A stay in hospital

Neuroblastoma Hospital Tips For Parents And Child

Drawn from real-life experiences of families that have been through treatment and parents who stayed in the hospital, here we provide practical information, advice and activities for children to help you prepare for hospital stays.

If you have hints/tips that you would like to share, please feel free to email [email protected]

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Hospital 

Staying in hospital is often tough for both parents and children. It is far from their normal environment, they don’t have their own things and it is often noisy and light throughout the day and night. Following are some tips to try and make the stay as easy as possible.

Firstly, regardless of your child’s age, it’s worth keeping a bag packed in the car with the basics. You don’t want to have to go to the hospital with a fever or equivalent and not have some fresh clothes and the right toys. You can’t always guarantee how long you’ll be in emergency so it’s best to be prepared.

The best thing we did was buy a normal diary and we noted everything in it including 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

Helping your Child

  • A favourite blanket, pillow, or pillow slip from home can be very comforting.
  • A small bean-bag or kids bean-bag chair can be helpful to get your child in a different position on the hospital bed or encourage movement/play on the floor close to the medical pumps. A portable folding lap desk is great for craft/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 to attach to the toy. It really helps to let your child do to the toy all the examinations that get done to them, for e.g. temperature checks, blood pressure, blood test, dressing or NG face tape changes! There may be times when your family is isolating. You might isolate in the lead up to: scans, surgeries, general anaesthesias, review appointments, the start of a new cycle of treatment, mid-cycle of treatment if your child’s white blood cells are low, or when your child or other children are unwell. The periods of isolation may be long. To improve capacity to cope and manage, check out several of the resources we provide on our website.

Babies

  • Having a device with soft dream music is great for babies. Generally other parents are  happy to accommodate low level gentle music.
  • Having a really strong sleep association tool helps as well such as a wrap, blanket, dummy, sleeping bag, etc. Follow the same routine that you would at home as best as you can.
  • Ask about any medications, obs, etc. that need to be done close to the time your little one goes to sleep and see if they can be brought forward a little to help uninterrupted sleep time.
  • Understand overnight obs and medications and how it will impact your overnight routine and any procedures you have the next day. Sometimes the nurses can be flexible to assist with your routine.
  • At times you will not have the opportunity to go through your normal bath routine. Start using a scented moisturiser/baby lotion at home during the bath process and make sure you take it with you to the hospital. You can use the scent that will help them know it is time for sleep.
  • If you want to know what is happening at your baby’s bedside, whilst you are in the lounge, having a shower etc, take your monitor with you, especially if you are in an isolation room. It might provide a little extra comfort that they are OK and you don’t have to be sitting next to them while they are trying to sleep.
  • Some babies are exceptionally inquisitive. If yours is,  fix some baby blankets to the cot sides so that there is less for them to look at (you will need to ensure that they are fixed well so that they little one can’t pull them in on themselves). Double sided tape is a good tool to achieve this.
  • Some playmats with toys affixed, a.k.a. jungle gyms, can fit perfectly within the cot bed and can help entertain your child. It’s worth measuring the width of the cot and then going to a baby store to see what you can get to fit.
  • Therabands (sporting resistance bands) are excellent to tie over the top of the hospital cot for a baby. Tie a loop in each end and place over the corner of the cot. You can then hang things like toys or ribbons from it during playtime.

Older children

  • Having familiar toys/blankets etc can provide a great comfort to older children, so bring a few items that will help them feel a little less stressed.
  • Portable DVD players or tablets are a must to play whatever entertainment your kids enjoy.
  • Take a storage container that you can pack any toys/games in. This makes it easier when/if you need to go through a room change.
  • Social connections through gaming and apps can help keep in touch with friends and family.
  • To catch up on school when in hospital, there is technology from Canberra, ACT called “Missing School”. They are a non-profit and were founded in 2012. They can be utilised when a child is school-aged and is an in-patient. http://www.missingschool.org.au
  • If your child is over 12 years of age and missing school, there is a charity that may provide a robot (Canteen). The robot sits in the child’s seat in classes and allows the child to video call in.
  • Some children with neuroblastoma may need hearing aids. The fitter can name the hearing aids: “(Child’s name)’s Super Ears”, or similar. The hearing aids can connect to bluetooth on tablets and etc.
    • Teachers at school can wear a device on a lanyard- called a Roger - that is a wireless hearing aid microphone. It helps overcome distance and noise to ensure the teacher's voice goes directly into one of the hearing aids. Any teacher can wear this device, if the child goes to a different class during the day.
    • It is simple to change the battery (your child can do this themselves). 
    • Local staff from Hearing Australia can have regular meetings.
    • If they have molds, these can be brightly-coloured or neutral-coloured. Molds are encouraged to be redone every 12 months because of how the child grows and changes. Depending on the age of the child, the hearing aids might not have molds, but be buds instead.

Download Helpful Hospital Packing List

Home and Life Organisation

  • Some ready-to-go meals in the freezer are really helpful for both home and for lunches/dinners at the hospital. This could be something you ask friends and family to keep in mind and cook for you. Or if they don't like cooking, you could ask for a voucher from a food delivery service (Dinner Ladies is pretty good!). 
  • If you are feeling overwhelmed with all the messages of concern and offers to help once diagnosed, you could nominate someone you trust to be your "family spokesperson." They can communicate updates, coordinate cooking rosters, food drop-offs, babysitting, and etc. They could use a WhatsApp group to coordinate regular communications, rather than your phone being flooded with individual messages (which you may feel obliged to reply to!). 
  • Ask your family and friends to organise themselves for visits. It helps you get through the very long days. It’s much better to have one visitor a day, every day or so. Rather than having all of them in the same day and no visitors the rest of the week.
  • If feeling inundated with offers of help and not sure what help to ask for, one response is asking them to consider donating blood or platelets with a friend and asking others to too. This is life-saving help, since many rely on these donors.
  • Sharing information publicly or maintaining privacy: It is up to you to share or not share details about your child’s cancer at your workplace, with colleagues, or in other social settings. We are all different and it’s okay to share or not share that you’re a carer and parent to a child with cancer. It’s okay for different people in your life to know varying amounts of information about you and your child.
  • Some employers are supportive and may approve flexible hours for you to spend more time with your child. Continuing employment can help some parents while your child is on treatment. Other parents may take leave, reduce hours, or cease working. During treatment, some parents retrain or study due to changed priorities and want a new career direction post-treatment.

Parents 

Sleeping by the bedside can be a fairly uncomfortable experience, but there are ways to help make yourself more comfortable.

  • Add an eggshell mattress (you can get one of these cut to size at Clark Rubber) to the pull out sofa to make it a more comfortable space. Cover it with a fitted sheet to keep it all together and then use the sheets/blankets supplied. Some parents even place the cushions from the sofa in between the mattress provided and the eggshell mattress for added comfort.
  • Use a blow-up mattress (they are comfortable and silent for the ups and downs during the night) – either one that fits within the fold out sofa, or one that sits on the floor. Two words of warning here though, make sure it is blown up prior to everyone going to bed as it can be noisy during inflation, and it can be cold on the floor so use an extra blanket. However make sure you check with your hospital.
  • If you are caught without any of your usual means, use the sofa cushions or a couple of extra blankets between you and the mattress and cover with the sheets/blankets provided.
  • Often you will not manage to make and consume a cup of tea/coffee whilst it is still hot. If you don’t already have one, and one is not provided to you, a thermos cup is an essential item to have with you at the hospital.

My advice is – take a thermos! Good to not having to traipse to the tea lounge every 20 mins.  - Kristina

  • Headphones and your favourite entertainment device can be great to bring along. The nights and days can sometimes be long and with little ones sleeping it enables you to take a few minutes break.
  • Some hospitals have programs where volunteers will sit with your child while you run to the canteen, have a shower, etc. Ask your local hospital whether this is available and to which wards it applies.
  • Some wards have laundry facilities for long admissions. Take your own washing powder and softener to wash your children’s clothes. This will avoid sensitive reactions to other laundry detergents.
  • Buy or get a friend to donate wireless internet for you to use at hospital. It allows you to keep in touch with the outside world and family and friends.
  • Ask friends to keep magazines or books to bring in for you.
  • Wash and repack hospital bag as soon as possible so that it’s always at the ready. This bag could be kept somewhere handy such as your car boot, your garage, or your child’s wardrobe. This bag could contain the minimum essentials in case a quick trip is needed, including one set of spare clothes and pyjamas for your child and yourself.

Family Support

For You

  • Neuroblastoma Australia has a Family Support Group. You can meet others, get support, and reduce loneliness and isolation. The Neuroblastoma Australian private group on social media is another option and is a way to receive peer support.
  • Sometimes 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: trying to make their child smile/laugh at least once per day, being assigned a single room on a ward, not shared.
  • When a child is diagnosed with neuroblastoma, there may be obvious signs (stopped walking) or vague signs (pain, irritability). Some neuroblastoma signs in babies and toddlers can be missed because they are also signs of teething or a virus. When reflecting on the time around diagnosis, we hope that you are supported to not feel any shame, blame on yourself, or guilt. Sometimes it takes multiple doctors and hospitals for a child to be diagnosed with neuroblastoma. What we can do is our best by continuing to advocate for our child. There are many patient advocate skills that we can learn, improve and use.
  • Community care and self-care can provide you with many benefits. An example of self-cafe is trying ACE activities daily, in balance. A.C.E. stands for Achievement, Connection and Enjoyment. A parent said that they realised that they were not doing E activities and tried to increase those.
  • Other examples of self-care that parents recommended to help with stress management include: hobbies, sport, gym, reading a book, getting nails done, having a bath, and seeing friends.

For Siblings

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

  • Write the siblings letters, send them messages (if young, messages with emojis), send audio messages.
  • Regularly spending time with them via phone and video calls to help everyone feel a little bit better, as it’s hard when you miss each other and can’t be together.
  • Tell siblings information in an age-appropriate way, can help ease concerns.
  • Include them in some way. Ask them to write a get-well card, or create a drawing or painting to decorate the room’s wall/door.

Recording your Child's Symptoms

  • It can be helpful to keep a note of your child’s symptoms and side effects. The treating team may ask you regularly for an update on any symptoms that your child is feeling and experiencing. Reporting symptoms can help the treating team make decisions about fluid retention, introducing or reducing certain medicines, and etc. Especially if you are unsure of what it means or any significance. It can be useful to show the symptom diary to your child’s treating team, as it can help them identify emerging patterns. Keeping a symptom diary can be part of our role as patient advocates and we are helping to ensure signs are not dismissed or overlooked.
  • Symptoms can be tracked in an old-fashioned diary or notebook. A digital option to consider is 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, and etc. An advantage of a digital record is the helpful search function, if the treating team asks you to recall specific symptoms.
  • Using the whiteboard in the hospital rooms can be helpful for the nurses and staff looking after your child. It can also give a sense of purpose during long days in the room.

Discussions with the Treating Team

  • It can be overwhelming taking-in all the information given by the treating team. Some parents find it helps to record the audio of meetings on their phone or have a support person on speaker phone, especially when having bigger-picture discussions. This is a great option when your partner cannot attend the meetings. An audio recording can be helpful if you want to share the discussion with your wider support network, or you want to replay it again to understand certain things or to help take it all in. Make sure to gain consent before recording.
  • It can be helpful to write questions down for the treating team when you think of them. Keeping a list of queries helps to relieve some pressure on your memory which can be strained during times of stress.
  • During meetings, it can be easier to read out questions from a list, especially if it is a topic that is hard to bring up and hard to discuss.
  • Having a conversation with your nurse about your child’s usual routine can be very helpful to align expectations. While your child will probably be out of their general routine during hospital stays, flagging with the nurses when your child is next due for a nap may mean that certain nursing tasks can be brought forward or pushed off to allow your child to rest as much as possible. This can be especially true for babies and toddlers who usually have naps during the day, but the nurses may have clashing demands of taking obs hourly/2-hourly/4-hourly.

Download List of Induction Topics Here

Central lines (also known as CVL and Lumens). 

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 it is 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 however you should discuss these with your doctor to work out what will be better for you and your child.

Note: As the child gets bigger, the size of the line doesn’t change, so the line will look much smaller on a bigger child.

Important information about central lines and their care

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

Helping to make the lines a little more comfortable

There are many ways that you can make central lines more comfortable for your child, and it will depend on your child and their age.

Babies

  • To help the lines not rub their skin you can sew a little sock of material and fix it at the top of the lines with tape. When they are learning to roll, having tummy time etc this assists in preventing the plastic clips from catching or digging in to them.
  • Whatever you use, it will need to be easy to remove as you will need to get the dressing changed, and lines flushed each week.
  • To prevent little ones pulling the lines, it can be wise to put them in full piece jumpsuits, singlets or t-shirt suits that clip up at the bottom. This hides the lines when not in use and also allows you to feed them through between the legs when in use if that works for your child. If they can’t get to the lines they can’t pull them.
  • For small babies, ‘Love to Dream’ style swaddle suits are great for giving access to central lines or underarms without nurses having to wake the baby up. If you have one of the transition suits with arms that zip off, add press studs to the front and it’s very easy to use with a central line in place.
  • During treatment many people stick the lines to the back of tops so that they don’t get in the way, or so that they don’t become something to chew whilst chemo is being administered!
  • For younger babies, the use of a newborn insert or layback bath seat is helpful.
  • Some of the volunteers at the Children's Hospital in Randwick also make little socks that go around the lines to prevent them from getting tangled. Ask around and you may be able to find someone who does this.

Common issues with central lines

  • There are some common complaints with central lines, both after they are first inserted and subsequent accessing for cleaning and treatment. However, mostly they do not happen and it’s best to discuss these with your doctor or nurse.
  • The neck can be a bit stiff and sore after insertion –  immediately afterwards your child may appear to prefer looking in one direction over another.
  • Medicines can often feel cold when going through the lines.
  • The feeling can be unsettling when the lines are being flushed and used, but it is something that kids get used to quite quickly.
  • Changing the dressing can cause some anxiety for many children, but often babies have no reaction to it, other than they fact they dislike being held down. Dressing changes can occur while your child is sitting on your lap, facing out, being distracted. Good distractions can include what they like and are interested in, including: The Wiggles on a tablet or phone, a Child Life Therapist, your support person, or another adult.
  • There are many options with dressings, especially if your child is sensitive to any of them. Keep trying different options if one doesn’t suit. For very small babies the one-hand dressing seems to work well as it is a much smaller dressing.

Baths and central lines

It is important not to get the central line dressing wet and hence baths can be challenging.

Your choice will depend on your child and their age, but below are some ideas:

  • For younger babies, the use of a layback bath seat is excellent (see picture below for one example available from Babies Galore). Fill the water part way up so the baby can feel their feet in the water, but it stays away from the lines.
  • For a little added protection you can also tape up the lines onto their shoulder and place a folded up face washer on top of the dressing to prevent any splashes from wetting it.
  • Worried about central line cords and NGTs getting tangled when your child plays? Or when you want to give them a bath? Consider making (or buying) a bandage style top that keeps cords safely tucked away.

Hospital Packing

  • Keeping a reusable list of what you like to pack can help. This reusable list could be written towards the front of your child’s hospital notebook, so it can be found easily at the start of each admission. Or it can be in a notes app, and shared with your partner.
  • Items for your child when they are well enough to play, based on age and interests. These can include: a loved plush toy (plus a spare), LEGO, Duplo, crayons/pencils/markers for colouring in, blank art books for drawing, playdough, bubbles, finger/hand puppets, stickers and other toys.
    • We offer free activity packs designed to keep children entertained and engaged. You can apply for an activity pack here.
  • Pillowcases from home can make admissions nicer. Your own sheets, mattress topper and pillow can help, if you find hospital supplies not comfortable.
  • Extra-long phone/tablet/USB charger cords. Powerpoints are often in difficult-to-access positions!
  • Camping lantern/soft light. Helpful when your child is sleeping but you still want some lights on, without needing to turn on bright overhead lights.
  • Some comfort items can help, such as ear plugs, eye masks, sandals/scuffs, flip-flops (for shared showers), and a warm jumper, socks and slippers. Hospital rooms are notoriously cold!

Read next: Life Outside of Hospital

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Author: Karina May

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