The time before the message
It can be done in different ways to discover that a child has cancer. Some children have had diffuse symptoms for a long time and may have been on many different examinations before, as a parent or physician, one begins to suspect that it may be cancer. Other children have more sudden symptoms. Maybe the child comes to an emergency room where doctors tell them that they need to immediately investigate the cause of the symptoms, and that it may be cancer.
For some families, the suspicion of cancer has been around for a long time. Perhaps you have felt frustrated at not having a clear explanation of the symptoms. For others, the message comes unexpectedly. Often the message causes a shock and changes the whole life for the child, the immediate family and many others around the child.
It can be good to know that the time that has passed while the child has had symptoms, without the diagnosis being made, rarely affects how it will go. Instead, it is the nature of the specific form of cancer that affects the prognosis. In general, there is a good chance of getting rid of the disease. Four out of five children who get cancer survive. But it can take a long time and be demanding for both the child and the environment.
The diagnosis may be delayed
Once the health care has begun to suspect that it is about cancer, the child usually gets to one of the child cancer centers located in Gothenburg, Linköping, Lund, Stockholm, Umeå and Uppsala. There, most of the investigation is often done, which will lead to an accurate diagnosis and treatment plan.
At the beginning of the care, sometimes part of the investigation and various examinations can also be done at the hospital where you live, so that the child does not have to be far from home. Then the child cancer center usually helps with the investigation and find out more about the child and the family and prepare the treatment.
It can feel exhausting to meet many representatives of different parts of the healthcare system during a difficult time in life, but also confident that many are involved in providing the child with the best care possible. Much of child cancer care is about adapting care to the child’s age and needs, while there is a basic treatment that is similar wherever you live in the country.
Different ways of getting support
The time between the suspicion of cancer and before the diagnosis is complete, is for most families a difficult wait. It has been found out that the child can have a serious illness but cannot yet get full information about how the treatment should go or clear information about what the chances are of the child getting rid of the disease.
It can take from a few days to several weeks to arrive at the right diagnosis. Some parents need to be laid off for crisis response during this first time.
The Child Cancer Clinic staff is very used to such situations and usually try to coordinate their resources to provide the help each family needs. In addition to doctors and nurses, there is usually a curator and sometimes a psychologist. They can inform about everything that happens and listen and provide support. The Children’s Cancer Foundation has information that can be helpful. The various regional departments within the Child Cancer Foundation can provide some practical support depending on where you live.
Many may need help from relatives and friends, but it is common that even close relatives and the surrounding area react with shock during the first time and have many questions – questions that may not yet have clear answers.
Surveys and samples
The child may need to undergo many different examinations with, for example, ultrasound, computer tomography and magnetic camera. In addition, the child may need to be anesthetized for the doctors to be able to take samples from the cancer tumor and prepare in different ways for the treatment to begin. The child also needs to submit blood samples that are initially taken in the finger or arm fold.
All examinations and tests are done to find out what kind of cancer the child has, how far it has developed and to be able to plan for the right kind of treatment.
Children may need extra help with the sampling
Some children find it difficult to undergo examinations and are afraid of getting stabbed or lying under, for example, an x-ray device. Those who work at child care centers have extensive experience of children of all ages and with various major concerns. The staff is usually well prepared to make examinations and sampling as good as possible for each child.
Ask as much as you need about the various examinations to make yourself feel calm. It is also good to tell what the child may think is difficult or uncomfortable for the staff to pay extra attention to these particular things.
A child being treated for cancer over time becomes more and more used to the many tests and examinations, but that does not mean that the child feels comfortable with them. Some children react more strongly in the beginning and less later. For other children it may be the opposite.
It is common for vein catheter to be operated
During this period, some children will receive a small box of metal or plastic under the skin high up on the chest. The box has a thin tube attached to a blood vessel. The dose is called subcutaneous venous port, or port-a-cath, and the purpose is for the child to avoid getting many stings directly into the blood vessels during the treatment period. The skin on the chest where the box is seated can be anesthetized with an ointment before sticking for sampling or medication.
Other children get a so-called central venous catheter , CVK, which is also a thin tube attached to a blood vessel, but where the end of the tube hangs outside the skin. The child is anesthetized before a venport or CVK is operated on and the operation itself takes less than an hour.
Existence after diagnosis
Once the child is diagnosed, it often means a certain relief for many families, although of course it depends on how sick the child is and how good the chances are for the child to get rid of the disease.
If the child does not have acute symptoms, it is usually possible as a parent to manage to deal with his or her own anxiety by talking to doctors and other staff in the ward. If, on the other hand, the child is very ill before the treatment begins, the parents usually feel ill for a longer period and have full follow up with the treatment of the child day by day, until the treatment begins to help and the child is feeling better.
Children can react differently
A small child lives in the present and is not aware of what is going to happen. For slightly older children, it may be difficult to get a sick message and understand that an often strenuous and sometimes long treatment period awaits. Different children and young people react differently to the message. Some get angry and protest while others get sad. Some keep all the emotions inside and it can be difficult to know how they actually react.
For teens, it can be extra difficult, as it is an age when one often wants to free himself from his parents and be like his peers. Having to see oneself as ill and understanding that one will be different from one’s friends can be difficult to accept and for some it leads to dramatic and strong reactions. From having come a long way in their release from parents, the teen can be forced back into an addiction that can be perceived as stressful.
Child cancer care has many different skills just to be able to cater for children of different ages and with different needs. The staff try to deal with and address the child directly, but the parents are important as agents for their children, especially for the smaller children.
“Will I be healthy?”
In the beginning, the most common question from both children and parents is: “Will I be healthy?”, “Will our child survive?” For the most part, the answer is yes, as four out of five children who get cancer get rid of the disease.
If the child has a poor prognosis, it is more difficult to move on from this first question, although the doctors who will treat the child describe all the chances that exist after all, for the child to get rid of the disease. Each individual is unique and therefore statistics cannot answer how it will go for this particular child.
It is common to commute between feelings of hope and confidence and feelings of strong anxiety and anxiety. Each family must find their own way of dealing with uncertainty and emotions. Some choose to focus entirely on things going well, while others have a great need to talk about the worry that things might not go well. For most people, it is a combination of both of these approaches that are mutually exclusive.
Clearer routines after diagnosis
When the treatment begins, many families tend to feel a little calmer because life gets a clearer pattern. The treatment follows certain schedules, or protocols, and after some time the family learns how the child reacts to the various parts of the treatment. You have close contact with all staff and have many opportunities to ask about everything you wonder about. It may be necessary to ask the same things several times to really understand, especially when you are under pressure and have many emotions and thoughts to deal with.
During the treatment period you meet many different people who take care of the child. Not everyone does and talks the same way. If you have difficulties with how someone in the staff does or says, it is good to ask for a call and try to explain how you or the child know it. The staff is used to the fact that families have different wishes and needs and usually try to adapt as much as possible to make the family feel good. Most often it is someone or some of the staff that you feel extraordinarily trusting, and then it is good to ask to have contact with those people as often as possible when it comes to important questions about the child.
Play therapy and hospital school
A child cancer department is tailored to families spending a lot of time there. The staff usually try to create different living rooms that are better suited for young children or for teenagers where children can play, read, watch movies or use computers during moments when they are not in their own room. Children who receive treatment that require an overnight stay are given their own room. There is usually room for a parent and sometimes also for siblings to sleep over. Rooms often have a TV and DVD player. There are lockers with films to borrow from the department. From the play therapy department you can borrow games, toys and other toys if you are not allowed to leave your department because of the treatment.
Staff from the play therapy often visit the departments and can participate in playing community games or start creative activities. When children are allowed to leave the ward, but still have to stay in the hospital area, they usually enjoy the play therapy. There are various toys and materials for creation. Staff help with various activities.
For children who are very much in hospital there is also a hospital school where a teacher can help with tasks and homework that the child does not have time for in their regular school.
Being an adult in a children’s ward
For adults, it can feel painful to spend a lot of time in a small hospital room, and in a ward adapted for children, even if one wants to be close to their sick child. Most often you are forced to be more isolated and unemployed than you are in your ordinary life, while knowing that all ordinary life goes on outside the hospital. One can feel an unreality of being so shielded from one’s everyday existence.
For example, bringing a computer or books, writing a diary or using the mobile phone can be different ways of getting a more relaxed life. At the same time, you are often forced to interrupt what you are doing to talk to staff, accompany the child on a sampling or just be close to their child, depending on the child’s age and how it is doing.
Overall, it’s a rather exhausting existence for a parent, with many new routines and many strong feelings. Relationships in the family can be put under pressure when the focus is on the sick child and its siblings. At the same time, most people have to deal with their employer, the Social Insurance Office and other contacts outside the hospital, which can be stressful. Then it can be nice to talk to other parents in the department who have similar experiences. Usually there is a small kitchen or coffee room where parents can sit while the child is asleep or taken care of by the staff.
Siblings also need support
Most parents usually feel that it is difficult to meet the siblings’ needs when a child is seriously ill. Often one alternates between living with the sick child and living at home with one or more siblings. If you have relatives or friends who can help, an important task for them may be just to give some extra attention to the siblings who are there and accompany them in their daily lives outside the hospital.
In the country’s children’s cancer departments there is a so-called sibling support. The sibling support can take the initiative for playtime, conversation, excursions or other activities as the sibling feels that they are at the center and not the sick child.
If you live far from the hospital
During parts of the treatment, the child may be cared for in a hospital nearer the home, but periodically most children need to be in a pediatric cancer ward. If it is a long journey, one adult may need to live with the sick child and another adult may stay at home with one or more siblings who continue the usual everyday life with kindergarten, school and peers.
At most child cancer centers there is a Ronald McDonald house where all or part of the family can live during parts of the child’s treatment. There you can cook, wash, watch TV and socialize with other families within walking distance of the ward where the sick child is being cared for.
Consultant nurses inform the environment
At a pediatric cancer department, there are nurses who are usually called consultant nurses, but who were previously called Märtysisterar. Two consultant nurses work at each child cancer center. One works with brain tumor patients and one with children who have another cancer. The task of the nurses is to act as a link between the sick child’s family and various health care units, the school and peers. An important task is to disseminate information, for example to school and classmates, when a child has cancer.
Almost all children will leave the hospital environment after a shorter or longer period. Therefore, it is important to let the child stay in touch with his or her normal life during the illness period, even if life has suddenly changed.
Concerns about infections
As a parent, it is easy to become overprotective and worried about infections or the risk of injury in the child’s usual environment, while especially young children themselves most often want to live in the present and do not consider themselves different from their peers.
It can be good to discuss with the healthcare staff about what things the child can or cannot do in their everyday life outside the hospital. Each child is different and usually shows himself what they want and want. For most children, there are no special restrictions on what they can or can do.
Financial and practical support
Families can look many ways. There may be one or more adults. Some parents are separated or divorced, but must suddenly reunite because a common child has had a serious illness. This can put a great deal of pressure on the surroundings in the form of step-parents, new partners, siblings and step-siblings. Most people usually overcome their own feelings and need for the situation to be so special. But it may require a lot of the parents who both have to deal with the needs of the sick child, their own feelings of sadness and anxiety and all the reactions from the surroundings.
Similarly, parents who live together can have problems when a child gets a serious illness. They can react differently and sometimes feel lonely and vulnerable even within the relationship.
Tell about the family situation of the trustee or others in the care staff to get support if needed.
Get help from people all around
It can feel difficult to acknowledge the need for help and to ask for it. Most people in your area want to help if they get enough clear instructions. The more you can get your surroundings to be supportive and help, the more you as a parent can feel that you are not alone and that you can concentrate on the sick child.
Some parents have used a blog as a way to tell everyone in the area about what is happening without having to constantly call and tell many people. You can also use the blog to ask for specific help: “Can anyone cook for us and put outside the door when we get home late tomorrow?”. The blog can be password protected if you do not want outsiders to read it.
Help with the economy
As a parent, you can talk to the hospital’s curator for advice on how to handle the finances when a child gets a serious illness. Most parents can use a benefit from the Social Insurance Office called Temporary Parental Benefit for seriously ill children and which can be taken out by two parents at the same time. Another allowance that may apply to some is health insurance . Some parents need to be on sick leave periodically due to crisis response. In this case, it is not the child’s treating physician who should sign the certificate, but another physician, for example at the health care center or at the occupational health service, so that the ill-written parent can get the right help.
After the treatment
When the treatment is complete, the child is often affected in some way and needs time to regain his powers. Many children have been given cytostatic treatment which has caused them to lose their hair. A few weeks after the last cure, the first, slightly chubby hair growth usually returns. The hair sometimes looks different than before when it grows out. It can get darker, thicker or more curly, at least during the first time.
Most people need new vaccinations
Usually, within a few weeks, the child also regains his normal blood values, which is mainly noticed by blood tests. However, many children have lost the effect of previous childhood vaccinations through the treatments and need to vaccinate again for a period after treatment. The child is given an individual vaccination plan by the doctors. The child can be vaccinated either on a return visit to the pediatric cancer department, at the BVC or in the school health care. It must be different for a long time after treatment for different vaccines for them to have an effect.
A long time of post-checks
The child will regularly be subjected to various post-checks. They are initially done primarily to check that the cancer is truly gone and not recurring. Samples and examinations that are common are various forms of blood tests, magnetic camera examination , computer tomography and ultrasound examination . How often the post-checks are done and what is included is described in detail in the treatment protocols that all pediatric cancer departments work on.
The length of time the child goes to post-check depends on the diagnosis and how the child has responded to the treatment. But it is common to go on post-checks quite often during the first year, about every three months to every six months. Then more rarely in the second year, and then even more rarely.
At about the age of 18, the child has a termination interview with the child cancer department. Then they can get a referral to post-check-ups at an adult clinic, if needed, or to a late-stage reception. A late-effects clinic is a follow-up clinic for former pediatric cancer patients.
Relapse can also be treated
For several cancers, the prognosis is good even in a relapse, ie if the disease has returned. The treatment has become so effective that children with certain diagnoses can receive less powerful treatment than was usual before. This means that the risks of late complications are reduced. At the same time, there are more powerful treatments to increase if the child has a relapse.
Late complications of treatment
As the risk of relapse gradually decreases, some of the after-checks are more and more focused on whether the child has been physically or mentally affected by the illness and treatment. It may be that the growth of the skeleton or the production of thyroid hormone has been affected by radiation therapy. It may also be the case that fertility after the cancer treatment is reduced or may have disappeared completely due to cytostatic drugs.
All treatment of children with cancer is based on the fact that the treatment must wipe out the cancer without causing too much damage to other parts of the body.
Relief but also insecurity after treatment
During the time the child is being treated, it is common for the child’s close adult to feel a sense of security that the child is cared for by the nursing staff and that the disease is combated. When the treatment is finished, you can certainly feel a great relief that everything is over, but many families may also feel nervous. Suddenly you have to live as usual again, but still with a concern that the treatment has not been sufficient and that the disease can come back.
It can also be difficult to commute between focusing on ordinary life at home and on all the feelings and thoughts that are aroused during regular post-checks. This is something you have to live with for a long time, even though it is usually worst during the first time. It usually gets easier the longer it has been since the child had the disease.
To continue with life
Many children go on with their lives without thinking about what has been. For adults it can be more difficult, especially since during the illness many emotions have been forced away to function as a good support for the child. When everyday life comes back slowly, it can feel difficult to cope with the emotions you can get while the surroundings may expect you to be happy, relieved and satisfied.
There are studies that show that many parents feel mentally ill the time after their child is finished, but also studies that show that children and adolescents do not feel worse than other peers after undergoing cancer treatment. It varies greatly between different diagnostic groups and different treatments. Most often it will feel better even for the child’s relatives. It can take more or less time and life may not be exactly the same as it was before the illness.