Admitted – 4^th Dec 17

Chemotherapy:

• Cysplatin
• Etopiside

Discharged – 8th Dec 17

Cysplatin is one of the most effective cancer killing chemotherapies.  We were told by nurses and other oncology parents that it is also one of the worst for side effects, notably nausea and vomiting and wow, did it live up to that.

The first two days she was quite ok and mostly happy but on night two, just after I had left with my Mum for the night, Erika threw up an entire bottle of milk and made a massive mess as Nicole wasn’t ready for it. The nurses cleaned it all up for her but it was a sign of things to come. She was given some Maxalon via her central line on top of her Ondansatron dose to try and stop more vomiting but it didn’t help much. The next two days were horrible. Erika was constantly nauseated and miserable. A small amount breast milk was all she could hold down and Nicole had to restrict this a bit so she could at least keep something in her stomach. She was getting plenty of fluids through her IV line so dehydration wasn’t an issue. From then on until a couple of days after the infusions stopped, she couldn’t hold anything down except the breast milk and she was just so unhappy it was breaking our hearts.

Over the next few days, we did get a bit better at predicting when she was going to vomit and had a pile of ‘sicky’ bags close at hand all the time but we still had plenty of messes and as Erika was cytotoxic from the chemo, we had to put gloves on before we could clean up and if Nicole got any on her, she needed to have a shower quickly. This was problematic too as Erika just wanted to lie on Nicole’s lap all the time so it was a twofold problem. Because Erika insisted on being on Nicole lap, Nicole got vomit on her often but then Erika would get very upset when she couldn’t be on her lap and she didn’t often let anyone else comfort her. As she wasn’t keeping anything much down, she began vomiting bile. Most people know how much that sucks.

 

To keep us all sane during this difficult time, we started allowing Erika to watch more You Tube videos. She was so miserable and they seemed to distract her a bit. Nicole had two phones so she was able to at least use hers at the same time as she was pretty much a captive. She watched mostly educational stuff for little ones and learnt her colours, letters and numbers from this. She also loved Peppa Pig which Nicole and I found quite amusing too. Plenty of sneaky humour only adults would get made us smile. Nicole was worried she was watching too much but I tried to reassure her that hopefully, once the chemo finished and the nausea stopped, Erika would be happy to play again.

I also spent more time on my phone and Ipad watching movies or playing games. Whenever they were both sleeping I tried to take walks down to Southbank and just sit somewhere watching the water. It helped me relax a bit and get some sun as we were stuck inside a lot.

When Erika was an inpatient, I would walk around from our CCS house as soon as I heard from Nicole in the morning and would stay at night until they were settled, as late as 10pm or sometimes later. It was a long day but at least I got to go and sleep in a comfy bed and have uninterrupted sleep. Nicole wasn’t getting that opportunity at all and she was becoming overtired and restless but there was really not much chance for her to have a break when Erika was so sick. Nicole felt she was losing herself, morphing into a part of Erika. I could see it happening too. She is normally very creative and needs to be doing something to relieve stress and depression but there was no way she could do anything for herself. Just having a shower was a big deal.

There were nights when I felt I should just curl up on the spare bed in the room and stay at the hospital so I could help her during the night too but Nicole insisted I go home and have a decent night’s sleep so at least one of us would be well rested for the next day. During the night the nurses were more available so I felt a little less guilty leaving once the ward had settled down a bit for the night.

I was dealing with most everything that needed to be done that Nicole couldn’t do. If we were able to handle cleaning up ourselves, we did. The nurses were usually quite busy but were always happy to help when we asked, they just couldn’t always come straight away.

I would get meals from the trolley and on the days when that was inedible, which was most of the time, I would head down to a café downstairs or somewhere nearby and get us something decent to eat.

Erika learning colours with Gran before vomiting set in.

During this round, we were sharing a room with a little girl who also had neuroblastoma and was on round 5 which was the same as round 3 which we were on. The little girl, who’s family were also from Toowoomba, had been diagnosed quite late with a huge tumour in her belly as many seem to have. She gave Erika a little pink doll to keep which was so sweet of her. Her Mum was coping as best as she could. She had 3 other boys who were all older than the daughter. I don’t know how they did it. We were quite grateful at that time to only have Erika to care for. It meant she could be our main focus and we didn’t have to worry how the situation was effecting any siblings.

My Mum visited again during this round and the extra pair of hand and emotional support was wonderful.

Once discharged from hospital, the vomiting settled down but we kept up the Maxalon for about a week and Ondanzatron permanently.

Erika slowly improved and began eating again which was just great as if she hadn’t, we would have had to put in a nasal gastric tube and begin fluid feeding.

Cricket with Mummy and Daddy.

On the 20^th, Erika had a multitude of tests to see how effective her treatment was so far. She had an MRI, CT scan, BMA, MIBG and urine tests. She had 2 more general anesthetics for these. The results were promising; her primary tumour had shrunk from 3cm to 2cm.

After two weeks in Brisbane and her numbers coming back up again, we were just wrapped when Doctor Tim told us that we could go home to Toowoomba for Christmas, something we thought would be out of the question. We had been racking our brains trying to work out how we could have Christmas in Brisbane and still share it with those closest to us.

Erika ‘helping’ me with  Christmas decorations

 

In Toowoomba we still had to be careful and not expose her to too many people but we could go home. It was a wonderful time as Erika continued to improve and she enjoyed opening presents and seeing everyone again. We decorated our Christmas tree with pink for her and felt so fortunate to be able to do this but all too soon it was over and on Boxing Day, we packed up and returned to Brisbane to begin round 4 of chemo the next day.