if there was no need for me to be there, then I shouldn’t have to witness it.
Erika kept lifting her hand up to Nicole and grunt, meaning “Mummy please take it off”. We thought she was most likely left handed, like her Daddy by this stage and she coped quite well really. The collection of stuffed toys had begun. The white and purple one was her first cancer bear. She ended up with several of these. Unfortunately, she came to view all stuffed toys (except her Puppy of course) as someone with an ulterior motive and wanted nothing to do with them until recently. Rest assured, any stuffed gifts she received are now dearly loved.
At around 9pm, Owen and I decided to return home for the night, rather than worry about where to sleep, and we would return the next morning.
To my surprise, I slept well that night, but when I woke early the next morning, I sobbed uncontrollably, and Owen comforted me. He was still holding onto the hope that this was just an awful mistake and so was remaining strong. And then, I made the conscious choice to just get on with it. I decided, I would allow myself to have a cry first thing each morning but then I needed to pick myself up and keep moving ahead. I can honestly say I didn’t cry near as much as I thought I would after that. I even tried; thinking I was holding back and that it would not be great for my mental health long term but it seems you just can’t schedule your emotions.
Over the next few days, I recall several moments with such clarity, as if I was right back there again but much of it is blurry.
I recall the dreadful prospect of having to make phone calls to tell family and friends what was happening. The thought made me sick to the stomach. How do you say it? How do you hurt someone you love with this kind of news? I could not face this so Owen bravely took on that task for our side of the family. I don’t know how he did it. I couldn’t even listen. I should have been by his side while he made those calls but I wasn’t.
Our son Alex had been to Bathurst for the ‘Big Race’ with friends. He was so excited to be going and we had to burst his bubble. It would be the trip he will always remember for the wrong reasons. I felt such guilt. We made the decision not to tell him until he was almost home. Owen also made that call. After hanging up the phone in the car he was passenger in, Alex told me, he screamed in anguish.
My mum told me later when she got off the phone with Owen, she swore, repeatedly and badly (for my mum) and then she was left to notify my brothers. My heart would have broken if I had to make all those calls. Owen also called his sister and she passed it on to the rest of his family.
I don’t know why but I felt responsible for everyone’s anguish. It even briefly passed my mind to try to not tell anyone or delay it or something. There’s something about hurting love ones with bad news that just rips you apart. No particular words are better than others. Nothing makes it easier.
I recalled Nicole saying to me ‘if she’s going to die, can she die now so I can just crawl into a big hole and never come out”. I thought, if Erika doesn’t survive this, how can Nicole and Jason go on. How does anyone live after losing a child? I had to drag my thoughts back. We didn’t know this was going to happen, only that it could. Nicole also begged me to never leave her in Brisbane on her own, which I promised wouldn’t happen and it didn’t. Someone was always there for them both.
During that first night, Erika and Nicole were sent to a private room on ward 10 A. Jason stayed, and slept on the floor next to Nicole on just a blanket. Not usually allowed at the hospital but neither of them could be alone so the doctors and nurses were very understanding.
After that first night, we were given accommodation at the Ronald McDonald units at Herston on the other side of the river in Brisbane. There was nothing available at their units close to the hospital but as soon as there was, we could stay there. We were so grateful for this facility though the thought of driving to that side of the Brisbane river scared me. I was still trying to get my bearings around the hospital. Owen stayed with me for that first week so I don’t think I ended up having to drive over there anyway. We came back to Toowoomba a couple of nights during that time to get more supplies and see other family.
Erika loved this car. We would take turns to ‘drive’ her around the ward. It helped pass the time and kept us occupied too.
The very next day, Erika began the myriad of tests required for an accurate diagnosis.
She had the first of countless general anaesthetics over the course of her treatment. She had a central line inserted, which was to stay in for the duration of her treatment. A BMA and biopsy were taken while she was under for this. The next day, she had another general for a CT scan of her chest and full body MRI.
Later that first week, I really can’t recall which day, Doctor Tim, entered the room with the news we were hopelessly hoping against. She indeed had Neuroblastoma. Her primary tumour was on her left adrenal gland and she had secondary tumours scattered throughout her little body; the one next to her eye, another smaller on her other eye, a substantial sized one on her hip and multiple smaller ones on her skull and various other bones around her little body, as well as in her bone marrow. This was stage 4 cancer and Erika was just 16 months old.
Swelling and bruising from Erika’s biopsy. It would get worse before it got better. The bruising came and went several times during the treatment.
Nicole asked Dr Tim what her chances were. He said he didn’t like to use percentages because recent advances in treatment have skewed those numbers. He simply said she has more than 50% chance of survival. Nicole said that was all she needed to hear to give us hope.
Once her diagnosis was confirmed, she was transferred up to the oncology ward 11B. Around this time she had her first of many blood transfusions, as it had begun to take a toll on her body. The cancer cells were taking up room in her bone marrow and this meant it couldn’t create enough red blood cells. Her blood count was ok but lower than normal so the transfusion was given to prepare her body for her first round of chemotherapy.
I remember thinking what a big deal a blood transfusion was but they became quite regular and were just another facet of her treatment. We were so fortunate that there were always blood products available for her. Blood donations are vital for kids or anyone suffering with cancer. I never realised how much, but now I do.
Owen finally broke down and cried when just the 2 of us were taking a walk outside, He told me he didn’t remember crying when his Dad died after a 4 year battle with colon cancer when Owen was barely 20 years old. Comparing it to his own Dad with whom he had a close connection, and was so much like, was his way of telling me how much this hurt. He had to stop and sit down in a very public place. He had convinced himself it was just a mistake. He couldn’t anymore.
I recall all the cheerful nurses, happy parents and the upbeat atmosphere of that oncology ward. How can they possibly be happy? How can they carry on? This is a kids’ oncology ward. This place should not even be a thing. Just stop it!
Outside, the world kept turning. I hated it for that. Doesn’t it know, our world was crumbing and it didn’t have the courtesy to STOP!!! I needed it to stop so I could get off it for a bit, gather myself together, take a lot of big breaths and then deal with it. But there was no time for this. Chemo would start immediately.
