Admitted – 9^th Nov 17

Chemotherapy:

• Cyclophosphamide – 5 days – 1 hour/day
• Topotecan – 5 days – 30 minutes/day

Discharged – 14^th Nov 17

Readmitted – 19^th Nov 17

Fever – (febrile)

Round 2 was the same chemo as round 1 but because the risk of tumour lysis had passed, Erika wasn’t on continuous fluid though she had to have several hours of fluids before, after and during each day’s infusions as cyclophosphamide can scar the bladder and flushing the bladder helps prevent this.

Admissions for chemo rounds were done through 5C, the out-patients oncology ward, where we had to turn up around 7.30 so fluids could begin. The first day’s infusions were done there and later in the day we were transferred up to 11B, the in-patients oncology ward. Sometimes it took all day for a bed to become available on 11B but we always had one by night fall.

Anti nausea drugs were given an hour before the first infusion started, as they were in round 1 and they continued six hourly for the duration of her stay and for a day after chemo is finished for the round  and as needed after that. Ondansetron became a standard medication for nausea. Erika developed a pattern of not eating at all when in hospital and slowly starting to eat again once discharged. Breast milk became all she would have so it was great that Nicole was still able to do this. It became known as Mummy milk and Erika knew how to ask for it and when one side was getting down she would say ‘other side’. It was so cute and such a blessing to have. It meant she didn’t have to have an NG tube until much later in her treatment.

Erika in 5C waiting for hydration to hooked up

Chemotherapy affects all cells that have a fast turn over life. Hair is one of those and Erika’s hair had been falling out in clumps since just after round 1. It irritated her and made it difficult to settle down to sleep. By this time we wanted it to just be all gone but putting her through clippering never really entered our thoughts. It would be unnecessary distress as she was already exposed to daily trauma. So we just waited. Other places it would affect were skin, lining of the digestive tract and bone marrow.

The bruising on her eye was coming and going a bit but most of the swelling from the biopsy was gone though I think we must have gotten used to it because if we held her up to a mirror, it was quite alarming how crooked her eyes still were.

Bruising and scar from biopsy

After Erika was discharged, we had to return to 11C to have an Insuflon injected. This was a soft cannula inserted into her leg that was used to give her daily injections of GCSF (Filgrastim). The injections were required to encourage her stem cells to enter the bloodstream for her upcoming bone marrow harvests. This would then be used for her two planned bone marrow transplants, eliminating the possible rejection issues associated with transplants from donors. Numbing cream was first put on the area the insuflon was to be inserted  (her outside thigh)but it was still quite painful as the needle was thick.

Once it was in, we could either bring her in to the hospital everyday to have them do the injection, or do it ourselves at home. We were a bit hesitant at the prospect of doing it ourselves but thought it was at least worth trying. Even with the insuflon in, the injections were uncomfortable as she struggled as we were doing it so we tried to push the medication quickly to get it over and done with. Doing this caused pain but we had no other way. This was a two person job and a third pair of hands would have been great but not often available.

We had decided it was always best to tell her what was going on, procedure wise and I think it helped in the long run. She grew to trust what we said over time. If we said it wasn’t going to hurt, she believed us and if it was going to hurt, we just had to hug her and comfort her as best we could. There were many times when she just could not be kept calm and nothing we did helped so we just had to hold her down to do it. Needless to say, it broke our hearts every single time. It never got easier.

I decided to set up a Facebook page to avoid a Chinese Whispers scenario and ensuring most people got information straight from us. It became great therapy for Nicole and I too. Talking about what was going on and sharing photos helped us to see that she really was still happy most of the time and that was important for now. It helped  us to see that we really were doing ok. The messages we received on that page helped us to feel we were not alone. I was also encouraged by another oncology mum, to set up a Go Fund Me page to raise some funds for Nicole and Jason as their finances would be stretched during her treatment. The generosity of people was and still is amazing to us.

There are so many questions we constantly asked ourselves about her daily wants and needs:

• Do we allow her this abundance of toys that accumulate and if we do will it spoil her? There were so many toys. Bravery box toys were chosen each week after her dressing change and they were a great distracter and helped her forget it afterwards. Visiting people inevitably came with toys which of course were appreciated and it helps people to feel like they are making a difference, and they do. We also bought her ‘prizes’ for being ‘brave’. We did realize that she may never get the chance to be spoilt if we don’t do it now and she did love new toys.
• Is she in pain or nauseated? What medications and how much should we give her?” Will she become dependent if we give her too much? We would be faced with increasing amount of pain meds over the course of her treatment. Oxycotin became our go to for pain for some periods and a morphine drip in hospital was required at times so fretting about paracetamol and Ondansatron, seemed silly further down the track.
• How particular should we be about her hygiene? We had some mixed messages for nurses, doctors and other parents. Everyone seems to have different standards with some saying we should wipe down all her toys with disinfectant wipes every day. In the end we decided to take Doctor Tim’s advice and be reasonable about it but he said’ you’ve got to live’. It was still quite difficult with a little one who likes to play on the floor and not wear shoes and Nicole mentioned many times that she could see germs on everywhere she looked. We developed a routine with her bottles and dummies and anything else that went in her mouth. We were lucky that she had never been a baby who put everything in her mouth. So we found our standard and just hoped it was enough. We were careful in public places, not allowing people touch to her and disinfecting tables and chairs when we ate out. We also avoided places where there were lots of kids. Contact with unimmunized children was a real threat and several measles outbreaks happened in Brisbane over the course of her treatment.

We were back at the hospital on the 16^th to see Doctor Tim and get the usual weekly dressing change and blood tests done. He was happy with how she was coping with treatment so far. This procedure usually took the better part of a day but it was close to the native bee garden and she loved to go out there to pass the time.

‘Talking’ to Daddy while waiting to see Doctor Tim

Erika’s Great Grandparents, Allan and Ronny Sims, had decided that instead of giving and receiving Christmas presents for this year, they would like to donate the money to the Childrens Hospital Foundation Telethon on the 19^th of November. We jumped on board as did most of our family. Erika, of course, was exempt from this. After all, this could be her last Christmas.

I developed a fortnightly routine of coming home to Toowoomba on the weekend when Jason’s parent were able to be in Brisbane from Friday until Monday and on the weekend Jace was only able to stay from late Friday till Sunday lunch time I would stay in Brisbane with my eldest brother and his family which was much appreciated. My mum managed a few trips down to us during the weekdays and that was just great. Owen and Alex came for a weekend around this time too which meant I didn’t have to travel that weekend and seeing them lifted our spirits.

Erika’s first day home after this round was not great. She was very grumpy and uncomfortable so we continued with anti nausea and panadol and within a couple of days she improved and besides having her insuflon injections, she was quite happy.

Erika developed her first febrile temperature (38C) on the 19^th. This was the first time so far that she was profoundly neutropenic (0 neutrophils).  If you present at ER febrile and neutropenic there is a pathway the hospital must follow. The antibiotic, Piptaz, which is a combination broad-spectrum antibiotic must be given within an hour of presenting  and bloods must also be taken for urgent tests. Piptaz is very strong and mostly only used for neutropenic patients with a fever. With no nutrophils, the body is very vulnerable and a nasty infection can be fatal. This whole procedure would become second nature though still concerning every time, as we were forced to go back to hospital with fevers after every single round of chemo.

We were given our first double room and it was not on 11B as they were full. This was quite distressing at first but something we had to get used to and after a couple of days, a bed became available in another shared room on 11B. The nurses on 11B were almost always oncology nurses and we felt much more comfortable being on that ward.  We shared this room with another neuroblastoma patient who was newly diagnosed and going through what we had a month earlier only this little boy was very sick and had a massive tumour in his belly. The chemo they started him on caused tumour lysis and he narrowly missed a trip to the intensive care unit. Nicole and this little boy’s mum got talking and they were a great support for each other from then on.

Nicole had been struggling with withdrawal from her antidepressants as we were unable to get in direct contact with the hospital psychiatrist. She had had come to see Nicole when Erika was first diagnosed and prescribed a sedative for Nicole to get through that awful first week. At the time, she indicated she would be able to write a script for her Setraline, should she need to but there was a breakdown in communication and Nicole was in a bad way until a nurse worked out what was happening and got something done about it. Not what Nicole needed at any time but with everything else going on, it was almost unbearable for her.

Once she got her meds and they started taking effect, and Erika’s blood tests came back clear, we were back on track again. The doctors said there could have been underlying infection that the piptaz had knocked or it could be just a reaction to being neutropenic but you absolutely cannot wait and see. Even though Erika’s fever stabilized within a couple of days, it was hospital policy the patients are not released until their neutrophils have started to come up again. By this time, we were due to come in for her bone marrow harvest so we weren’t discharged in between.

Erika and Mummy – brave smiles