Day of admission for the BMT

No matter how many times you have visited the ward and how much planning has been done, you and your child are going to feel anxious on the day of admission.

You will probably be bombarded with lots of do’s and don’ts from the hospital. Here are our tips that may make a difference.

Bring some basic provisions for you and your child on admission

The hospital will have its own set of rules for what foods can be stored on the ward and what can be eaten. It should provide you with an important list of do’s and don’ts. Stick to all the rules as there are valid reasons for them; the most important of which is to prevent infection.

When you first go into hospital it’s good to have a few small provisions with you so you can have a drink or make a cup of tea until you find your feet in your new surroundings. The golden rule is to buy individual packets but also remember there might be limited space for storage. Remember, no raw meat, fish or eggs are allowed on the ward.

Some suggested provisions you might consider taking in are:

• Individual sachets of tea, coffee and sugar (plus your own mug)

• Small cartons of UHT milk

• Milkshakes in sealed cartons

• Individual cartons of fruit juice or cans of soft drink

• Individually wrapped biscuits or cakes

• Fresh bread

• Tinned meat or fish

• Individual sachets of butter or margarine.

Toiletries and personal items

Opened bars of soap and face clothes are not normally permitted. Any toiletries, including shower gel and soap, should be new. Avoid strongly perfumed products, e.g. Sanex. This is because during chemotherapy your child’s sense of smell may be heightened and such products could add to any feelings of nausea they might have. In addition, your child’s skin will be very sensitive following chemotherapy.

Our tips:

• Buy disposable face wipes: they can be really handy.

• Buy a new body puff or scrub for showering.

• Shower gel tends to be more convenient than soap.

• Take in your hairdryer, because you will have to wash your hair daily.

• Toothbrushes are provided but take in your preferred toothpaste and a cocoa butter lip salve.

• Invest in a good hand cream, because you will be washing your hands all the time. Your hands can get really sore, and broken skin can be an entry for infection.

• As hand washing is so important in preventing the spread of infection, you will have to take off rings, bracelets and watches to wash your hands. It might be easier if you left these at home so as to avoid worry about them being lost or stolen.

• Men can start to grow a beard instead of having to shave daily using disposable shavers.

• For young children and babies, the hospital may let you bring in your child’s usual feeding cup, bottle, teat, feeding spoons and bowls, but all equipment will need to be sterilised at the hospital.

‘You will realise you need to wash your hands many times day and night, which makes them dry and sore. Use Diprobase cream after hand washing to help prevent them becoming sore.’

During your stay in hospital

Look after yourself as a carer We think it is really important that you look after yourself, so that you stay in good health to care for your child or relative. If you become ill, you will not be allowed on the ward because you will be an infection risk to others. Remember anyone with signs of illness (e.g. a sore throat, cough, cold, runny nose, high temperature, diarrhoea, vomiting, an eye infection or a cold sore) will not be allowed on the BMT unit or to come into contact with your child.

Our tips:

• A good night’s sleep is essential. Some of us found earplugs helpful in reducing the background noises of the hospital, especially if we were sleeping in the same room as our child. The noise from alarms on equipment and nurses popping in and out of the room during the night can be disturbing.

‘The carer’s bed in hospital was hard. A blow-up camping mattress as a topper can help, and these can be easily wiped down. Camping shops have lots of choice.’

• Make sure you eat regularly and healthily, and drink plenty of fluids. You can tire of the hospital canteen pretty quickly, so microwaveable meals are essential. Ask where the nearest shops are.

‘Make sure you have a good breakfast – sometimes it may be the only meal you will get until much later in the day.’

‘Try to eat little and often. Never make yourself go hungry. A lot of physical caring can easily make you hungry during the day. The busy days will make you easily forget to eat proper meals.’

• Don’t get institutionalised. Make sure you leave the isolation room and hospital for at least a couple of hours each day. Make sure the person you are caring for understands the need for this. They may also want you to take a break to give them some time alone, as living together in isolation 24/7 can sometimes be difficult. Going for a walk or just doing something different can help. A good time to leave the hospital for a break is when the play specialist, teacher or volunteer visitor comes.

‘Some time alone is essential. A walk in the park is good – fresh air.’

‘Make sure you force yourself to leave and have a break.’

‘Take time out on your own; even a 10-minute breather is good to get your head straight.’

‘Remaining upbeat is easily said but is really needed. If possible, try and get a night away with friends. You really will be recharged and ready for the next round!’

‘I bought a walkie-talkie to use during Jonathan’s BMT. When I had my meals in the sitting room, I used it to keep in contact with him. It gave me peace of mind and also made Jonathan feel that I was always nearby. You can even pass the walkie-talkie to the nurse if you need to go out of the hospital.’

Coping with daily practical tasks

As well as just ‘being there’ caring and giving emotional support to your child, in our experience there are lots of practical responsibilities as well. These can drain you physically as well as mentally. The upside of this, though, is that these practical tasks keep you occupied and structure your day. Here are some of the things we had to do:

• Strip the bed daily and remake it with clean sheets and blankets provided by the hospital, and again if the bed became wet or dirty.

• Every day change the towels provided by the hospital.

• Keep the isolation room clean and tidy.

• Make sure clean clothes were available every day. You, as carer, and your child need to change your clothes in the morning and at night. You will be responsible for washing and drying the clothes used.

• Shower and wash our hair every day (remember to take a hairdryer in). • Bathe our child (no flannels or sponges can be used and the hospital will provide disposable wash cloths) and cover them in moisturising cream, provided by the hospital, every day. This is to help keep the skin soft and supple, and to prevent drying so it’s less prone to crack and be a site of infection.

• Shop and cater for ourselves.

‘Prepare to be exhausted.’

‘The time flew by. There’s lots to do, so time passes quickly.’

‘I made a daily schedule to check what I had to do and what I had done every day, i.e. mouth washing, dusting, bathing.’

‘Going to the laundry will be a big and endless job during BMT. I normally went at midnight, which is the off-peak time. It can be annoying if you go to the laundry during the day and have to wait or keep checking the availability of washing machines.’

‘I asked our friends to help keep us topped up with what we needed: toiletries, clothes, fresh fruit, snacks, energy drinks and packed meals. This was especially important during the critical period. It let us concentrate on the caring and saved more time for rest.’

Our tips:

• Ask a friend or relative to take a few things home with them to wash. This will reduce the burden on you.

• Be mindful of how much personal ‘stuff’ you take into hospital. The room is small so it gets easily cluttered. De-clutter from time to time and get others to take things home for you.

• Enjoy the company of other parents when you are doing some of the housekeeping. The kitchen and hospital launderette can be good places to make friends.

‘A community builds up in hospital as everyone in the ward is in the same boat. They become a sort of new family. You celebrate the happy moments together. A very supportive group built up for us all and has resulted in lasting friendships.’

• Sticking to a routine helps structure the day and keeps things as normal as possible. For example, stick to the routine of pyjamas at night and getting up and dressed in clean day clothes every day.

• Make the most of the quality time you get to spend with your child.

• Make fun out of what you have to hand, e.g. blow up gloves, decorate the bathroom door, make hats.

Coping and being strong – the ups and downs of BMT

Our experience is that going through BMT is far from easy for your child or you. Many things are uncertain – how ill your child will be from the chemotherapy, whether the transplant will work, and whether there will be complications. There will be some days when your child will not want to communicate with you or anyone else because they feel so poorly. As a carer, this will all be on your shoulders, and it will take its toll.

Our tips:

• Just look after yourself and your child. Trust the nurses and the BMT team, and let them get on with their work.

• Take things one day at a time. Don’t plan too far ahead.

‘It would be difficult to cope with the immensity of it all if you were timing and chasing care all the time. I felt that I had to let go of the responsibility, and look to the next few days and not beyond. Otherwise you drive yourself mad.’

‘Have faith in the doctors and nurses, but address with them any concerns or questions you may have.’

• Build good relations with your care team. They will be a major source of support to you and your child.

• If your child is in pain, it’s worth talking to the pain team because sometimes they may provide help that the nurses may be unaware of.

• Remain 100% focused on your child and stay strong. Children are good at picking up your anxieties. ‘Stay as positive as possible.’

• Your child may inevitably feel pretty low some days. Get them to express their mood on the whiteboard in the room, so you and the nurses can tailor how you communicate with your child. Some days your child may be up for lively banter, and on others they may just want someone around but not necessarily to chat.

‘Noah used this to describe his mood – a smiley face, grumpy, etc. This helped everyone understand how he was feeling, and helped the nurses communicate with him.’

• Don’t set your expectations too high, especially concerning the timing of your return home.

• Keep a note pad to hand and write down questions you want to ask the consultant prior to the ward round. Once the ward round has finished you may not see the consultant again for another few days, and it’s frustrating if you forget to ask things.

• In our experience you may need help as you adjust to hospital life and separation from the rest of your family. Seek the help of the clinical psychologist, who should be available and visiting you from time to time. The clinical psychologist is there to offer you, your child and members of your family individual support and counselling while you consider BMT, then both during and after BMT.

• Remember you can ask for your child’s folder at any time. You can ask questions about the bloods, and staff will be reassuring.

‘You become an expert on bloods very quickly – you start to speak the same language.’

• Make the most of any alternative therapies that may be offered to help you de-stress, e.g. reflexology, back massage, Reiki healing. They are there for parents as well as the patient.

Special considerations if BMT is over Christmas or New Year

Some of our panel experienced BMT over the Christmas period. Hospitals put in a lot of effort to make Christmas extra special for children. Your child is likely to be well entertained and showered with presents.

Be aware that the bank holidays may affect access to your usual consultant, nurses, dietitian and psychologist. However, this should not affect your care.

Our tips:

• If the BMT is scheduled to take place over the Christmas period it is best to check exactly what cover is being provided, to set your mind at ease. Talk it over with your medical team.

• Over Christmas there will be no school, and this can be frustrating and boring for the child. This is when you need to ask the play specialists for help and use the volunteers who come in once a week to play with your child for an hour or so.

Practical care tips

This section lists some of the practical advice that we found helpful in caring for our children.

Our tips:

• Bring in some tubi-grip stretch bandage: the bandage that is used to support joints during sport. This is great for keeping the PEG and Hickman lines secure so they don’t dangle about. It’s important to ensure that the lines are cared for in a way that will not put your child at risk of infection.

• If your child is wearing nappies, make sure the ends of the Hickman line are not tucked into the nappy. The nurses will give you some elasticated material to make a vest, so that the ends of the line can be wrapped in soft gauze and tucked into the vest when it is not in use.

• Follow the doctors’ recommendations, especially concerning the precautions to take to help prevent and treat mucositis through oral hygiene. This involves three 30-second treatments that entail washing out the child’s mouth with a special sponge attached to a lollipop stick. It equates to 30 seconds of swabbing in the mouth with foam, followed by the use of mouthwash. Your child may not like it, but it’s really worthwhile persevering as it helps reduce mucositis.

‘It’s being “cruel to be kind” but it does help.’

• Tins of orange segments in juice (you will need to wash the can) and ice lollies are great for helping with mucositis.

• Your child’s bottom may become really sore due to the effects of the chemotherapy. We found the barrier cream Proshield a really good treatment to help relieve a sore bottom.

• For babies and young children, we recommend changing nappies every hour and use of a cream called Bepanthen (which can be bought from most supermarkets). This is because the chemotherapy results in faeces and urine that scald and cause severe peeling of the bottom. It is much worse than a nappy rash.

‘This may seem excessive but it reduces your child’s discomfort.’

• For babies and young children, some floor play is permitted, but you will have restricted space (a mat of 1 × 1.5m). Some days are ‘line’ heavy, so these may be most suited to play in the cot or bed. Make the most of days that are line-free. Don’t forget, keeping your child infection-free means you have to adhere to strict guidelines concerning sterility of toys. If toys fall outside the sterile area, then they can’t be used again until they’ve been re-sterilised.

‘Some days your child will be up for play, others they won’t.’

Feeding your child in hospital

In our experience the use of restricted diets during BMT varied between hospitals. Here are the different approaches that were followed.

Until your child starts full isolation (after chemotherapy) they will be able to eat food from the regular hospital trolley. But once chemotherapy begins, your child’s ability to fight infections will be reduced and they will be put on a BMT ‘clean’ diet. This is because many foods contain some small amounts of microorganisms, such as bacteria, that are usually harmless to a healthy immune system. The BMT diet restricts the use of some foods and sets guidelines for the preparation and cooking of other foods to reduce the number of microbes that your child encounters. Your child’s sense of taste will also change, so that may add to their problems with eating.

At University College Hospital, London, which treats older children, takeaways are allowed pre-BMT and there are no ‘clean’ diet requirements. However, a stricter diet has to be followed after chemotherapy and during recovery, when your child’s white blood cell levels, and hence their immunity, are low.

Our tips:

• Always respect and follow the rules and guidelines of the BMT centre treating your child concerning what foods your child can eat and when.

• Don’t worry unduly about the ‘clean’ diet. It’s really uncomplicated and easily manageable. Just read through the diet sheet that will list the foods allowed and foods to avoid. The foods allowed will form the basis of any snacks or meals you can prepare for your child. In general, tinned foods, such as fruit and puddings, meat (ham, corned beef, frankfurters) and fish (tuna, salmon), as well as canned vegetables, pasteurised milk and individual packets of food and drink, are good staples. Remember to remove any uneaten hot food or opened food within your child’s room after half an hour.

• If your child is a baby, you may be able to keep breastfeeding – discuss this with your BMT consultant.

• In our experience, at some point your child may go off their food and they may need to be fed by total parental nutrition (TPN), where liquid food is given intravenously.

When your child goes off their food

Encouraging your child to eat and drink is vital, so their bone marrow can grow, but there may be times when your child is just not well enough to eat or drink. In these situations the doctors and nurses will discuss with you the use of a nasogastric tube (NGT). This is a tube that goes up your child’s nose and into their stomach, and allows feeding support. We list below some of the advantages and disadvantages of NGT.

Advantages are:

• It helps keep your child’s appetite up and their stomach working for when they go home, and this aids recovery.

• All oral medicines can go down the NGT.

• It gives some freedom from an intravenous line; but an intravenous line may still be necessary if your child needs antibiotic treatment.

Disadvantages are:

• Sometimes your child will just resist and hate the idea of having a tube up their nose.

• If your child has severe vomiting or diarrhoea, the NGT feeds may need to be stopped.

If the NGT is not suitable or has to be taken out, this is when TPN will be started through the Hickman line. TPN provides all the nutrients your child needs, but you should still encourage them to eat and drink what they can manage. This will help keep their stomach working normally.

‘Thomas had TPN but we still tried to tempt him daily with his favourite food. He refused for ages and then one day he started to eat a small bit and then more each day.’

Consider having PEG

In our experience some parents, following consultation with their medical team, decided to pursue percutaneous endoscopic gastrostomy (PEG) for their child. This involves a small operation to put a semi-permanent tube straight into a child’s stomach.

Some advantages are:

• All oral medicines and feeds can go through the PEG.

• Your child might find they have a very sore mouth after chemotherapy, and this is when PEG is really useful.

• PEG can be useful post-transplant if your child still requires lots of medicine and overnight feeds.

A disadvantage is:

• Having a PEG involves a small operation to both put it in place and also to take it out when it is no longer needed, and as with all operations this carries some risks.

‘Sam had a PEG, which was fantastic, as all his medications could be given through it.’

Taking medication in hospital

Our tip:

• Sometimes crushing up tablets with a pestle and mortar and then mixing them up with fromage frais can help make them more palatable and easier to swallow.

Drinking

Your child will be expected to drink a lot to flush out the toxins from the chemotherapy, to stay well hydrated and to keep their organs working well. The amount of fluid taken in and the amount of fluid passed will be measured. Mineral water is not allowed. All water must be sterile or boiled, including water used to make up squash.

Our tips:

• Cartons of juice, cans of drink and the juice from canned fruit are good ways to boost fluid intake as boiled and sterile water isn’t very appetising.

• Ice lollies made with fruit juice and boiled water are good too.

• Boil up water in advance for the next day.

Other support for you and your child while in hospital

During BMT our children were provided with a range of support to pass the time and help them deal with any stress and anxiety they were having. Our experience was that the services below were hugely beneficial, and we would recommend that you take full advantage of them.

A play specialist – this is seen as an important diversion for your child when they are in hospital. It can give them an outlet for some of their feelings and emotions. The play specialist will want to know as much about your child as possible so they can tailor the play activities to suit. They will also work around you as to what time of day works best for you and your child.

‘The childcare specialists will bend over backwards to help, so ask for things that your child would like, as they probably have them in their stock cupboard!’

‘Arrange the best time for the play worker and teaching team to spend time with your child. Try to avoid the same time as the ward round, so the kids can enjoy a relaxing time with the teacher or play worker.’

Physiotherapy – we found that sometimes being in bed over a long period of time can reduce your child’s mobility and flexibility. This is nothing to be worried about and the hospital will have a physiotherapist and occupational therapist who will assess your child’s mobility prior to transplant and work to maintain it during the transplant period.

Hospital clowns – there to make you laugh and brighten up your day.

Music therapy – this is musical play. It also helps to de-stress your child and provides a non-verbal means of expression and communication.

Volunteers – the hospital may have trained volunteers who will come in and give you a break from your child’s bedside. Take advantage of their support to give yourself some ‘me’ time. They are also a fresh face for your child to see.

Social services – the hospital may have staff who can advise you on what benefits you may be entitled to during your hospital stay.

Schooling for your child in hospital

While in hospital your child will receive about an hour of schooling every day. The hospital school will operate during the same term times as regular schools though, so be prepared if the stay in hospital covers a school holiday period.

The teacher will visit you one day to arrange a daily time for your child’s schooling. Our experience was that the teachers were really good and very skilled at tailoring the schoolwork to the child’s level of wellness, and you will find that your child is well enough for this hour of school. The children tend to really look forward to the ‘class’, because it brings a fresh face and a mental break from being in hospital. The hospital teachers will try to speak to your child’s class teacher to tie in with what is being covered at their school, and the work is done on iPads.

Our tip:

• Actively seek the support of the play therapists during school holidays.

Waiting to come home

Our experience was that waiting to come home was hard; you do start to miss everyone enormously. We found that little setbacks can hold you back (e.g. blood counts not yet high enough and infections).

Our tips:

• Lower your expectations about the timescale involved.

• Be careful about mentioning going home to your child. As you can imagine, they can get really disappointed if it doesn’t happen.

‘It’s so important that you or the nurses don’t build up false hope of going home for your child.’

‘Don’t build up your hopes until you walk out the door.’

Preparing for the return home

The wonderful day will come when the doctors and nurses will tell you that it’s time to start planning for your return home. They will advise you on what actions to take at home, to reduce the risk of infection to your child.

Our tips:

• Always follow the advice given by the doctors for recovery at home. The restrictions they advise are to protect your child from infection.

• You have to make sure your house is clean, but you don’t have to go overboard and start shampooing the carpets and washing the walls. Just make sure the house is well dusted and vacuumed, and continue to dust and vacuum weekly once your child is home. Using furniture polish helps pick up small pieces of dust.

• Make sure uncarpeted floors are clean and curtains and bed linen are laundered, as these are common sources of infection in the home.

• You should postpone any building work in your home until your child is fully recovered. This is to reduce the risk of infection from the fungus called Aspergillus.

• Pets carry bacteria, viruses and fungi in their saliva, urine and faeces, so they can pose a health risk to your child during post-BMT recovery. If you have pets at home, then make sure your child’s hands are washed thoroughly after touching them and that your child is not involved in clearing up any mess. It is important that dogs and cats do not sleep with or on your child’s bed.

Discharge from hospital

‘There were tears of joy as we were going home, but also tears of sadness at leaving what had been our home for the past six weeks. We had become so close to all the nurses and doctors … they had become a huge part of our lives during this time, and part of something life changing too. It was all very emotional.’

‘Discharge day was very exciting … we arranged for transport home with a family member, and while we were waiting packed our cases and bags so we were ready.’

Our tips:

• The day before discharge day, prepare boiled water for your journey home.

• Get ready early on the day, because time runs away with you. You will need to clear:

– The fridge and cupboard you have used and leave them in a fit state so that other parents can use them when their child is admitted onto the ward

– Your child’s room. Keep a stock of spare carrier bags – they are useful for taking things to the car/taxi for your journey home.

• The nurses will give you a month’s supply of medicines that your child will need to take at home. Make sure you go through all the drugs with the nurses so that you are confident that you know the doses and when and how to give them.

‘It is worth taking some time to go over the chart of information you are given.’

‘We gave Sam his drugs as a run-through a couple of days before we left, so we knew what we were doing once home.’

‘Ensure that you feel confident to give medicine before discharge. I gave a lot of medicines, including intravenous medicines, to Jonathan. I always made sure I was competent to do any treatment at home and that I knew who to contact for help if needed.’

• Remember to take sick bowls, mints, boiled water and wipes in the car going home, as your child may feel sick during the journey.

• Make sure you have the contact details and telephone numbers of the BMT team; that is, the BMT clinical nurse specialists and registrar, and their 9 to 5 service during the week. Also make sure you have the details of who to contact out of hours, at weekends and in an emergency.