Being at home – hurray!

‘Coming home is just brilliant. Well adults can come and visit you. You can go out for a walk but you can’t interact with other children for six months. It’s the chance to live a normal life.’

‘Although we were very happy to be home, we looked forward to our twice weekly visits to the transplant clinic. It did take some readjusting to get used to being home, as it seemed very quiet. In hospital there was always somebody in and out of the room, whether it was a nurse or a play specialist.’

Coping at home and support

Coming home and managing the caring yourself can be daunting. It can also be stressful and tiring, because lots of care and nursing is still needed. We found that we had to give a range of medication to our children at home, including:

• Ciclosporin – to help control graft versus host disease (GvHD)

• Septrin – to prevent a lung infection called pneumocystis

• Aciclovir – to reduce the risk of viral infection

• Itraconazole and Voriconazole – to reduce the risk of fungal infection

• Penicillin – to reduce the risk of pneumococcal infection

• Sulfasalazine – used to treat inflammatory bowel disease

• Lansoprazole – used to reduce the acid made by the stomach, so allowing the stomach lining to heal better after BMT

• Prednisone – to help control GvHD

• Mycophenolate mofetil (MMF) – to help control GvHD

• Immunoglobulin therapy – given intravenously, to provide extra protection against infection.

Our tips:

• Make a decision about how much of the care you want to take on at home. For example, you may not feel confident about giving your child intravenous medicine. It’s important that you take on what you are comfortable with and carefully balance being a parent and being a nurse for your child.

‘It all felt very daunting … once home we were on our own! In hospital we felt safe as we had the reassurance of the nurses and doctors.’

• You can expect to receive support at home by community nursing teams for blood tests and dressing changes. This support will be organised by your BMT team and local hospital. If it doesn’t happen, chase it up with your BMT team.

• Sometimes intravenous medication can be given at your local hospital. Talk to your BMT team to see if they can arrange this for you.

‘I had Healthcare at Home (HCH), who were fantastic for intravenous infusions. This was coordinated through Great Ormond Street Hospital, initially with my local hospital, then I liaised with HCH direct.’

‘Home care teams will support you if you want them to with intravenous infusions and line care.’

• Don’t get overwhelmed. You are not on your own – your community team and BMT team are there to support you. They are at the end of the phone should you need them. You should feel comfortable about contacting them whenever you have any issues or worries.

• Your BMT team should give you a month’s supply of medication to be taken at home but after that you will be responsible for maintaining the stocks you need.

• Before your monthly supply runs out it’s vital you check in advance with your doctor’s surgery its protocol for reordering drugs on repeat prescriptions. Our experience is that sometimes GPs may query the cost of an expensive drug such as Voriconazole and won’t prescribe it on repeat prescription. In this case, it may be possible to get it through your BMT centre.

‘The main point is to check all drugs are available from your GP, as my BMT centre said some GPs won’t prescribe Voriconazole, and in that case we had to get it through them.’

‘It is good to organise all medication in advance through the doctors so you have the stock when needed.’

• Check with your surgery ahead of time how long it will take to get the prescriptions through the processes needed, as sometimes it can take four days from putting through your prescription to collecting your drugs, especially if they are unusual ones. • Ask for your prescriptions from the BMT team to go direct to a chemist rather than through your doctor. This saves time because when you are in town you can easily collect the medicines.

• Consider using pharmacy delivery services. Lloyds Pharmacy and Boots will deliver NHS prescriptions straight to your door for free.

‘I posted my prescription to my doctors, and asked them to forward it to Boots, the chemist, where I either collected the drugs or they delivered them. After 11 years of caring for my son, I found this method worked best for me.’

• You still need support, so ask for help from friends and family. Our experience is that they are more than happy to help. Just simple things, such as collecting your meds, doing your ironing and collecting your other child from school, can make a difference.

‘Delegate out big time, you need extra time with your child.’

‘I couldn’t cope with even part-time work when my child came home.’

Recovery at home

The doctors will tell you that the first six months of recovery after BMT are the most critical, and they will give you some key do’s and don’ts.

Our tips:

• The diet for your child is likely to be significantly relaxed when you get home, but make sure you ask the dietitian what they recommend and ask if your child would benefit from having high-energy supplement drinks.

• Wash your child’s bed linen, towels and pyjamas at least weekly. They can be washed with other family laundry. Your BMT team will advise you as to any special precautions you may have to take for drying the clothes. Our experience is that some parents were told they could dry the washing outside, while others were told to tumble dry washing, as fungal spores could blow onto it. Check with your team!

• Similarly, your child’s dishes and eating utensils can be washed in hot water with everyone else’s.

• Make sure your child does not touch or handle any pets. If they do, then make sure they wash their hands thoroughly after contact.

• It’s really important to reinforce the need for hand washing after using the toilet and before eating.

• The great news is that you don’t have to stay indoors all the time: it’s just advised to stay away from crowded places, such as restaurants, shops, cinemas and parties, and to avoid crowded public transport. Going for walks in the local park and getting some fresh air, rather than going to town, is a good idea.

• Family and friends can visit, but not too many at once and not if they are ill. Remember, children at school have a greater chance of carrying infections because of their school environment.

‘We were told to “screen” any school friends that came to visit. We had to look out for chicken pox, measles and the cold sore virus, herpes simplex. We were told to report any exposure to these to the doctor or BMT nurse immediately. Everyone, family and friends, understood when we told them they might pose a risk to recovery.’

‘I always asked any visitors to wash their hands, to avoid any awkward situations. This helped get people to understand any precautions we needed to take to avoid the spread of infections.’

• You need to practise good hygiene and bath or shower your child every day. We recommend using a non-irritating mild soap or shampoo. Alpha Keri oil can be used in the water and Diprobase or E45 cream on dry skin.

• Good dental hygiene is also really important, so make sure teeth are brushed at least twice a day, using a soft toothbrush and toothpaste. Change the brush every three months. We were told to make sure the areas where the gums meet the upper and lower cheek are really brushed thoroughly.

• If your child needs urgent dental work, this should be reported to your BMT team. They will help advise you on the way forward.

• If your child has had GvHD then you have to take special precautions and protect your child’s skin from the sun. These include:

– Covering the skin with clothing as much as possible

– Ensuring they wear a hat, especially until their hair grows back

– Plastering them in sunscreen. Doctors told us to use total sun block for the first year after BMT.

• It’s a good idea to build up your child’s muscles, because your child will have lost some muscle tone after their stay in hospital. Introduce some gradual exercise, such as walking. Our experience is that your child will tire easily and may complain of muscle aches and pains, but this will reduce over time.

• Further on in the recovery period, ask your doctor about when you can relax or stop the various precautions they have advised you take at home. Your doctor is the best person to advise you, as they know how your child is recovering.

‘It can seem like a long road to recovery, but with small steps things move along quite quickly.’

Dealing with the unexpected once home

Our experience is that during the recovery period you should expect some ‘hiccups’ in your child’s recovery, and you may find that your child requires some further short stays in hospital. Some common problems that we had to deal with were infection of the central line (sometimes referred to as a Hickman line) that required intravenous antibiotics, shingles and sometimes GvHD that needed specialised drugs such as Ciclosporin.

Our tips:

• Watch out for signs or symptoms of infection and report them as soon as possible to your BMT nurse or doctor. These include:

– A temperature that is greater than 38°C. It’s a good idea to have a thermometer at home and know how to use it. If your child has a high temperature you should speak to your doctor. Don’t be tempted to give them Calpol until you have spoken with a doctor. This is because Calpol can mask a fever

– Any breathing problems, such as a runny nose, cough, sore throat or cold

– Stomach problems, such as diarrhoea, nausea, vomiting or cramps

– White patches (thrush) or sores in the mouth.

• Look out for signs of GvHD and report them as soon as possible to your BMT nurse or doctor. Things to watch out for are:

– Any new rash over the body, palms of the hands or soles of the feet. The rash may or may not be itchy

– Yellowing (jaundice) in the white of the eyes or skin

– Watery diarrhoea

– Loss of appetite with weight loss.

• Also common post-BMT is shingles. This is caused by the reactivation of the chicken pox virus, herpes zoster. Our experience was that shingles can develop quite slowly, starting with a sore back, and then a rash that develops into raised pimple blisters. Our advice is to contact your local GP or local hospital. They will give you the appropriate anti-viral drugs (the Aciclovir family of drugs) to treat the shingles.

‘The nurse told me I could use a cold sore treatment cream on the spots to treat Sam’s shingles. He found it soothing and it calmed things down.’

‘Applying calamine on the spots can also be soothing for shingles.’

• Don’t panic or be too alarmed if your child needs to be re-admitted to hospital. We found that often treatments can be dealt with by the local hospital. In our experience the hospital involved with your child’s BMT will maintain links and give advice to your local hospital.

‘Remember though, the “curve-ball” can come at any time and you may need to go back into hospital if there is a line infection, or some other problem, that can’t be treated at home.’

‘Alex has had four hospital stays of three or four days each post-BMT. He had a fever that might have been because of a line infection, and some reaction to medicines post-transplant. He is now doing really well and is back at school.’

‘Set up a good relationship with the local hospital. Always remember the name and try to talk to the exact doctor or nurse who knows your kid very well.’

‘If your child is to have intravenous treatment at the local hospital, recognise that different hospitals follow similar but different procedures.’

‘React quickly, especially if there is a line infection. Sometimes it can be crucial. Call the local hospital before arriving, so they can plan a room.’

‘Remember, after the BMT you will be full of knowledge about how to care for your kids, and this knowledge may be better than that of most of the local nurses or doctors. Be prepared to challenge them if you think your kids are not treated properly, especially post-BMT if a line infection occurs.’

Outpatient clinics post-BMT

The doctors will want to carefully monitor your child’s progress post-BMT so, initially after discharge, you will need to return to the hospital every week for check-ups. The frequency of these visits will decrease over time as your child recovers and moves on from the transplant.

Our tips:

• Plan for these clinic visits, because travelling on crowded public transport is not recommended. You could ask your friends and family if they could give you a lift, or sometimes the hospital might be able to offer help with transport.

‘Outpatient visits – we are helped incredibly because the hospital arranges transport. I don’t have to worry about it. I drive but worry about parking, and without hospital transport I would have to try to line people up. We are collected 2–3 hours before an appointment.’

• Use the time with the doctors to cover any questions or concerns you may have. Keep a list of questions at home and ask them at the clinic.

Schooling at home

Your child is entitled to home schooling while they recover from BMT until the point when your consultant says it is OK for your child to return to regular school. The hospital school will speak to you when you are approaching discharge, and they will connect with your local school and home education service. You will be allocated a suitable teacher, who should be skilled in children who cannot go to school, and they will come to your home. In our experience this took some time to set up but worked well once arranged. Your child can expect to receive a statutory minimum of five hours’ schooling a week and they will be given homework. The home tutor will keep the lines of communication with the school open.

Our tips:

• If you don’t hear from your home education service, then chase them.

• There may be some subjects that your local education authority won’t cover (e.g. French). For these subjects you could consider paying for a private tutor. Costs are around £30/hour at GCSE level.

• Stay in contact with the school or college and keep them informed of your child’s progress. You can do this by telephoning the headteacher/ principal every two weeks.

‘The one-to-one tuition provided at home is very good and we found that our son covered as much work in five hours of one-to-one as he would have in a whole school week in a class of 30! He continued to progress and is not at all behind with his schooling.’

Returning to school or college

The wonderful day has come when your child’s immune system is robust enough to allow them to return to school or college. However, it can be a daunting experience for your child.

Our tips:

• Don’t expect them to attend full time immediately. Consider doing just mornings perhaps every other day, then, just mornings. Introduce them to full school days gradually, because they can become extremely tired.

• They may feel a bit displaced and emotional, so it’s worth seeing if the school/college can provide some extra help during lessons for a few weeks and some emotional support.

• It might be a good idea to get in touch with the psychological support services at the hospital to see what they advise for your child returning to school and whether they can help to brief the teachers and the wider school on what to expect.

‘It is a huge thing for your child to return to school after so much time off and try to fit back in. Seek support! We didn’t think to and it proved to be a rocky ride for a couple of months.’

Vaccinations after BMT

About a year after the BMT, your doctor will check if your child has immunity to common diseases. Our experience is that the doctors will recommend your child be revaccinated against conditions such as measles and tetanus.

Your child and life without CGD

It can take up to two years for your child’s immune system to be fully functioning, but don’t be surprised if once the BMT is over your child starts to feel well and wants to spread their wings. This is absolutely normal after living with CGD and the restrictions it has placed on what they can and can’t do. For parents, it’s our experience that it’s quite difficult to let go of the old concerns and anxieties that have been a major part of your life, sometimes for so long. Some parents refer to it as a new reset position and find it hard to adjust.

Our tips:

• Give your child space and time to readjust. It’s likely they will not want to be fussed over in the same way as before.

• Ask your child to tell you when they think you are being too protective about their health and what activities they now want to do. Address it together and work out a pact on how to deal with these situations that works for you all.

• Ground yourself in the new reality and share with them the new things your child can do without you worrying.

‘Tom learned to drive and passed his test second time. It gave him so much independence: something that he hadn’t had.’

‘Once cured and the lines were out and the wounds were healed, my child went on to do lots of things they could not do before, such as cleaning out the pets’ cages, joining eco clubs using compost and mulch, going to play on playgrounds where mulch is on the ground, going on biology field trips and visiting old places where there is a lot of dust.’

• Consider having some psychological support to help you deal with any lingering anxieties or behaviour that has become engrained.

We wish you well and every success for you and your child and your journey through BMT.

Acknowledgements

We are grateful to the XLP-Research Trust, who inspired us to develop this booklet; to the Children’s BMT Unit, Great North Children’s Hospital, Newcastle, who shared their pre-admission information with us; and to all the parents who helped us compile this information.

This booklet was developed through interviews with parents, conducted by Dr Susan Walsh, CGD Society.

Contributors

Claire Bonner, mother of Max, who had a BMT on 29 June 2012.

Gill Gregory, mother of Joe, who had a BMT on 11 February 2010.

Louise Hannard, mother of Alex, who had a BMT on 22 November 2011.

Ning He, father of Jonathan, who had a BMT in January 2013.

Jackie Irvine, mother of Tom, who had a BMT on 15 April 2011.

Kevin McGuiness, father of Thomas, who had a BMT in April 2012.

Caroline Somers, mother of Noah, who had a BMT on 27 January 2012.

Angela Stockwell, mother of Sam, who had a BMT on 16 December 2011.