Families are thrust into confusing worlds of long-term hospitalizations and treatment plans. There are increasing responsibilities to juggle, such as addressing a sick child's concerns, considering the possibility of sibling donors in stem cell transplants and mounting medical bills.
The 25 years that psychologist Joanna Breyer spent working with children who have cancer and their families at the Dana-Farber Cancer Institute and Children's Hospital Boston inspired her to write "When Your Child Is Sick: A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who Is Very Ill."
Breyer's book breaks down what parents need to know when their child is starting treatment or transitioning to survivorship, or if a child's treatment unfortunately does not work. Along the way, she offers strategies families can use to cope with the emotional toll of having a sick loved one and online resources to limit the logistical and financial challenges.
"When Your Child Is Sick" shares personal stories from a few of the families Breyer encountered throughout her career, as well as poems, essays and drawings created by former patients and their siblings.
CNN recently spoke to Breyer -- whose husband, Stephen, is a US Supreme Court justice -- from her home in Washington about her book. The following is an edited transcript.
CNN: How would you describe "When Your Child Is Sick"?
Breyer: It's a book for parents who have a sick child -- and a pretty sick child. (This is) the group that I worked with, children with cancer and their families, for many years. And I wanted the book to be for parents who were going through this awful situation. I wanted the book to be easy for parents to use, and so I wanted them to pick and choose what they read in terms of whether their child was on treatment, whether their child got through the treatment and was in a different stage, and the sort of getting on with their life. And then the final section is for the few unlucky parents whose child is not cured by the treatment they received and is going to slowly, awkwardly die. I don't think many parents who are not in that situation will read that section.
I suppose it's trying to reflect what I learned over many years of working with children and parents, and the wonderful families who I've learned so much from over the years and wanting to pass some of that on to families in the future, as well as to honor the families whom I've worked with.
CNN: You spend some time at the beginning of the book explaining all the different members in a child's treatment team and questions to bring up with them. How do parents typically feel walking into a situation like that?
Breyer: My thought is, usually, they would feel very overwhelmed and scared because it is new, and quite often, if a child is brought into an emergency room, sometimes -- obviously if it's from an accident or something, they do know why they're there -- but it may be from an unexplained symptom. And so the first week or so may be spent trying to figure out what's going on with the child, and that is particularly scary, because you just don't know what's happening for the poor parent.
CNN: Your book is "a guide to navigating the practical and emotional challenges of caring for a child who is very ill." What are some of those challenges?
Breyer: A practical challenge is very often how expensive this is, that having a child in the hospital, as well as having a big emotional toll, has a big financial toll. The parent will miss work, has to figure out how his or her other children are taken care of, have to do co-payments. It's very expensive.
You have to figure out how to get help for that. It becomes sometimes quite a major issue. Other challenges are how to negotiate a different world. The medical world is a different world. A parent is used to being in charge in their own home. When they come into a hospital, they sort of move into the way that the hospital does things, and that may or not coincide well with how they do things. In addition to the fear of dealing with a sick child and not knowing what the reason for it is.
They're also trying to deal with what's happening with their other children. If they're having to focus their attention on the child who's ill in the hospital, they're probably worrying about their other children, and their other children are certainly worrying about them. The role of siblings is a very difficult one in this situation. And often, not surprisingly, most understandably, because the sick child is the parents' priority at that moment. The other children feel confused, ignored, and it's difficult for them to figure out what's happening.
CNN: Like you mention in the book, adolescence is already a time of major upheaval. How should parents handle managing a teen with a chronic illness versus a younger child?
Breyer: All of the things that are normally happening in adolescence are sort of going backwards for a while. I mean, normally greater independence, greater reliance and spending time with friends, less with parents -- all of that is reversed.
When a teenager becomes sick, it's very, very difficult. It's difficult for both sides because, of course, the parents feel more protective of the adolescent who's suddenly become sick, and the adolescent needs to rely more on his parents physically and emotionally, as well.
Interestingly enough, there are some friends who probably in adolescence will find are much more able to deal with them being sick than others. Some may be scared by it, and some may, in a way, come out of the woodwork and be very comfortable being helpful and available and filling in somebody who isn't there all the time.
It's how to keep some of the things going that they were relying on but accepting that, perhaps, for a time anyway, they need to go back to being more reliant on their parents.
CNN: What are some of the different ways families can handle the stress and fear that come with having a relative with a chronic illness?
Breyer: In a way, the closer they are to it, the easier it may be because they see each day. Say it's a parent and their child, (the parent sees) what the child or the adolescent is capable of doing and what they cannot do and what at the moment they seem to be upset by, what they can tolerate and what they can't.
Let's go next to brothers and sisters. If they can feel involved in what's going on, and that means they can stay in contact with their brother or sister in the hospital, and the internet, which may be challenging to some of us, can be very helpful in that regard. And it makes it very easy to Skype or to have contact. It may be difficult for them to understand that sometimes their brother doesn't feel like talking or doesn't feel like being in contact. And there, maybe the parents need to be the intermediaries who explain that sometimes the child who's sick won't feel like talking or won't feel like being in contact. But that's nothing to do with them.
Further away, take grandparents who maybe don't live in the same city but who are frantic about what's going on. ... I do list in the book -- there are resources that are ways to organize giving meals, ways to organize getting information out. That is a root to which the widened network can be told what would be needed at this moment and what's likely to be helpful.
CNN: How do families adjust to life after a successful treatment after spending so much time in a hospital?
Breyer: It completely varies. It depends: What are the ongoing consequences of whatever the condition was? To what extent does it still have a daily impact on the functioning of a particular child and therefore indirectly on the functioning of the family? It depends how it's incorporated into the family's life. It depends on the outside circumstances that the family is facing. Are other stresses going on in their lives? Do they have a lot of support? Do they have adequate resources? As well also on the individual characters of the child and the parent. Some people are pessimists; some people are optimists. Some people are prone to anxiety; others are not.
I think one of the things I try to do in this book is try to be clear that there are not either cookie-cutter solutions or cookie-cutter outcomes because it so much depends on variables that, some of which are in our control, and others of which are not.
I think many families go back to some extent -- with those limitations -- if other things are going reasonably OK, including the child's condition, then everything goes back relatively to normal. But for most families, it's made a pretty big impact on them and may well continue to. Different things may trigger a memory or a fear about it, but obviously, the chance that things will go back to being more normal and the siblings who may have been saintlike during the time that the child has actually been ill maybe suddenly realize they're not quite such saints and maybe they have a little more space to create a little more trouble. The family goes on and slowly reacts to what they've been through in different forms and continues. Fingers crossed that things will go on remaining stable.
CNN: Like you say in your book, there are many ways to grieve. How do you recommend parents and families grieve the loss of a child if they do it differently?
Breyer: I do try to stay away from recommendations. But if I would have one hope for parents who have very different styles of grieving, it's that they're able to recognize that that is what's going on and that they don't blame the other for the way that they are behaving. It's not a recommendation, but it is a hope.
Or that somebody might point that out to them. What I would hope does not happen is that one parent takes out on the other parent the fact that they are grieving and behaving in a very different way from them. It doesn't mean that they're not sad, and it doesn't mean that they're not devastated. It just means that they are dealing with this in a different way. So I suppose if I could get a message across, that's the one I would hope to get across: Not that any one style is right or wrong, because I don't think that's true. But it's just that there are terribly different ways of reacting to something as awful as this.
CNN: What is the biggest takeaway you want parents and loved ones to get from your book?
Breyer: I hope that it would allow parents to have a greater appreciation for differences in style, of themselves, of their particular children, and maybe particularly if the styles are different. So I would hope that also they can get the idea that there may be things that they can do themselves or get other people to do to help their child if their child seems to be getting very depressed or anxious. And there are lots of ways that the child can be helped.
Also, I suppose the other thing is that I would like them to get the idea that they need to look after themselves as well, because if they're not in good shape, it's going to be awfully difficult for them to help their child. Put on your own oxygen mask first before helping anybody else. I suppose that's one of the hopes, which is to get them to focus on themselves a little bit and they're not doing that for a selfish reason, they're doing it because that's the way they're going to be able to best help their child.