This is my favourite photo of Erika during treatment. She looks to me to be telling us “It’s ok. I got this”.

Admitted 22^nd January 2018

Cysplatin

Etopiside

Discharged 27th January 2018

Round 5 protocol was a repeat of round 3. We were fortunate that Erika’s vomiting wasn’t quite as bad as round 3, or maybe we were just ready for it. She was given anti nausea drugs before the chemo effect took hold and we learned that this was much more effective than waiting for symptoms. Though she did still vomit a lot and nausea was still a constant issue, she played happily some of the time and was discharged on Friday 27^th.

Sleeping in hospital. Those gorgeous long eyelashes were all but gone.

Dr Tim wanted a urine test again to measure catecholamine levels, so we had to put her through the trauma of a urine collection bag again. It was so hard putting her through these types of procedures, knowing how she would react but it was the best way. We were so happy that the results showed almost normal levels, meaning she had much less cancer in her system than previously.

The following week was a full one with her regular visit to the doctor, a platelets transfusion and an audiology appointment all on Monday. Her hearing was still showing no signs of deterioration (hearing loss is a common side effect of chemo). On Tuesday and Wednesday, she had to endure the MIBG tests again. Forcing her to drink the lugol iodine to protect her thyroid (it tastes horrible and burns the mouth) and being wrapped tightly (including arms) and placed on a board for 60 minutes the first day and 90 the second. It was just horrible. The results however were favourable. Still a couple of spots on bones with a small amount of activity elsewhere, (likely a few cancer cells) and at the prime tumour site but both were far less than before. Many of the previous bone metastases didn’t show up.

The following Friday she had an MRI, which she had a general anaesthetic for. These results were also positive. The primary tumour had shrunk from 3cm to 1cm. We were stoked and Doctor Tim was happy with how she was responding to treatment. There was still a fair bit of nausea and tummy problems and she needed regular blood transfusions to keep up her red cells and platelets.

Once we got through all the tests, Round 6 was now looming before we could catch our breath.

Erika playing with her bravery box selection in 5C

2^nd of February was also our first Frangipani Day which raises awareness and funds for research into Neuroblastoma. It was started by two neuroblastoma Mums, one of a survivor and the other not so lucky. They formed Neuroblastoma Australia to specifically raise funds for research to provide kinder treatments and a cure to this hideous childhood cancer. Since it began in 2010, they have raised over 1.9 Million dollars. There was a frangipani tree across the road from us in Brisbane and Erika loved them. We would go over and pick up the ones that had fallen from the tree. We managed a very cute photo of her with one in her hair. She didn’t like anything on her head for very long so we were lucky she let us. We use the photo each year on our social media pages to help raise awareness.

Frangipani Day for Neuroblastoma

Erika’s bravery beads were growing. It’s a great initiative of the Childrens Hospital Foundation. Oncology kids get a necklace with their name and they can get a different bead for each procedure, treatment or milestone.

Red Car is for first chemo

Blue stars for blood tests

Red Stars for blood product transfusions

Cats for scans and tests

Cone beads for injections, cannulas and infusions

Blue round for surgery

Red round for central line insertion

White Smiley Face for hair loss

Christmas Tree for each Christmas during treatment

We only kept a few Blue Stars as she had so many Blood tests. At the very least, she had weekly tests when an outpatient and daily when an inpatient (though sometimes much more than this. It was the same scenario with the Red ones, as we lost count of transfusions very early on. Even though she was too young to understand their significance at the time, we hope one day they will help Erika to understand all that she went through.

Erika’s Bravery Beads

During this time we were lucky enough to be able to move upstairs at our CCS house in Brisbane. We had been downstairs in a small 2 bedroom unit and we were so grateful for it but Erika was quickly outgrowing the room. The people who had been upstairs had finished their treatment and were heading home so we asked if we could move up there. It was at least twice the room we had downstairs so we were able to stretch out a lot more. It was quite a relief at the time. We were told when we first went there that we could use the veranda upstairs (which came off the upstairs unit) anytime we wanted to but we never did. It just felt like we would have been intruding on the other family. Different oncology families cope in different ways. Some rely on other oncology families for support while others prefer privacy. We preferred some privacy so we granted that to others too.

We were sad to hear that this particular family was back in Brisbane only a week after they had left. The teenage girl, who had been treated for Leukaemia, had become very ill with an infection even though she had finished her treatment. She passed away soon after that. She had told her Mum that she was done fighting and had nothing left to give. When we heard this, we were of course very saddened but it again made us realize the benefits of having a very young cancer patient over an older one. Erika’s inability to comprehend what was happening to her and the fact that we could force things on her (which sounds horrible because it is), was in some ways, a blessing.

We had managed to get ourselves into a good rhythm and just kept taking it one day at a time. Brisbane was feeling more like home to both Nicole and I and the city and its people were growing on me. This concerned me. At times I felt a sense of guilt. Feelings I really had no time to deal with. There was no time for self pity, so I began pushing it all under and focusing on helping Nicole and Erika to make sure they were coping.