• A favourite blanket, pillow, or pillow slip from home can be very comforting.
• A small bean-bag or kids bean-bag chair can help get your child in a different position on the hospital bed or encourage movement and play on the floor close to the medical pumps. A portable folding lap desk is great for craft and drawing.
• Converting your child's favourite doll or teddy bear to look more like your child can be helpful. Put face tape on the toy and even add a central line dressing — ask a nurse for some spare central line cords. It really helps to let your child do to the toy all the examinations done to them: temperature checks, blood pressure, blood test, dressing or NG face tape changes. There may be times when your family is isolating — in the lead-up to scans, surgeries, general anaesthesia, review appointments, the start of a new cycle of treatment, mid-cycle if white blood cells are low, or when your child or other children are unwell. Isolation can be long; check our website for resources to help cope and manage.

• A device with soft dream music is great for babies. Other parents are generally happy to accommodate low-level gentle music.
• Have a strong sleep association tool — a wrap, blanket, dummy, sleeping bag. Follow the same routine you would at home as best you can.
• Ask about medications and observations that need to be done close to your little one's sleep time — sometimes they can be brought forward to help with uninterrupted sleep.
• Understand overnight obs and medications and how they'll impact your overnight routine and any procedures the next day. Sometimes nurses can be flexible to assist with your routine.
• At times you won't have the chance to go through your normal bath routine. Start using a scented moisturiser or baby lotion at home during baths and take it with you — the scent helps signal sleep time.
• If you want to know what's happening at your baby's bedside while you're in the lounge or shower, take your monitor with you, especially in an isolation room. It can give a little extra comfort.
• For exceptionally inquisitive babies, fix baby blankets to the cot sides so there's less to look at. Ensure they're fixed well — double-sided tape is a good tool. (Make sure the little one can't pull them in on themselves.)
• Playmats with toys (jungle gyms) can fit perfectly within the cot bed and help entertain your child. Measure the width of the cot before going to a baby store.
• Therabands (sporting resistance bands) are excellent tied over the top of the hospital cot. Tie a loop in each end and place over the corner of the cot — you can then hang toys or ribbons during playtime.

• Familiar toys and blankets provide great comfort to older children — bring a few items to help them feel less stressed.
• Portable DVD players or tablets are a must to play whatever entertainment your kids enjoy.
• Take a storage container for any toys and games. It makes room changes much easier.
• Social connections through gaming and apps can help keep in touch with friends and family.
• To catch up on school while in hospital, there is a non-profit called "Missing School" (Canberra, ACT, founded in 2012). They can be utilised when a school-aged child is an in-patient. missingschool.org.au
• If your child is over 12 and missing school, there's a charity (Canteen) that may provide a robot. The robot sits in the child's seat in classes and allows them to video call in.
• Some children with neuroblastoma may need hearing aids. The fitter can name them "(Child's name)'s Super Ears" or similar. Hearing aids can connect to bluetooth on tablets and other devices.
  • Teachers can wear a device on a lanyard — a Roger — a wireless hearing aid microphone that overcomes distance and noise. Any teacher can wear this for different classes.
  • Battery changes are simple — your child can do this themselves.
  • Local Hearing Australia staff can have regular meetings.
  • Molds can be brightly-coloured or neutral. Molds are encouraged to be redone every 12 months as children grow. Depending on age, hearing aids may have buds instead of molds.

Sleeping by the bedside can be uncomfortable — but there are ways to make yourself more comfortable.

• Add an eggshell mattress (cut to size at Clark Rubber) to the pull-out sofa. Cover with a fitted sheet and use the sheets and blankets supplied. Some parents place the sofa cushions between the supplied mattress and the eggshell mattress for added comfort.
• Use a blow-up mattress — they're comfortable and silent for the ups and downs during the night. Either one that fits within the fold-out sofa or one for the floor. Two warnings: blow it up before everyone goes to bed (the noise), and it can be cold on the floor (use an extra blanket). Check with your hospital first.
• If caught without your usual means, use the sofa cushions or extra blankets between you and the mattress.
• You won't often manage to drink a cup of tea or coffee while it's still hot. A thermos cup is essential.
• Headphones and your favourite entertainment device can be great. Nights and days can be long — with little ones sleeping it lets you take a few minutes' break.
• Some hospitals have programs where volunteers sit with your child while you run to the canteen or have a shower. Ask your local hospital whether this is available and to which wards.
• Some wards have laundry facilities for long admissions. Take your own washing powder and softener to avoid sensitive reactions to other detergents.
• Buy or get a friend to donate wireless internet for the hospital. Ask friends to keep magazines or books to bring in.

"My advice is — take a thermos! Good to not having to traipse to the tea lounge every 20 minutes."

— Kristina

• Neuroblastoma Australia has a Family Support Group. Meet others, get support, and reduce loneliness and isolation. The Neuroblastoma Australia private group on social media is another option for peer support.
• Affirmations and mantras can help. "Take each day as it comes." "Make the most of each day."
• Some parents find it helpful to look for the silver linings: making their child smile or laugh at least once per day, being assigned a single room.
• When a child is diagnosed there may be obvious signs (stopped walking) or vague signs (pain, irritability). Some signs in babies and toddlers can be missed because they overlap with teething or a virus. We hope you're supported to feel no shame, blame or guilt. Sometimes it takes multiple doctors and hospitals for a diagnosis. What we can do is continue to advocate for our child — there are many patient advocate skills we can learn.
• Community care and self-care have many benefits. One example: try A.C.E. activities daily, in balance. A.C.E. stands for Achievement, Connection and Enjoyment. One parent said they realised they weren't doing 'E' activities and tried to increase those.
• Other self-care examples parents recommended for stress management: hobbies, sport, gym, reading a book, getting nails done, having a bath, and seeing friends.

If you have other children and are experiencing family separation, it may help to:

• Write the siblings letters, send them messages (with emojis for younger kids), send audio messages.
• Regularly spend time with them via phone and video calls — it helps everyone feel a little better when you can't be together.
• Tell siblings information in an age-appropriate way to ease concerns.
• Include them in some way — ask them to write a get-well card or create a drawing to decorate the room's wall or door.

"The best thing we did was buy a normal diary and we noted everything in it — bloods, procedures, obs, concerns, treatment, etc. It was very handy. A lot of families didn't think to get a diary and don't have a record of the treatment."

— Tameka, Nixon's mum

• Keep a note of your child's symptoms and side effects. The treating team may ask regularly for updates. Reporting symptoms helps them make decisions about fluid retention, introducing or reducing medicines, etc. Especially if you're unsure of significance — showing the symptom diary can help them identify emerging patterns. Keeping a symptom diary is part of our patient-advocate role and helps ensure signs aren't dismissed or overlooked.
• Symptoms can be tracked in an old-fashioned diary or notebook. A digital option: a WhatsApp group or notes app on your mobile. Include everyone who looks after your child and ask them to note temperature, nappies, coughing, adverse symptoms, weight, etc. An advantage of a digital record is the search function if the treating team asks you to recall specific symptoms.
• Using the whiteboard in hospital rooms can be helpful for nurses and staff. It can also give a sense of purpose during long days.

• It can be overwhelming taking in all the information. Some parents record meeting audio on their phone or have a support person on speakerphone, especially for bigger-picture discussions — useful when your partner can't attend. Audio recordings help you share with your support network or replay to understand certain things. Make sure to gain consent before recording.
• Write questions down for the treating team when you think of them. Keeping a list relieves some pressure on your memory, which can be strained during stress.
• During meetings, it can be easier to read out questions from a list, especially for topics that are hard to bring up.
• Have a conversation with your nurse about your child's usual routine to align expectations. Flagging when your child is next due for a nap may mean certain nursing tasks can be brought forward or pushed off — especially helpful for babies and toddlers who have day naps, when nurses have clashing demands of hourly obs.

Download list of induction topics

Central lines can be quite confronting when they are first put in. If possible, see if you can see a real-life example of someone who has a line beforehand.

It is important to remember that when first put in, it will look sore, a bit bloody and quite horrible — but it heals and will soon look much better. There are also other options such as portacaths and double portacaths — discuss with your doctor to decide what is best for you and your child.

• Check the central line exit and insertion points as soon as they've been inserted. Some children's neck insertion points don't seal straight away and need antibiotic gel applied regularly. The body's healing is reduced while on chemo — get on top of this straight away.
• For highly sensitive babies, avoid scented bath oils. QV wash is a good alternative, though some oncologists recommend the J&J lavender wash. Lavender is also a great relaxant.
• For sensitive patients, use saline and gauze instead of chlorhexidine sticks when cleaning the site for dressing changes.
• Micropore tape is great for sticking the Lumens to sensitive skin and is easy to remove.

• To stop the lines rubbing skin, sew a little sock of material and fix it at the top of the lines with tape. When learning to roll or having tummy time this prevents the plastic clips catching or digging in.
• Whatever you use must be easy to remove — dressing changes and line flushes happen each week.
• To prevent little ones pulling the lines, dress them in full piece jumpsuits, singlets or t-shirt suits that clip at the bottom. This hides the lines when not in use and lets you feed them through between the legs when needed.
• For small babies, 'Love to Dream' style swaddle suits are great — they give access to central lines or underarms without nurses needing to wake the baby. Transition suits with arms that zip off can have press studs added to the front for easy central line use.
• During treatment many people stick the lines to the back of tops so they don't get in the way or become something to chew while chemo is being administered.
• For younger babies, a newborn insert or layback bath seat is helpful.
• Some volunteers at the Children's Hospital in Randwick make little socks that go around the lines to prevent tangling — ask around to find someone who does this.

• There are some common complaints with central lines — both after insertion and during subsequent accessing for cleaning and treatment. Mostly they don't happen and it's best to discuss with your doctor or nurse.
• The neck can be stiff and sore after insertion — immediately afterwards your child may appear to prefer looking in one direction.
• Medicines can often feel cold when going through the lines.
• The feeling can be unsettling when lines are being flushed and used, but it's something kids get used to quite quickly.
• Changing the dressing can cause anxiety for many children, but babies often have no reaction other than disliking being held down. Dressing changes can occur while your child is sitting on your lap, facing out, being distracted — good distractions include The Wiggles on a tablet, a Child Life Therapist, or your support person.
• There are many dressing options if your child is sensitive — keep trying different ones. For very small babies the one-hand dressing works well as it's smaller.

It's important not to get the central line dressing wet — baths can be challenging. Your choice depends on your child and their age, but here are some ideas:

• For younger babies, a layback bath seat is excellent (available from places like Babies Galore). Fill the water part way so the baby can feel their feet, but it stays away from the lines.
• For added protection, tape the lines onto their shoulder and place a folded face washer on top of the dressing to prevent splashes.
• Worried about central line cords and NGTs getting tangled during play or bath time? Consider making or buying a bandage-style top that keeps cords safely tucked away.