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When your grandchild has cancer
Being the grandparent of a child diagnosed with cancer comes with its own set of issues and complications
Grandparents are usually a welcome part of the child’s life before the diagnosis of cancer. Their presence can be extremely comforting to the child.
Some grandparents may not have been close to their grandchild before the cancer, or even if they were, they may not know how to approach their grandchild in this situation. It is important for grandparents to talk to their child (and/or their partner) first about how to relate to their grandchild. This may be an opportunity for grandparents to form a closer bond with both their child and grandchild.
This booklet answers some of the many questions which grandparents of children with cancer told Redkite they would have liked answered when their grandchild was diagnosed and during their grandchild’s treatment phase.
Many cancers in adults, such as some lung and bowel cancers, are partially caused by environmental or lifestyle factors. These types of cancers are almost never seen in children. For most children with cancer, it is not possible to identify an exact cause.
As far as we know, neither you, your grandchild’s parents nor your grandchild did anything to cause the cancer, or could have done anything to prevent the cancer. Even if you have had cancer yourself, it is unlikely that it is related to your grandchild’s cancer.
At diagnosis, so many questions arise, and at this devastating time the child’s parents are not
in a frame of mind to answer questions. [They are] in a state of shock….
When the cancer is first diagnosed, many tests will be carried out to find out more about the cancer and classify exactly what it is (diagnosis). Other tests check for whether the cancer has spread to other parts of the body (staging). Tests are also performed to help understand how the cancer is likely to respond to treatment. All of these tests will help the doctor choose the best possible treatment for your grandchild.
Treatment options should be discussed carefully with the doctor, depending on what is relevant to your grandchild’s cancer. Sometimes treatment will involve the child being enrolled in a clinical trial. Clinical trials usually test new treatments and compare them with the current best available standard treatments, so as to improve current treatments.
Treatments include surgery, radiotherapy and chemotherapy. These treatments may be used individually or in various combinations. The aim of surgery is usually to remove the tumour and it’s generally a once-off procedure. Radiotherapy is the use of high-energy radiation to kill the cancer cells, and takes place over several days or weeks.
All information is vital to help you understand the process of treating and dealing with childhood cancers.
Chemotherapy uses specifically developed medications to kill the cancer cells. This medication can be given by several routes, such as by mouth, or by being injected into veins, into the spine, or under the skin. Chemotherapy is sometimes used to shrink the tumour before surgery to allow for a less extensive operation and better tumour removal.
The child may also have a bone marrow transplant, in which healthy new marrow is given if needed. In some circumstances, the child might have more than one bone marrow transplant.
Your grandchild may also receive supportive care, such as antibiotics to treat infections, blood products to treat anaemia (low iron levels in the blood) or prevent bleeding, and other medicines to treat nausea and vomiting. Your grandchild may also receive medication to alleviate pain if necessary.
The initial goal of treatment is almost always to cure the child with cancer and return them to their home and school life. However, sadly not all children can be cured. If this becomes the case, the goal of treatment is changed to address the physical, psychological, social and spiritual needs of the child.
It’s important to note that a child’s journey with cancer has its highs and lows. There will be times when the child with cancer feels very unwell, and there may be other times when the child feels well enough to attend school and carry out other activities.
Most hospitals have guidelines about visiting a cancer ward. These may include a requirement to wash hands regularly, making sure children don’t have access to the kitchen, refraining from using mobile phones inside the ward, and not visiting the ward when unwell (i.e. if you have a cough, cold, influenza, vomiting, diarrhoea, shingles, etc).
For children staying overnight, each hospital has different types of wards. Some hospitals have up to six children sharing one area, while other hospitals have private rooms. Often, when children are staying in shared rooms, the hospital staff try to match the children’s ages when possible. Sometimes children need to be in an isolation room to reduce their chance of infection or if they are unwell.
If your grandchild is not staying overnight, they may attend clinic regularly. This usually means a visit to see their oncologist and receive chemotherapy that can be administered in the day unit. There is usually a waiting and play area close by. Once the chemotherapy has been administered, and if the child is feeling well with no side effects, they are able to go home. This, however, is usually a long day.
Your grandchild’s hospital may have other facilities to help make parents and visitors more comfortable. These include a laundry and shower facilities, internet access, children’s play areas and lounges to watch television. Some hospitals have a Starlight Express Room and a hospital school as well. The staff at your grandchild’s hospital can tell you more about what is available.
Before the 1970s, childhood cancer was almost impossible to cure. Thankfully, with new treatments, most children today survive childhood cancer. Some types of cancer are easier to treat, while others are more difficult. Your grandchild’s doctor may be able to give your grandchild’s parents more information about the rates of survival for the specific cancer. With better treatments today, most children go on to live full and active lives after surviving cancer.
When doctors can find no more evidence of cancer in the body, the child is considered to be “in remission”. Many children receive further treatment once in remission to mop up any microscopic cells not detected by even the most sophisticated tests. The decision about the length of treatment is based on evidence from previous tests.
In this booklet, we use the term “survivors” to mean patients who have survived five or more years after their diagnosis and have been off treatment for at least three years. According to data from the Australian Paediatric Cancer Registry (data from 1983-2006), about three quarters of children diagnosed with cancer are still surviving 20 years after their diagnosis.
Relapse refers to the reccurrence of cancer after the child has been in remission. The cancer may return to the same place in the body as before, or in another place.
The chance of the cancer coming back is different for every child, depending on the type of cancer, type of treatment and length of remission. There is also a chance of a second (different) cancer developing later, either as a result of the treatment for the first cancer, or caused by something else. Your grandchild’s doctor can be asked about the chances of these happening, specific to your grandchild’s situation.
When cancer comes back, it can be devastating for the family. Family members may feel less hopeful than before about the outcome, although many children who relapse do survive the disease. Your grandchild’s doctor will discuss treatment options, which may differ from the first treatment. Treatment for relapse may be more intense than the treatment given to the child initially.
Cancer relapse can make emotional, financial and spiritual issues more challenging for all family members. If you feel it is an option for you, you may want to consider seeking support so that you can continue to care for your child, grandchild and other grandchildren.
After spending about 18 months with our life on hold, I am having difficulties returning to normal activities – a big part of this is fearing relapse.
Acute lymphoblastic leukaemia
Your grandchild’s parents will likely be having a difficult time after their child is diagnosed with cancer, and they may need to turn to other people for help. For some parents, this may be their own parents. For others, it may be their siblings or close friends. Some parents may not want their own parents to share their burden. All of these situations raise specific challenges for grandparents.
Also, the way you relate to your child’s partner is probably different to how you relate to your child. It is important for you to be honest about your relationship with them and have open communication about whether they need or want you to support them. Your child’s partner may already be well-supported by their own parents and other supports, such as friends. Parents also may not agree with each other all the time. There may be extra challenges for parents who are not together, as well as for single parents.
- Cooking and cleaning – help keep the household running.
- Caring for siblings. Whether it’s staying with your other grandchildren while their parents are at hospital or just making the effort to spend extra time with them, parents often say this is one of the most useful things for them.
- Transport – taking various members of the family to where they need to be, hospital or school can be a huge help
- Accompanying parents on clinic days as they can be long and stressful, particularly on days when your grandchild is receiving an anaesthetic.
- Running errands such as grocery shopping or collecting medicine from the pharmacy.
- Talking to other family and with friends – being a point of contact can take a lot of pressure off the parents to keep everyone up to date.
- Providing a listening ear – giving your son or daughter a safe place to talk about their worries and fears.
- Staying with your grandchild so the parents can have a break – whether that’s at your house or theirs, having a sleepover means a change of pace for everyone.
- Visit them in hospital. Bring games, books, DVDs to watch together, old photo albums to go through – whatever they enjoy doing with you.
- Talk to them and listen to them. It can really help to have a trusted adult other than a parent that they can speak openly with.
- While it’s very important to reassure them, let them have the opportunity to discuss their fears.
- Help them with schoolwork. If they’re up to it, keeping up their studies is a great way for children to feel normal and focus on the future.
- Video-chat your grandchild if you don’t live nearby.
Supporting the other grandchildren
Often the siblings of a cancer patient feel forgotten or overlooked as the family focuses on the sick child. Grandparents can play an incredibly important role in not just helping to physically look after them, but also in making up for some of the attention their parents can’t give them right now.
Many grandparents worry about overstepping boundaries. Some say they feel unsure when it’s the right time to offer advice or help. This uncertainty can result in them sitting back and waiting to be asked, rather than offering support as they would like to.
You may also find yourself in the firing line for occasional outbursts from your own child as they struggle to cope with their own emotions. Try not to take this personally. It can be a fine line to walk, but offering help is still usually the best approach.
Learning to recognise cues and checking in with the social worker about what the family might need can be useful. The social worker won’t break the confidentially of their professional relationship with your grandchild or their parents, but they’ll still be able to talk with you about the types of things that are usually helpful.
Making specific offers of help rather than general ones and agreeing on the best way to keep in touch can also make things easier. With so much going on, phone calls can sometimes add to the pressure. Using text messages or email to communicate with your grandchild and their parents can make communication easier.
Many grandparents see their own feelings as less important than other people’s. They talk about their role as being to stay strong for the family.
Many also worry about the strength of the emotions they’re feeling. It’s very common for grandparents to express that they wish they could swap places with their grandchild. Often they talk about feeling guilty about having lived a long life and some question their spirituality in the face of what seems so unfair.
It’s important to understand that all of these are natural and normal responses. Your feelings are important and legitimate. By finding ways to express and deal with them, you’ll be in a better position to help others.
Parents can connect with some great support services through the healthcare system, but often these aren’t extended to grandparents. You might feel you’re missing out on the sense of community that happens in hospitals and the professional support offered there. If you’re supporting your child, you may be taking on their grief and emotions too, so it’s even more important to find ways to look after yourself.
Redkite is here for the whole family, and if you’d like support, please contact our team on 1800 REDKITE (1800 733 548) or support@redkite.org.au.
Make sure you find ways to take care of yourself. This could be as simple as keeping up with friends, eating well, exercising or just taking time out to rest. You’ll be showing the way to other family members if you can do this.
If you have a partner, part of your self-care may also include looking after your relationship. Cancer can “get in the middle” of people, especially those who have different coping styles. It can help to acknowledge that not every person deals with emotions the same way, particularly ones as confronting as those that cancer brings.
Experts often talk about the different way men and women cope, with all those clichés about women talking, and men disappearing to their shed. Really trying to hear and understand what the other person is saying will always help.
Redkite understands how helpful it can be to know you’re not alone in this situation. We run free support groups for people whose grandchildren have cancer. This is an opportunity to connect with others who’ve had similar experiences, share and learn from each other. For more information about the next group call 1800 REDKITE (1800 733 548) or email support@redkite.org.au.
If you prefer individual support, our professional support team has years of experience talking with grandparents dealing with a grandchild’s cancer by phone, email and in person.
Download the full guide
There’s more to be found in the full 36-page Guide for Grandparents of Children with Cancer, including managing your relationships, supporting yourself and where to find more information.
Did you know…
Redkite provides emotional and practical support to anyone connected to a child with cancer, including grandparents, extended family and friends.
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