If your child is having CAR T-cell therapy

If your child is having CAR T-cell therapy, you may need to travel away from home to a specialist children’s cancer centre for treatment.

This can mean being away from home for some time. You might have questions about: what to pack, where to stay, and what to ask the hospital team. Check out our section on questions for the hospital team to ensure you’re fully prepared for the stay.

All hospitals accommodate one parent or carer to stay with their child at all times. Most hospitals provide a bed or recliner for overnight stays, allowing at least one parent to remain close.

Depending on availability, some hospitals may accommodate more than one parent. In case this is not possible, charities like Ronald McDonald and Young Lives vs Cancer provide free accommodation for a second carer or siblings close to the hospital.

Leukaemia Care has a CAR-T Away from Home Service that provides financial grants and accommodation to support families. Your hospital team can also help you find affordable accommodation options nearby.

Your child may stay in the hospital for 2-4 weeks after their CAR-T infusion before returning home.

Space can be limited on the wards, so think carefully about what you need. Asking your child to pick out their favourite toy, game, or book, might help involve them in the process.

Many CAR-T wards follow strict infection control policies, so it is important to speak with your team before bringing anything to the hospital.

Here's a list of items to pack for the hospital stay:

For you:

• Basic toiletries like a toothbrush, toothpaste, and other wash things
• Comfortable clothes
• Individual snacks and tea to keep you energised
• Noise-cancelling headphones to block out hospital noises
• A device with programs downloaded (in case the WiFi connection is not good)
• A yoga mat and resistance bands to do some stretches and exercises.

For your child:

• Basic toiletries like a toothbrush, toothpaste, and other wash things
• Comfortable clothes
• A list of your child’s medications
• Any special equipment your child uses
• Your child’s favourite toys or comforter. Consider bringing two in case one needs a wash.
• Any bottles, teats or drinking cups your child prefers
• Nappies, if needed, although most hospitals provide these.

You might have many questions for your child's hospital team. Here are some suggestions of things it can be helpful to ask:

Most hospitals provide accommodation to one parent. If the hospital cannot host a second parent, your hospital team help you find affordable lodging or point you in the direction of charities that can help. See our section on staying with your child further up this page.

Some hospitals have very strict infection control policies. Ask your hospital team about these so you know what to expect. Pack with these infection control policies in mind.

Food will be provided for your child while they are in hospital. You will most likely have access to a kitchen with a microwave and kettle where you can make tea or prepare snacks. There may also be a fridge for you to store food. Most hospitals also have a canteen where you can get food.

If you are worried about the cost of your food while at the hospital, ask your hospital team about support. Meal vouchers may be available.

Some hospital units follow strict transplant guidelines and may require frequent washing of your child's clothes and any bedding you've brought in from home.

Some hospitals will wash your child’s laundry. But in other places, you may have to take laundry home to wash, or arrange to have the laundry washed if you don't live close to the hospital.

Ask the hospital what facilities they offer. If your hospital does not offer laundry services, there may be a laundromat you can use nearby (fees may apply).

The hospital will have members of staff to support your child through treatment. This may include visits to the hospital gym with physiotherapy, hospital school lessons, music therapy, and others.

Visiting hours and rules vary between hospitals and wards. Check with your hospital team to confirm times and guidelines that apply to you and your family.

Your child’s hospital will have emotional support for parents. Support may also sometimes be available for siblings.

Speak to your hospital team. They can connect you with other families, community networks, and psychological support.

Treatment-related costs like travelling to your child’s hospital multiple times a month can quickly add up. Support options such as travel expense reimbursements, free parking, and concessions on congestion zones are available. Ask your hospital team for guidance.

Some charities offer grants to help with the extra costs of your child having treatment.

Going through cancer treatment can be hard for children, both physically and emotionally. Psychological support can help them process tough feelings like fear, sadness, or treatment-related anxiety.

Siblings of children with cancer can also benefit from psychological support. They might struggle with a mix of emotions. This could range from feeling worried about their sibling to feeling guilty or jealous of the attention that their sibling is receiving.

Whether you’re looking for psychological support for your child living with cancer or their sibling, below is a list of resources that might help.

Charities and support groups can provide valuable support, in addition to your GP, hospital team, friends and family.

Connecting with other families navigating the world of childhood cancer can be a source of comfort and understanding. Many cancer charities (including those mentioned on this page) have community networks you can join. Some of them organise online or in-person meetings.

Leukaemia Care has a buddy support service to connect parents with other families who have had similar experiences. Your child’s hospital may also have a support group. Ask your hospital team about these.

Facebook has many groups dedicated to parents of children with cancer. These, too, are a supportive online space for sharing experiences, learnings, and advice.

If you are struggling with another particular issue, speak to your hospital team. They may be able to provide support or signpost you to someone that can.

You may find the Children with Cancer UK’s help and support for childhood cancer page helpful.

Charities like the Opie Jones Foundation provide mental health therapy grants for parents and carers affected by childhood cancer. We provide more information about people and resources that can help on our Caring for Someone having CAR T-cell therapy webpage.

The journey to CAR T-cell therapy can feel long, challenging, and upsetting. Starting treatment can bring up many emotions for everyone in your family.

Treatment can change family life. The practicalities of treatment often require families to adapt in ways that affect everyone, particularly siblings. This is especially true if you spend time away from home during treatment.

It is important to acknowledge these challenges and reach out for support when needed. You don’t have to face this alone. There are resources and people who can help you navigate this time.

Here are some ways you can support and reassure siblings:

Siblings may have questions about CAR T-cell therapy or cancer or might worry about things they do not understand. The Children’s Cancer and Leukaemia Group have an animation and booklet aimed at siblings of a child with cancer that might be helpful.

Encourage children to ask questions and talk openly about how they are feeling. Remind them that it is okay to feel sad, worried, or upset. A counsellor can help them work through some of the emotions they may be feeling. The Little C Club have flashcards that might help with this.

With so much focus on the child receiving treatment, siblings can sometimes feel left out. Take time to show them that they are just as important.

If you can, try to have some one-on-one time with siblings. It doesn’t have to be for the whole day: a short walk, a trip to the park, or a quick meal can all make them feel noticed and connected.

Keeping a routine can be comforting to children. If you are away from home, try to stay connected with siblings through phone calls and video chats. You may be able to continue routines like bedtime stories with your children over the phone, for example.

Your children’s school may be able to offer emotional support and offer extra reassurance for siblings during this time.

Charities like Children with Cancer offer days out for families affected by cancer. Other charities, like Lennox Children’s Cancer Fund and Kids Cancer Charity, offer breaks and respites.

Depending on your hospital and ward, arranging visits for the children to meet may also help them feel more included.

If you are in the hospital often, ask family and friends to step in and care for siblings or take them out.

Your child will only be discharged if they are well enough to leave the hospital. Usually, this is two to four weeks after their infusion.

Sometimes, symptoms of CAR T-cell therapy can appear after you return home. Knowing the signs and symptoms of infection is important so you can get them under control as soon as possible.

Contact your hospital team right away if you notice any of the following symptoms:

• Neurological symptoms like becoming confused or restless, especially if it comes on suddenly
• Quickly becoming more ill
• A sudden increase in pain
• Any possible symptoms of infection (see list below).

Symptoms of infection:

• feeling hot or cold (a temperature that’s higher or lower than normal)
• sore throat
• cough producing green mucus
• frequent watery poos (diarrhoea)
• being sick (vomiting)
• feeling dizzy or faint
• headache or stiff neck
• skin feeling red, hot or swollen
• burning or stinging when you wee or passing a small amount
• pain, redness or discharge (fluid) around the site of a central line
• pain, itching or unusual discharge from your child's penis or vagina
• new pain anywhere in your body
• generally not feeling well.

Your hospital team will tell you how to identify these symptoms, how often to look out for them and when to seek urgent help.

You will also be given a strict protocol to follow if you notice any symptoms. As part of the protocol, you may have to contact and attend your local hospital for review.

If anything feels “off” do not delay contacting your child's care team and attending the hospital for review.

It may help to pack an emergency hospital bag in advance, just in case you need to go to the hospital unexpectedly. We’ve included further advice about packing a hospital bag on our checklist for carers webpage. Keep a list of side effects and emergency numbers (including out-of-office contact details) at hand.

At all phases of the CAR T-cell therapy process, and for some time afterwards, your child’s immunity will be compromised. This means it is easier for them to catch infections.

Take extra care to avoid bringing infections home. This may mean taking extra precautions like wearing a mask and washing your hands often. It is also recommended that you and your child avoid busy indoor areas for a couple of months during recovery.

Practising good food hygiene is also important to avoid infections from food. We’ve included more information on food and hygiene on our caring for someone having CAR T-cell therapy page.

Many children who have had CAR T-cell therapy will go on to have immunoglobulin replacement therapy. This treatment boosts your child’s antibody levels when they are low. This is particularly important in fighting infection.

This is an infusion that they will have every three to four weeks for as long as the CAR-T cells are circulating in their body. For some children, it can be lifelong.

Depending on where you live, your child may have to visit the hospital for this treatment or may have it at home. Many children have immunoglobulin replacement therapy, and it quickly becomes part of family routine and life.

Your hospital team will give you more information and support regarding immunoglobulin replacement therapy at the appropriate time, and tailored to your child’s needs.

> Back to CAR T-cell therapy

This information was developed in partnership with Anthony Nolan and has been accredited with the PIF TICK, the UK's only quality mark for trusted health information.

Last full review 2024. Next full review due 2027. We make factual updates to the information throughout this period.

Thanks to Saskia Burridge, CAR T-cell therapy specialist nurse, for checking the medical accuracy of this page.

> Back to CAR T-cell therapy