Planning ahead for the BMT

Once the decision is made and you have the date for your child’s BMT, you need to start planning ahead for admission to hospital. You can expect the stay in hospital to be six weeks minimum, but it may be a lot longer depending on how the BMT goes.

The time in hospital for the families involved in this project ranged from 44 days to 94 days, with an average stay of 10 weeks.

Get your child in good shape for the BMT

It’s important that your child is in good shape for the BMT. Often, people with CGD have low body fat and weight due to the effects of the underlying condition. During BMT your child may experience long periods of not wanting to eat or simply being unable to eat because of mucositis, a sore mouth or throat (caused by the chemotherapy), leading to further weight loss. This may potentially make the transplant and recovery period longer.

Our tips:

• Talk with the dietitian to review your child’s eating and drinking habits, and follow their advice. It is important that your child eats a healthy diet, including five portions of fruit and vegetables a day.

‘We were told to pile as much weight as possible on our baby Thomas before BMT, so we used high calorie milk with added cream and melted dairy cheese slices.’

• For older children, high calorie drinks such as milkshakes are good, and letting them have treats such as cakes, crisps and sweets can help them gain as much weight as possible pre-BMT.

• Get your child used to drinking a lot (water, milk, squash, juice), because once in hospital having their BMT, they will need their kidneys to be working well to help flush out the toxic drugs used for the chemotherapy. During transplant, your medical team will advise you as to how much your child should drink. Their recommendations will depend on your child’s body weight when they are transplanted. As a guide it is about 1.7 litres per day for an 8 year old and around 2 litres for a 12 year old.

‘I set a timer to go off hourly to encourage Jonathan to drink a cup of water (150ml). I felt it helped him establish a routine for drinking enough fluid during the BMT.’

• Don’t let your child become over tired in the run up to the BMT, and be cautious about keeping your child free from infections.

‘Sometimes this meant short breaks from school if Alex was tired, and keeping him away from other people with infections.’

Planning for taking time off work

It is likely that one of the main carers (usually mum or dad) will have to take time off work during the BMT.

Our tips:

• Talk to your employer at least three months before the BMT.

• Try to negotiate saving holiday for when your son or daughter has the transplant.

‘It’s important that your employer knows and understands about the BMT and how it will affect your work. They and fellow co-workers can be strong supporters during BMT.’

‘It can be helpful to negotiate with employers about carrying over holiday to save days lost.’

Think about your named carers

To limit the chances of infection during BMT, up to three people may be named as carers during BMT; e.g. mother, father and one other. It’s important to know you can’t chop and change carers during the procedure. Only these named people will be allowed in the isolation room with your child.

Our tip:

• Make sure the third carer or ‘supporter’ is really flexible with the time they can give, in case one of the main carers becomes ill. Their role is important as they are a fresh face and they bring in news from home.

Juggling family life

You may have other children or dependents at home who will also require support while you are away in hospital.

Our tips:

• Start thinking about who will look after them while you are away. Grandparents, other relatives and friends may be able to help out.

• Don’t forget that your other children may be just as anxious about what is happening as you are, so do keep them in the loop. They may also need the extra cuddle and reassurance.

• Try and spend some time together doing something fun as a family unit before the BMT.

Accommodation during the BMT

Usually the BMT isolation room is fitted out to allow one extra person to stay overnight as a carer.

Our tips:

• If you want another carer to stay overnight, enquire about the possibility of the hospital providing accommodation through the hospital’s accommodation officer. Some hospitals may have rooms or flats that you can use. The key thing is to investigate what’s available if you need it and to plan ahead.

• If the donor is a brother or sister, then it may be possible to accommodate them in the same ward as your child having the BMT. Otherwise it may be possible for them to stay in a patient hotel with a parent.

Plan for the extra costs associated with BMT

It’s important to remember that you will have to pay for your travel to and from the hospital, food for you and your child and any clothes you may need to buy. Our tip is to plan ahead by contacting the hospital social worker, who can provide you with information on financial resources, community agencies, disability benefits and hospital services.

We recommend visiting www.nhs.uk/Planners/Yourhealth/Pages/Travelcosts.aspx to see how the NHS can help out with travel costs.

In the UK the charity Anthony Nolan may also be able to provide up to £150 in financial support through its grant programme. Download the Anthony Nolan grants advice form to find out more, and email patientinfo@anthonynolan.org if you would like to apply for a grant.

You may also be able to get help from www.familyfund.org.uk.

The Sick Children’s Trust may be able to help provide ‘home from home’ accommodation for families with sick children in hospital. This needs to be referred by the hospital accommodation office. Visit www.sickchildrenstrust.org.

‘Don’t hesitate to get in touch with the social services at the hospital if you need help.’

Planning for hair loss after chemotherapy

The chemotherapy used in BMT can inevitably lead to hair loss. Some people deal with hair loss as it happens during BMT, but some parents and children recommend working towards BMT with successively shorter haircuts so that losing hair isn’t such a big thing when it happens.

‘Tom worked towards his BMT with successively shorter haircuts. The day before going in for his BMT he had a close shave so that hair loss was not a big deal. This was to maximise hygiene – it’s not good to have clumps of hair in the bed.’

‘Alex lost his hair. It was a bit traumatic and took ages to come out, about 2–3 weeks. It was like having pine needles everywhere. Eventually Alex decided we could shave it off and then he thought it was really cool.’

‘We shaved Thomas’s head as soon as his hair started coming out.’

‘Sam, being a boy, had short hair anyway, but he wanted to keep it until the very end. I bought a soft bristle brush, gently brushed his hair every day, and quietly disposed of the hair in the bin after. When his hair really started to come out, he wanted it cut very short. I left it to his dad to use the clippers on the ward and to shave it short. It’s so much better afterwards, and less itchy around their neck.’

‘We didn’t shave Jonathan’s hair until the last minute. Do whatever you think is good for your kid or easier for you, but do tell them and explain fully in advance. It will help them to understand why.’

Getting yourself in shape

As a carer, you are going to need to be in good health.

Our tips:

• If the transplant is scheduled to take place during the winter, consider having a flu jab to keep you well. You may be able to get this for free on the NHS because you and your child are in the ‘at risk group’. If this is not possible, you can get the jab privately, in supermarkets and pharmacies.

• Look after yourself by eating healthily.

• If the stress starts to get to you, be kind to yourself. Take some time just for you and treat yourself a little.

Get your head around what is going to happen

We recommend getting your mindset ready. Remember you won’t actually know how long the stay in hospital will be. It could be a short time, say, six weeks, or it could be longer owing to unforeseen events, such as an infection.

Our tips:

• Don’t plan too far ahead. Holidays may have to go ‘on hold’ for a while.

• Talk of things that the family can do once you are all home together again, but don’t put dates to them.

Work out a care rota for the time in hospital

Everyone’s situation is different. Sometimes the mother is the main carer, with the father becoming the carer at weekends, and the third carer providing company or cover. Other parents choose to alternate the care each day, and some stay with their child all the time.

Our tips:

• Discuss with your partner and third carer what will work best, but remember you need to build in some flexibility just in case one of you becomes ill.

• Remember there may be crucial times (e.g. the day of the transplant or if your child becomes seriously ill) when both parents will want to be close by. Try and plan for this contingency.

• Keep the carer’s rota to a maximum of 3–4 days and then a couple of days off, if possible. This will help to keep you grounded and to maintain relationships with family at home and your friends.

‘If both parents are present all the time it can take its toll on you, especially if you aren’t used to spending so much time together.’

• Some hospitals may allow siblings to visit once restrictions are lowered, but they will need to be well. We advise checking with your hospital about this.

Telling your child’s school or college

If your child attends school or college you will need to inform them about the plans for the BMT. You can expect your child to be out of mainstream education for at least six months.

Things you need to know:

The school is statutorily obliged to make every effort to stay in touch with your child during any prolonged absence or long-term illness. In the legislation, the school must endeavour to write/ email/Skype with your child wherever possible and send regular communications to help them feel connected. They should also attempt to inform the child/parent of the work that is being missed and provide materials where possible.

Your child will receive some tuition in hospital if they are 16 years or younger. This is usually for one hour a day and one-to-one tuition. The hospital should liaise with the school about this.

‘Don’t worry about your child catching up on schoolwork – they will.’

‘Tom was not entitled to any schooling during his BMT as he was 17 and past the compulsory education age. This was extremely frustrating as he was due to take his AS levels at the end of his transplant. I think had he had the choice of schooling in hospital and the continuity of his education, he might not have left school so quickly after finally going back seven months post-transplant. I do think this is why he could not settle back in college and ended up leaving after three months.’

Our tips:

• Call the school or college to let them know. Each school will probably be different and will tell you what they require in terms of paperwork, such as a letter from your consultant to explain the absence period.

• It is definitely worth speaking to the headteacher as well ahead of time. Remind them nicely of their statutory duties to your child and ask them what strategies they will put in place for continuing contact and educational support for your child while they are away.

• Ask the teachers to send a folder of the schoolwork that will be missed so that you and the hospital teacher know what needs covering.

‘Don’t necessarily rely on school to stay in touch and take the initiative. Take control yourself.’

• Ask the form tutor to send pictures and letters from your child’s class to the hospital. This can really cheer your child up, and pictures can be pinned up in your child’s hospital room.

• Find and contact your local education authority inclusion department to let them know. This is a good back up if the school does not respond to your child’s needs.

• If your child is older than 16 years of age, then consider planning, if you can afford, for private tuition in hospital.

Plan for communicating with the outside world during the stay in hospital

In our experience, staying in contact with friends and family during the BMT is vital to keep your spirits up and to maintain relationships.

Our tips:

• Having a mobile phone is essential. Consider upgrading your contract so that it includes a larger bundle of free minutes, because you will be using your phone a lot. A mobile phone is also useful for sending emails and taking photos to share with others.

• Make sure your phone has stored all the key numbers you need, e.g. your child’s school, doctors and nurses.

• Take a laptop or iPad into hospital. Ask the hospital how good (or bad) the internet connection is and how you access it.

• Plan ahead and set up a Skype account. Ask others to do the same, so you can see and talk to others online.

• You might consider doing a video diary or blog, so plan for that.

• Letters and post from school, friends and family can be a highlight of the day once your child is in hospital. Emphasise to others, in the lead up to the BMT, how much you would value them sending a letter. If they do send a letter, then ask them to double envelope it. This is because the outer envelope has to be removed before the letter is allowed in the isolation room.

‘A smartphone! I could email pictures and maintain contact with the outside world.’

‘Think about having a mobile dongle if using lots of data. We set up Face Time with families and watched TV programmes and films online.’

‘Keep up communication with other family members, such as grandparents. They will be very anxious, especially if they’re far away from you. Keep updating everyone on your child’s progress.’

Clothes, shoes and lots of pyjamas

You will need to plan what clothes you are going to take into hospital for you and your child. Nappies are usually provided by the hospital for babies and young children.

We recommend asking what the temperature is likely to be on the ward during your stay. In our experience wards are usually fairly warm, regardless of the time of year, so think about this when planning what to pack for you and your child.

Our tips:

• For your child, pack lots of loose, cool, lightweight, easy to wash, comfortable clothes that are easy to put on and take off. In particular, select garments that are loose around the chest area, so they don’t press on any central line used for BMT. Think about buying at least one size too big.

• Think about buying these well in advance of the transplant date, especially if the transplant is scheduled for the autumn or winter, when it is difficult to source lightweight cotton items.

• If you need to buy new clothes, then buy the cheapest. They are going to be washed at 60°C to kill any germs, so buy inexpensive things and allow for shrinkage.

• Overall, layering items of clothing is a good idea. If the temperature changes, you can add or take off layers.

• Children are likely to have acute diarrhoea and vomiting as side effects of the chemotherapy, so take in lots of pyjamas, particularly pyjama bottoms.

Our recommendations for clothing are:

• At least eight sets of lightweight cotton pyjamas

• Five sets of socks and underwear

• Three pairs of tracksuit bottoms or shorts

• Three loose T-shirts

• Slippers or flip-flops for wearing on the ward. (These will also need to be washed at 60°C.)

‘Don’t plan on taking too many clothes into hospital for yourself – a week’s worth is enough at a time.’

‘Take enough clothes so that you can wear a completely different set each day.’

‘I bought clothes one size too big for Tom, so they were quite loose and comfy. But remember, your child will lose weight, so a variety of sizes is a good idea.’

‘We bought a size 18 months too big for Thomas, who was 11 months old when he had his transplant, as we knew the clothes would shrink on washing. I’d recommend having lots of pairs of pyjamas on hand. The child may vomit and have diarrhoea for two or three weeks.’

‘We used only vests and shorts for Jonathan during his BMT. Choose clothes that are as comfortable and as loose as possible, so it’s easy when medical things need to happen.’

Planning for your child’s room and entertainment

In our experience it’s good to make the isolation room as much like home as possible, within reason, and to think about how you will pass the time in hospital. Presents are allowed but the hospital will have a list of what is allowed on the ward and in the isolation room. For example, comics will have to be in sealed packets, and no old books are allowed. The hospital may have a large supply of DVDs and games, in which case you won’t have to take in lots of things.

‘We filled our computer’s hard drive with Jonathan’s favourite cartoons and films.’

Here are some additional things we think might help:

• Displaying posters and photographs of family and friends can make you and your child feel more at ease. Make sure they are laminated or in a plastic cover, so they can be wiped down.

• Some hospitals may allow you to bring in your child’s own duvet cover as long as it is washed at 60°C. It will have to be changed every few days. Ask the staff about the rules that apply in the hospital where your child will be receiving treatment.

• For young children, you can arrange to bring in a small supply of their favourite toys. These too will have to be washed at 60°C.

• Plan to take in a PlayStation or other games console.

• Consider taking in your own portable television.

• For parents, buy a good, new book (although you may not have time to read it).

Our tips:

• All toys, games and books need to be new or nearly new. Plastic toys, such as construction bricks, can be washed in hot soapy water and need to be dried thoroughly. Unvarnished wooden toys are not allowed because they carry a high risk of transferring infection.

• You can’t take newspapers into the isolation room but you can read them in the parents’ room.

• DVDs and CDs can be brought into hospital but they will need to be wiped down.

• Remember, the more things there are in the isolation room, the more the dust will gather. Plan to change things around after a couple of weeks, bringing in different items to keep everything fresh.

• Don’t forget to clean all items that have a hard surface with an alcoholbased wipe before taking them into the isolation room. This includes games consoles, a television, bottles, cans and plastic toys.