Support for parents, family and friends

Supporting someone through their stem cell transplant journey can be really tough – physically, emotionally and mentally. But the good news is, you can access help from a range of places including social services, government benefits and charities, as well as your social network of friends and family.

Nobody expects you to do things on your own. Many people will be happy to offer you support but you also need to have the confidence to ask for it when you need it.    

If your sibling or another family member needs a transplant, you might be asked to be tested to see if you’re a match. Even if you’re happy to donate your stem cells, it’s still important to know what’s involved and think about the impact it could have on you and your family in the future. 

This section looks at the following situations and provides support and advice that will help both you and the person having a transplant.

My child is having a transplant

Hearing that your child needs a stem cell transplant can make you feel a wide range of emotions, from fear to relief.

Some parents and guardians are thankful that a potential cure is finally an option for their child. Others feel overwhelmed as they try to understand lots of new and complex information.

It can be a very challenging and emotional time for everyone involved. It’s essential that you get the support and help you need so that you can support your child every step of the way. Understandably, some people forget about their own needs during this time, but your mental and physical wellbeing need looking after too.

If your child is under the age of 16, you will have to give consent for the transplant to go ahead. Your child’s medical team will talk you through all the possible options and answer any questions you have.

Don’t be afraid to ask questions more than once if you haven’t fully understood. It’s an extremely stressful time for you and the team will understand. Take time to think about the questions that are important to you. Our meeting your consultant page has some suggestions that you might find useful for this.

In the weeks and months after the transplant, your family will be supported by a clinical nurse specialist (CNS) and/or a transplant co-ordinator. They will check that everything is going ok and answer any queries you have.

The SFS-MDR Body, Mind and Life recovery sections also provide information about what to expect during this time, and where to get more help when you need it.

Many parents find that being prepared for the approaching transplant helps them to cope with the situation.

If possible, try to visit the hospital ward beforehand to familiarise yourself with the surroundings and hospital staff. It might be a good idea to take your child along too, if you think it could settle their nerves. You should also check how often you can visit and the arrangements for staying overnight.

Talk to your child’s teacher or head teacher regularly to update them about the situation. They need to be made aware of the time off your child is likely to have, and the support the school will need to provide when they return.

When your child is in hospital they are entitled to continue their education. When they are fit and well enough, your child’s school or local council will provide the support needed to do this. However, if you have any concerns, talk to someone at the school so that plans can be put in place.

Having a stem cell transplant and staying in hospital can be a very difficult and stressful situation for children of all ages. They will be anxious of the unknown, the future and staying in an unfamiliar hospital.

Take time to explain to them what’s going to happen. (Hopefully the information on our website has helped you to understand the process better.) Try to not overload them with too much at once, and encourage them to ask questions so you can fill in the gaps.

For whatever reason, your child may not want to follow the rules surrounding infection control, or understand how important they are post-transplant. If this becomes a problem, try to engage with them about it – try making it a child-friendly experience that’s silly or fun. At the end of the day, you know your child better than anyone else, what makes them happy and how they are likely to respond.

It’s important to involve any brothers and sisters too, and see if they have any questions. They might not have the confidence to say they don’t understand, or could be feeling left out if the family’s attention is focused on their sibling and their treatment.

Your child will understandably be nervous and even frightened about what they are going through. They will look to you for support and reassurance that nobody else can give them. So you need to make sure you’re looking after yourself both physically and mentally during this time. After all, this is probably the hardest thing you’ve ever had to go through too.

Try to get a support network of friends and family in place to help you when you need it. Make sure there are people you can talk to about your situation and how you are coping, or who can take your mind off things for a bit. Don’t feel guilty about laughing and forgetting about your stresses for a short time.

If people offer to help but you don’t know what to say, these suggestions might come in useful:
– Childcare – If you have other children who need looking after while you’re at the hospital.
– Pets – Ask if they wouldn’t mind popping in to feed your pets or taking them for a walk.
– Batch cooking – Having a freezer full of prepared meals comes in handy when you don’t have time or energy to cook yourself. 
– Housework – Making sure your house is clean can help reduce the risk of spreading infections.

My partner is having a transplant

Helping your partner through their transplant journey has probably become the most important thing in your life. Although you are probably happy to do it, it can still be difficult and demanding, especially if you also have to earn a living and look after your family.

Just as your partner has had to get used to being less independent, it can take time for you to adjust to your new supportive role. It’s understandable that you might find it hard to cope with this responsibility, while also worrying whether they’re getting better.

Get informed – Finding out more about stem cell transplants and the potential challenges that lie ahead for you both will help you feel more in control of the situation. It will help you to prepare for all possibilities and reduce the chance of something unexpected happening. Your partner’s medical team will be happy to answer any questions you might have, at any point.

Accept help– Support from friends and family with household chores and other daily tasks can give you more time to care for your loved one.

Sometimes you might feel helpless or unsure about how to help your loved one through these tough times. Here are a few suggestions you might find beneficial:
– ‘Just being there’ – it might not seem like much, but keeping your partner company can stop them feeling isolated.
– Share activities together, such as jigsaws, films or a board game to pass the time in hospital. Carry on these activities as they recover but add in new ones, like exercising or going for a walk.
– Develop a routine. Make time for dinner and relaxation, and plan times when you’ll update other family members and friends on their progress. This can help things feel more secure and predictable.
– Travel with your loved one to hospital appointments if you can. You could help them think of any questions they have beforehand and make notes during the appointment.

Many partners feel guilty about admitting to their stress because they think they should always be strong for their loved one. However, it’s perfectly ok to talk to them about feeling this way, and it will benefit your relationship in the long term.

Enjoy a bit of ‘me’ time – find the time and space to enjoy things independently of your partner. This might be simply phoning a friend for a chat or re-starting a forgotten hobby. Nobody will judge you for taking some time for yourself. It will reinvigorate you and give you fresh energy to tackle the challenges ahead.

You need to make sure you’re physically looking after yourself as well as your loved one. If possible, try to maintain a healthy diet, sleep well and exercise regularly. It will help to make you feel better.  

You might need emotional support too. If you would prefer to talk to somebody else about how you are feeling, there are options available. Your partner’s medical team can put you in contact with a therapist, or you may benefit from sharing your story with people going through a similar experience.

Having a stem cell transplant can change the normal pattern of life and affect relationships, friendships and roles within your family. We have plenty of advice and support to help you address these changes within our sex and relationships and family sections.

Despite the best efforts of everyone involved, your partner’s transplant may not work. Their donor’s cells might not have been accepted by their body (known as graft rejection or graft failure) or the original condition might have come back (relapse).

This can be a really tough time for you and your family, but your partner’s medical team will talk through what happens next and the possible treatment options for your partner.

It might not be possible for your partner to have further treatment to cure their illness. At this stage, open discussions with their medical team are an important way of making sure everyone understands the options and agrees on the best approach.

If someone you love has died during or after treatment, it can be devastating. You may experience a lot of strong emotions that can be difficult to cope with – shock, pain, anger, guilt, depression, and longing. Grief is a natural process, but it can be overwhelming.

We have further advice and support on our Bereavement page.

My friend is having a transplant

When your friend has had their stem cell transplant, they will spend at least a few weeks in hospital to recover. This allows them to recover from the conditioning therapy they had before their transplant and gives their new immune system time to develop.

When they come home, it will take time before they start to feel anything like ‘normal’ again. Although they may look much better than they did before their transplant, they could still have a long period of recovery ahead of them.

Some people find their recovery from stem cell transplant is relatively straightforward, but for others it can be very difficult and demanding. Your friend may have to deal with long-term side effects such as Graft versus Host Disease (GvHD), fatigue and infections.

It’s also quite common for people to have to go back into hospital for further treatment. They will be monitored closely by their medical team so that if problems do happen, they can be dealt with quickly. They will also have regular hospital check-ups and blood tests to check that everything is ok.

If you want to find out more about stem cell transplants, our webpages can tell you everything you need to know. They explain what a stem cell transplant is, the treatment your friend will have and what they can expect during their recovery.

There are plenty of ways you can help your friend so that their day-to-day life is a little easier. You obviously know them better than we do, but the following suggestions might be useful. 

Childcare – If your friend has children, they may really appreciate you looking after them while they attend a hospital appointment or have a much-needed rest. The same might apply to their pets as.

Housework – Offer to help with the cleaning, shopping or preparing meals that can be frozen (for when they are needed later).

Update others – Your friend may decide they only want to see a few close friends to begin with. You could suggest that you keep the wider circle of friends updated on their behalf, so that your friend doesn’t become too overwhelmed.

Your friend’s immune system will not be as strong as yours, especially in the early stages of their recovery, which means they are at a greater risk of picking up an infection. So if you have a cold or illness, or even if you just feel slightly under the weather, it’s best to not see them – re-arrange any plans for when you are better.  

Your friend may seem uneasy or even paranoid when you visit because of the risk germs and dirt can pose to them. Try to be mindful of this, and make a point of washing your hands with either soap or alcohol gel as soon as you arrive.   

If you’re not sure about something, just ask! Your friend will appreciate you taking the risk of infection seriously. We also have more information on our dealing with infections page.

Sometimes your friend might go through a tough time in their recovery and they could turn to you for help and support.

Unfortunately, we can’t tell you exactly what to say to make everything ok. Often the most important thing is simply to listen, so they know that their problems are being heard.

It might also be worth bearing the following suggestions in mind:
– Ask open-ended questions that allow your friend to expand on what’s troubling them.
– Reflect back the main points you’ve heard. It will let your friend know you have understood.
– Try to use open body language and keep eye contact.
– Be supportive by reassuring your friend that how they are feeling is completely normal, and that there will be a way of getting through their problems.
– Don’t interrupt them, even if you think what you’re about to say is helpful. Wait until they have finished speaking first.
– Offering them specific help with a certain problem is better than saying you can help in any way you can.

Donating your stem cells to a relative

If you’re reading this, it’s most likely because someone in your family needs a stem cell transplant to treat a blood cancer or blood disorder. This also means that you could be able to donate your own blood stem cells to them. Although you may have already decided that you want to help, remember the choice is yours and nobody should pressure you into saying yes.

Before you go ahead with further tests to see if you’re a match, it’s a good idea to find out more about what’s involved. Our webpages provide information on what a stem cell transplant is, the treatments involved, potential side effects and your relative’s long-term recovery.

Sibling transplant – You will normally be tested first because a fully matched sibling (brother or sister) donor is the preferred option for patients. Siblings are the people most likely to be a perfect match for their brother or sister because they share the same parents. You have a 25% chance of being a perfect match.

Haploidentical transplant – In certain situations, your relative’s transplant team may consider using stem cells from a family member that’s a half match. This is called a haploidentical transplant. Siblings have a 50% chance of being a half match, while parents are always a half match for their children, and vice versa. This gives a much better chance of finding a suitable donor.

More information on how we test for matches and the different types of stem cell transplant can be found in our understanding transplants section.

If you’re a suitable match for your relative and you’re happy to donate your stem cells, the transplant centre also needs to make sure you’re fit and well enough to donate.

Depending on your situation, it might not be medically safe for you to donate. The transplant centre will talk to you about this in more depth.

It can be upsetting to learn that you’re unable to donate when you want to help. Try to remember the doctors make their decision based on what’s best for you and what’s best for your relative. If you have any concerns at all, you should discuss them with your relative’s medical team.

You will donate your stem cells in one of two ways. Most people donate through a process called peripheral blood stem cell collection (PBSC). Your blood will be passed through a small tube into a machine that collects the stem cells, and then returns the rest of the blood to the body.

Around 10% of donations are given as bone marrow. This involves a small surgical procedure, using a needle to collect bone marrow from your pelvis under general anaesthetic. 

You can learn more about the donation process on our donor page.

You may have to donate more cells to your relative at some point, as they may need something called a donor lymphocyte infusion (DLI) – a ‘boost’ of cells to make sure the transplant is working as well as possible. A DLI could also be an option if their original condition has come back.

This can be disappointing and worrying news, but even if you can’t donate, it’s likely that there are other options available to your relative. It’s important to not blame yourself – there wasn’t anything you could have done to be a better match for your relative.

If no related match is available, the transplant centre will usually get in touch with us and we’ll search for an unrelated match to donate to your relative. We’ll look through our register, searching all potential donors in Macedonia and overseas.

If you feel you would like to do something to help, there are plenty of other ways to get involved. You might want to encourage more people to join the our register.

More information on ways you can support is available on our donor page.

Bereavement and stem cell transplant

Losing someone close to you after a stem cell transplant can be devastating. Although it is a challenging treatment, there is often a lot of hope that it will give a long-term remission. You are reading this because sadly it has not been successful.

Bereavement is a very personal experience and there is no right or wrong way to grieve. What will follow is a mixture of emotions that can fluctuate over time.

The post-transplant experience leading up to the bereavement can sometimes be difficult and can leave you with questions and emotions that you might need help with. Although we cannot know what you are experiencing, this information is aimed at helping you identify those emotions and answering some questions that you might have.

The decision to have a stem cell transplant is a tough one. For some it is a choice, while for others it is the only option.

Recovery can be long and challenging and you might now have questions about what happened. Your partner or family member’s transplant team will be able to answer questions about their specific treatment, but this web section will address some of the general concerns you may have.

Was having the transplant the right decision?
Stem cell transplant is never considered by the medical team unless it is the best option for a long-term remission.

Many factors are used to decide if a transplant is necessary for your family member or friend, such as their diagnosis and their response to treatment.

In some cases, the transplant needs to happen quite quickly while in others there could be a choice about timing.

Knowledge is growing all the time about what factors improve outcomes for patients. All of this would have been discussed with a multi-disciplinary medical team before the decision to go ahead was made. So you can be sure stem cell transplant was chosen as the best hope of a cure for your family member or friend.

Why didn’t the transplant work?
Sadly, even with experience and knowledge, what we hope will be a long-term remission of blood cancer or a blood disorder does not always work. It can be a sign that the disease was aggressive and harder to treat.

Stem cell transplant is a strong treatment, so if it doesn’t work then there will be few other successful treatment options. The sooner relapse occurs after transplant, the poorer the prognosis (likely outcome) will be. After relapse and before other treatment options are decided, consideration would have been given to:
– the time of relapse
– the patient’s experience of graft versus host disease (GvHD)
– and the transplant’s impact on the patient physically and mentally.

Graft failure (when the body doesn’t form a new immune system from the new stem cells as planned) means more stem cells or a new donor will be needed to provide the new immune system.

The risk of infection will be high and, in rare cases, the bone marrow does not recover.

The transplant worked, so why did they still die?
In their worst cases, transplant-related side effects (such as infection and GvHD) can be fatal.
Sepsis (overwhelming infection) or chronic infections that prevent the immune system from recovering will leave the patient vulnerable and unable to fight infection. Along with their treatment, GvHD that is uncontrolled or involves several organs can also leave patients weak and vulnerable to infections.

In this very difficult situation, patients can get stuck in a cycle of being unwell and being admitted to hospital, making quality of life poor. To die from post-transplant complications is often complex and not due to just one side effect but a combination of side effects.

I knew it would be tough but I didn’t think they would die
We expect recovery from transplant to be challenging. Nevertheless, when it is tough and patients are struggling with side effects, our hope remains that this will achieve a long-term remission.

Patients with complex needs can deteriorate slowly and the constant cycle of admissions and infections can become almost routine.

However, the impact of this will be felt physically and mentally by the patient, and the demands can prove too much. Despite this, it can feel like a shock when patients do not recover.

It all happened so quickly, it was so unexpected
Sepsis (overwhelming infection) is a risk for any patient recovering from a transplant. It is always a concern for those patients who are struggling, but even those who are doing well are at risk.

In any situation, sepsis will be an emergency and will probably involve treatment in an intensive care unit (ITU). It can be overwhelming and scary, often taking patients away from their usual environment into ITU with healthcare professionals they do not know. Deterioration can happen in days or even hours, and it can feel totally unexpected when the patient dies.

It can feel unfair that, despite everything, your relative or family member has died. It is normal to have many questions in a situation like this.

Talking about how you feel with those who were included in the decision-making will help clarify the choices that were made about treatment. This might be with healthcare professionals or family members who were involved.

You can arrange an appointment to speak with the consultant or clinical nurse specialist (CNS) if you would like to. It is the medical team’s responsibility to explain the decisions that were made, so don’t feel like you shouldn’t ask them.

Grief is a very personal experience and everyone will react differently. There is no right or wrong way to grieve, and how you feel will change and fluctuate over time. Grief might feel overwhelming and intense at times, while there will be other periods that feel calmer.

Below are common feelings expressed by relatives who have lost someone after a transplant. You might also experience some of these, and you might experience them at varying times. But it is completely personal. Don’t place expectations on yourself about how you should be feeling, or how long you should grieve for.

I feel so sad
Having a stem cell transplant can bring hope, and it can be devastating when that hope is lost. The experience from diagnosis, to transplant, to now can leave you feeling drained and exhausted.

Sadness can feel overwhelming and it might seem hard to get through each day. Although these feelings can come and go, over time the intensity should decrease and you will have periods that feel more manageable.

I feel angry
In the same way that lost hope can bring sadness, it can also bring anger. Recovery after transplant might have been difficult or it could feel like their death was unexpected, and you could now be asking yourself: ‘Why?’

The effect on the family, and your sense of loss, can leave feelings of anger, frustration and blame.

Although unpleasant, these feelings are completely normal and the immediate period after the death can be stressful. It’s important to not allow these feelings to grow but instead to talk about how you feel.

I feel lost
Feeling lost and unsure what to do next after a bereavement is very normal. This is especially common after the funeral, when your family and friends must get back to their normal lives and you can be left with large parts of your day that feel empty.

Building relationships with healthcare professionals who were involved in your relative or family member’s care, or with other patients or relatives, is a common way of coping at the time. They can provide insight and support about life after transplant, and it might now feel strange to not see them or have that support.

Perhaps you were the carer, attending all the regular visits to hospital and adapting your home life. You may have given up your job and social life and now you may feel there is a hole.

I feel relieved, I didn’t want to see them suffer anymore
Watching someone you love in distress is tough. The duration of time that this can go on for after a transplant can be prolonged, so to feel relief that it is now over for them is completely normal. It is nothing to feel bad or guilty about.

Due to the challenging nature of recovery, it is common to feel that you already lost part of the person you loved.

You might feel that they changed, or your relationship with them changed. The pressure on patients, families and relationships is hard, and quality of life for everyone involved can be severely affected. It is ok to have a sense of relief that it is now over.

Physical effects of grief
Grief can affect you physically as well as emotionally. You can feel exhausted, unmotivated, unable to eat, unable to sleep and might even feel ill. You might become more susceptible to infection because you are run down.

As hard as it might seem, you now need to focus on keeping yourself well. Just managing a normal routine of getting up every day, eating well and a bit of physical activity will help you in the long run.

With any of these feelings, it’s important that you talk to someone. Talking to family and friends can help, especially those who have been involved and have an idea of the experience you had after the transplant.

It can be hard for anyone to really understand the impact and emotions that you might be feeling.

Consider talking to people who have been in the same or similar situations, and ask at the hospital or your local hospice if they have any support groups for relatives.

Professional help with a bereavement counsellor could help. Saying out loud what you feel can be therapeutic, as well as having someone to listen. You can be referred for counselling by the hospital, GP or local hospice. Even if your relative or family member was not being cared for at the hospice, they might have some support services that you can access.

Support groups
If your relative or family member’s diagnosis was not a type of blood cancer, or they died of post transplant complications rather than relapse, it can be difficult to access cancer support groups.

But there are other types of support groups you can access. We’ve listed some below, as well as suggestions for online groups and forums if you feel this format would be better for you.

If you have questions about any part of the transplant, you can arrange to speak to the consultant involved in the care. Give yourself some time to gather your thoughts and consider your questions, and perhaps take someone with you for support.

Practical help
Ask family and friends for help with the practical things such as funeral arrangements, informing banks and cancelling bills etc. They could help with the basics like tidying, cleaning, and cooking meals, too. Family and friends often want to help during a time like this but don’t know how to, so this could be a good way for them to give you some support.

Just like adults, children grieve in different ways and there is no right or wrong way to go through this process. Grief will be affected by the child’s age, their understanding of what has happened and why.

Losing someone close will be devastating. Their reactions can vary greatly and can change over time, and that’s OK.

It can be difficult to support children when you’re also dealing with your own grief.

This is a hard balance but it’s important that they see that you are grieving too. Don’t be afraid to show your children that you are upset but do explain why you are upset, so they know your distress wasn’t caused by them. Understanding that it’s ok to show emotion will encourage them to do the same.

During recovery after transplant, children might have spent long periods away from the person they loved and home life might have changed. Grandparents might have been more involved, for example, or they could have spent more time with close friends while you were at the hospital.

This can mean that relationships within the family or with friends can change, and children may need time to adapt. They also might have seen physical changes, such as weight loss or skin GvHD, which may have been hard for a child to process and understand. Talking about these things can make sure difficult feelings aren’t bottled up.

Like adults, a child’s reaction to death can include sadness, anger and feeling lost, but they might not know the words to express how they feel.

What support is available for children?
Many children manage their grief well with support from their family and friends.

However, if you are worried about how your children are grieving, there are some good helplines and websites which can help you decide whether they will need extra support and who to contact. Your hospital, GP and local hospice are also good places to ask for help.

Schools can offer extra support at this time. It is helpful for them to know what has happened so they can help children who need it and take account of the death if academic tests are coming up. Schools often have staff who can give your child time to express their grief using talking, drawing or play. See ‘Other useful contacts’ below.

The journey through transplant and treatment can be challenging, and you might feel as if life has been on hold. You might now want some time out or just some sense of normality again.

These feelings are completely normal. Over time your bereavement will change. Allow yourself some short, sad moments and in time you will regain hope.

These can be especially challenging. Although it may be the occasion or date that you dread, often the build up to the day can be worse. You, your family and friends might choose to prepare yourselves for anniversaries differently. This is very personal, and you should all cope with it as you wish.

Support from others
This can feel overwhelming in the beginning and then, as people return to their normal lives, support can dwindle. This can be hard but try to find a focus to help you cope, like returning to work or setting yourself little goals. Volunteering or taking part in peer support with other people who have had similar experiences can also help.

Bereavement can be especially difficult if the donor for the transplant was you or a family member.

Being a donor brings optimism, but it can also feel like a responsibility. When someone dies, the donor can feel somehow responsible for the transplant not working.

This is, of course, not true as without the donor the chance of survival might not have been available.

If the donor was a family member, it’s important to consider their feelings. Make sure they are not carrying around feelings of guilt or anger, and encourage them to talk about how they feel and to access support if needed.

Contacting the donor
For families of patients who had an unrelated stem cell donor, you might have been thinking about contacting their donor. This is completely up to you. Donors do not expect to be contacted, so don’t worry if you don’t feel like you want to.

Here are a few things to consider:
– Like with everything, we would advise you to give yourself time before deciding to make contact.
– Emotions are high and feelings can change, so it’s good to be sure that this is definitely what you would like to do.
– Your contact might be the first time the donor learns of the death so it could be a shock to them. They too might feel a sadness and a loss.
– Some donors choose to not know what happens after they have made the donation, and this is their choice. There is no guarantee that they will accept your contact or respond.
– Once contact has been made, the donor might wish to stay in touch so you need to think about what your expectations are, and how you would like to manage this long term.
– For some international donors, there might be some restrictions on contact. Our Donor Follow Up team will be able to advise on this.