SIBLINGS' CONCERNS"It was like a whirlwind, a dream. One day our child was a normal 15-year-old boy who would live to be 80. The next day we were staring at blackboard diagrams about bone marrow transplants, and hearing doctors tell us our son might die. It wasn't real. We didn't understand. All we could do was hug eachother and cry." -Parents of BMT patient
Each year more than 2,000 children in the U.S. ranging in age from two months to 21 years undergo a BMT. They are battling diseases such as leukemia, aplastic anemia, immune deficiency disorders, inborn errors of metabolism and solid tumor cancers such a neuroblastoma. Depending on the type and stage of the disease, prior treatment, compatibility of donor marrow, and the child's general health, the odds of a successful BMT may be as high as 90 percent or less than 10 percent.
While pediatric BMTs are similar in many respects to adult BMTs, children undergoing BMTs and their parents have some concerns and needs that differ from adult BMT patients. This chapter will examine those issues, and share insights from parents, doctors, nurses, psychologists, social workers, and children about the experience.
Choosing whether or not to proceed with a bone marrow transplant is a difficult decision for children and parents alike. The odds of success must be weighed against the certainty that the BMT will be a lengthy, rigorous procedure. There is often no clear-cut "right" choice and parents and children can be frustrated at having to choose between equally unpleasant options.
Parents, particularly if their children are under age 14, have the authority and responsibility to make the final decision in most states.
Nonetheless, they know it is the child who must live with the consequence of their decision and this can create internal turmoil. "I knew it was a do or die situation," explained the mother of a 5-year-old boy with aplastic anemia, "but I kept asking myself, "Do I really have the right to decide his life? I want to keep him with me as long as possible. Am I deciding what's best for me or for him?"'
Most BMT centers and parents of former BMT patients strongly recommend involving the child in the decision-making process as much as possible. Securing the child's cooperation and trust during the BMT is imperative, and starts with a candid, caring explanation of the disease and the BMT procedure.
Involving siblings in the early discussions about the child's disease and treatment also helps unite the family and alleviate resentment other children might feel toward the sick child and the attention he or she is receiving. "We decided our 12-year- old son and his brother would be told honestly about what was happening, and both would participate in decision making as much as their age and maturity allowed," said one mother whose son had a BMT for Hodgkin's disease. "Although this placed a burden of maturity on both sons, they rose to meet it and our family drew closer, frequently drawing support from each other." Noted one psychologist, "Families who involve siblings in discussions about the child's care and treatment often have fewer problems later on with sibling jealousy or anger. Be completely honest with both the child and siblings right from the start so there are no surprises down the road and no feelings that they've been lied to."
Finding and absorbing adequate information about BMTs prior to making a final decision is not always easy. Most BMT centers will provide oral explanations of the procedure and explain the risks, potential complications, and side effects, but not all have this information available in written form. This can make it difficult for parents to reflect on the information they have been given, double check their understanding, and formulate new questions. It helps to have more than one adult present during the explanations and to keep a journal of notes.
Sometimes parents receive conflicting information from their referring physician and the BMT team about the child's chances for survival, side effects, or the urgency of a BMT. "The first conference with the BMT team was the most depressing experience of my life worse than when my daughter was diagnosed," said the mother of an infant with leukemia. "Our doctor never told us about the possible side effects. I was terrified. I just wanted to grab my child and run."
Don't be shy about asking follow-up questions of the medical team, even if it's the 90th time the question has been asked. Keep asking until you understand and feel you have enough information upon which to base a decision. It is the medical team's job to make sure all questions are answered, no matter how long or how many repetitions it takes.
Many parents find it helpful to talk to parents of other children who have been through the procedure, particularly parents of a survivor. Your physician or BMT center, Candlelighters, or the BMT Newsletter may be able to put you in contact with such parents. Keep in mind, however, that despite their similarities, no two BMT experiences or centers will be exactly alike.
Children's questions and concerns about the BMT vary according to their age. Younger children focus on immediate problems like how much it will hurt, whether they will be separated from their parents, when they can return to school, when their hair will grow back, whether or not they'll vomit a lot, and whether they will have to have chemotherapy after the BMT. After acquiring a basic understanding of the procedure, younger children tend to rely on their parents to decide what's best.
Teens, on the other hand, take a much more active role in the decision-making process and, by law, must give their consent to the procedure in most states. They tend to be very concerned about their self image and worry about losing their hair, gaining weight from steroids, etc. They're concerned about fitting in with their peers once the BMT is over and returning to a normal school life.
The possibility of infertility post-transplant can be distressing for an adolescent. Sexual identity and activity are important to teens and they may erroneously believe that infertility means they'll be unable to have an active sex life. The notion of infertility can be particularly distressing if discussions of "family" or "parenting" have always been narrowed to include only a traditional, biological family, as opposed to a family with adoptive children or children conceived with the help of medically assisted reproduction techniques. While sperm banking for young males is a possibility, teens are sometimes too embarrassed to discuss or attempt this option.
Parents typically focus on longer term questions such as the risk of relapse, problems of non-engraftment, graft-versus-host disease, and how long after transplant the child will remain susceptible to infection. Parents also are usually distressed over the prospect of post-transplant infertility. Some are disappointed that they may not have grandchildren, ignoring the possibility that the child might build a family through adoption or medically assisted reproduction if infertility does occur. Parents of children who are very young at the time of the BMT worry about how best to prepare their child for a discussion of this problem in the future, when to raise the issue, what to say, and what reaction to expect.
"Discussing infertility with very young children who are still in the process of distinguishing between boys and girls and establishing their own gender can hurt more than help, especially if the issue is being raised in the midst of a medical crisis like a BMT," stated one psychologist. "The age of 9 or 10 is a good time to begin talking about it. It's helpful to normalize the situation, to let them know that many adults (one in six) are infertile and to distinguish between child-bearing and child-rearing. As they reach puberty, it will become more of an issue and distinguishing between infertility and having a normal sex life will be important. This is not an issue that can be dealt with in one marathon session and then ignored. Children will have questions and feelings about it for a long time and should be encouraged to talk about them."
Occasionally there is disagreement between parents and children about whether or not to proceed with a BMT. These cases often involve a child for whom a BMT offers only a small chance of long term survival and/or who is distressed at the prospect of infertility. Resolving these conflicts can be difficult but is essential. "Listen to each other carfully," advised one BMT nurse coordinator "and respect the child's concerns as well as your own."
Disagreements between parents about the wisdom of proceeding with a BMT are also not unusual. "At first I was totally against it because the chance of success seemed so low," said one infant's mother. "Even the doctors had conflicting opinions. I was really torn. I finally decided that if we found a matching bone marrow donor, the BMT was meant to be. We did, and my daughter is now doing fine."
"We had just gotten our son back to the point where he seemed happy and healthy and now they were proposing a BMT," said another mother. "I kept thinking, 'Why take him back to ground zero? Why can't we leave him alone?"
Once the decision to proceed with the BMT has been made, numerous preparations begin. The child who will undergo the procedure, the siblings, parents and members of the extended family must all be prepared for the physically and emotionally difficult times that lie ahead. Parents, particularly those with other children, may feel pulled in several directions, trying to help the sick child, their spouse, and their other children cope with the experience. Other family members and friends can best help by listening to parents about what they want and need during this period of time, responding to those requests, and respecting the parents' right to make decisions even if they themselves would decide things differently.
For the child undergoing the BMT, this will usually be the first life experience with such a rigorous, challenging, situation and the intense emotions it involves. Younger children may fear that they themselves are to blame for the disease and treatment, that they were somehow naughty and are being punished. Young siblings may also fear that they caused the problem, e.g.. they got angry with the sick child and said "I wish you'd get sick and die" and now it is coming to pass.
It is important that children of all ages be encouraged to discuss their feelings openly so their concerns can be addressed. Find out what your child is thinking. Don't assume that if he or she doesn't talk about the illness or BMT, there's no problem. Sometimes concerns and anxieties will be expressed through behavioral changes rather than verbally, e.g.. nightmares, belligerence, depression, etc. It is important for parents to help children understand that they did not cause the disease and that the treatment is not a punishment but the best way to try and make the disease go away. Parents should let their children know that they understand they are unhappy, frightened and confused and that theparents share their unhappiness, but that together they will work hard to help the child get well again.
Sometimes children will more openly discuss their feelings with someone other than their parents. This is particularly true of pre-adolescents and adolescents who are fearful of hurting their parents' feelings or causing them distress. Adolescents who are coping with typical teen desires for independence may be especially reluctant to "let down their guard" in the presence of parents. While parents may resent or be hurt by this fact, it is important that children be able to discuss their feelings when they are ready to do so with whomever they feel most comfortable. Parents can seek the help of nurses, psychologists or other counselors to encourage the child to open up if the child will not do so intheir presence.
Children about to undergo a BMT should be thoroughly familiar with the hospital, the people with whom they will come in contact, and the equipment that will be used during the procedure. Children should be shown unfamiliar devices like the catheters and IV poles and given simple, clear explanations about what these devices do, why they are needed, and what it will feel like when they are used. Allowing children to handle the hospital equipment and try out the procedures on dolls before they enter the hospital often helps them get comfortable with the equipment, allows them to ask questions, and reduces their fear when it is eventually used during treatment.
SIBLINGS' CONCERNSBringing siblings to the hospital and showing them where their brother or sister will spend the next several weeks is a good idea. They will feel less left out as preparations for the BMT begin and will have a better sense of where their sibling will be and what will be done to them.
Often siblings must be left in the care of friends or relatives while the child is in the hospital. This may involve removing the siblings from their home and normal routines. Young children may view this forced separation from their parents as a punishment. It is important that siblings know that the parent doesn't want this separation, that it will be temporary, and why it is not possible for the child to stay with the parent. Creating a "home away from home" environment with routines of play, study, eating, etc. as similar to the child's normal home routine as possible helps. Setting up a plan of routine contact between the parents and siblings will lessen the feeling that they are being ignored or that they aren't loved as much as the sick child. "Every day I would call my daughter and write her a note," said one parent whose daughter stayed with grandparents during her brother's BMT. "When I wrote, I would tell her what was happening with her brother, but when I called, I made sure we talked about her."
If siblings stay with their parents during the hospitalization, the professional staff can be helpful in talking with them and addressing their concerns. Some centers have special programs designed to help siblings through the experience.
Often so much time and energy is focused on the child to be transplanted that the needs and concerns of a sibling who is to be a marrow donor are underestimated. For these children, the medical procedure they're about to undergo is no less daunting or frightening than that awaiting their brother or sister. They too need careful preparation to make sure their questions and concerns are addressed and they need to feel that their parents are just as concerned about them as they are about the child about to receive the BMT. Members of the extended family and friends should also be made aware of the needs of the donor as well as the child who is ill. "Friends kept calling and asking how my son was doing," said one parent. "I told them he was fine, it was my daughter the donor who was hurting and needed their attention right now."
Parents, relatives, friends, or members of the BMT team sometimes try to secure a sibling donor's cooperation or attempt to bolster his ego by stressing that his marrow will save the sick child's life. Rather than make the donor feel important, however, this kind of talk can impose a terrible sense of personal responsibility on the child for the success or failure of the BMT, a situation that is totally out of his control. If the transplanted child's blood counts do not progress well, if complications arise, or if the child eventually dies, the sibling may suffer tremendous guilt and depression. Even if explicit statements to this effect are not made to a child donor, these feelings of responsibility may nonetheless exist and should be addressed.
Once preparations for the BMT have been finalized, families can feel "at sea." Being anxious about the BMT, re- thinking the wisdom of proceeding with the transplant, and continually working through their own fears as well as their children's concerns during this waiting period can be very stressful. Providing parents and children an opportunity to talk about their concerns, or engaging them in a special outing or event to help distract their attention from the problem for a few hours is a helpful service that friends and extended family members can give.
It is not unusual for stresses that previously existed in a home or marriage to be heightened during this time. Plans for a separation or divorce may get put on hold as a result of the planned BMT, with tensions between marital partners increasing. Substance abuse problems may become acute as a result of the added stress. Don't be embarrassed to seek help for these problems-you won't be the first person to do so. In general, it is best to make as few changes as possible in the home routine and keep lines of communication open during this difficult time.
Although a BMT is anything but routine, it is important to maintain as much of the child's normal home routine as possible while in the hospital. Bringing along favorite clothes, pictures, toys, etc. helps maintain a sense of normalcy. Arranging for calls, letters and/or visits from the child's classmates, favorite teacher, church members, or from a hometown doctor with whom the child feels comfortable can also help. Some families make videos of families and friends that the child can view while in the hospital.
Despite everyone's best efforts, the hospitalization will be a very stressful time for child and parents alike. Children will be inundated with tests, medications and daily medical procedures. Children of all ages, and teens in particular, feel overwhelmed by all the rules and "bosses," and can become angry over the loss of personal control. This manifests itself in several ways.
Some become angry or belligerent, refusing to cooperate with parents and/or the medical staff. Others will cry for no apparent reason and be unable to explain what is making them sad. A child may refuse to eat or play. Still others may become depressed, listless or exhibit regressive or babyish behavior e.g.. they'll be incapable of performing tasks they were previously able to do on their own. Parents usually bear the brunt of the behavioral changes.
"Children spend a whole lot of time and energy growing up, seizing control over their life, and becoming more independent," explained one psychologist. "When they undergo a BMT, they lose that independence and control, and that can make them angry or depressed."
"Children don't feel the same urgency about routine medical procedures as parents do," noted a BMT nurse. "It's important to talk with children and let them know that you know it's hard, and to let them know that feeling angry is normal and OK."
"I never said to my son 'don't cry,"' said one mother. "I encouraged him to talk about what was bothering him and to let it all out. If he really rebelled against doing something like mouth care, I wouldn't insist it be done that moment. We'd talk about it and usually it would get done without a fight five minutes later. Sometimes I'd suggest we do it a few minutes before the nurse came in so that he could feel like it was his decision and not her order that made it happen. He liked that feeling of control."
"Children are as concerned about protecting their body and having control over their personal life as adults," explained a child therapist. "Treat them as persons. Don't violate their bodies without asking permission. Give them the opportunity to say 'no' or to make choices regarding their care or daily activities whenever it's possible for you to honor their decision."
Setting up and sticking to a daily routine in the hospital is important for children. Ideally, the routine should include some "safe" time for the child each day in which no unpleasant tests, medications, or staff intervention occurs. At one center, a child's parents created a "safe area" for the child in the room by bringing in a free-standing tent. When the child needed time alone, she would go into the tent to play.
Preparing children immediately in advance of each new medication or medical procedure is very important. Children need to know what will be done, what the equipment will look like, and how they will feel during the procedure. Often a child's imagination can conjure up a more terrifying picture of the procedure than is actually the case.
Younger children can misunderstand language used to describe the procedure and can become unnecessarily frightened. They may imagine a "shot" for example to be a gunshot rather than a needle pricking their arm. Children should be told about the medication or procedure far enough in advance to allow them to work through questions, but not so far in advance that they will have time to brood about it.
Advance explanation is even required before the administration of drugs designed to ease pain or sedate the child. "The first time my child was given Demerol (a pain medication) he became almost violent He wasn't prepared for the feeling of grogginess and it frightened him. After that, I always made sure he knew in advance how the drugs would make him feel," reported one mother.
Boredom in the hospital can be a big issue for children. Bringing favorite toys, games, etc. from home helps to ease the boredom. Planning diversions and activities for teens is especially important. "My son was 15-years-old in a children's hospital. Although they had lots of activities planned, they were usually geared toward younger kids, not teens," noted one parent.
The time in the hospital is difficult for parents as well. It's hard to watch your child undergo difficult medical procedures, particularly when you have so little control over her care. "They kept saying that 'being there' for my child was important," said one mother,"but it never felt like I was doing enough." Said another, "I worried constantly because my child was too little to talk to us and tell us if he hurt."
Parents can be important advocates for their children, particularly when it comes to securing pain relief or minimizing the discomfort associated with medical procedures. Some BMT centers, for example, usually administer sedatives or other pain control medications to children in advance of bone marrow aspirates (a medical procedure that can be very uncomfortable) while others do not. Don't hesitate to ask for pain medication if your child has difficulty with a procedure and don't feel intimidated if the medical staff initially resists your request without providing a good reason.
It is important for parents to pace themselves during this time so that they don't become exhausted or ill. Taking a few minutes or hours off while social workers or visitors spend time with the child can be helpful. Some parents find that spending the night away from the hospital enables them to get a good night's rest and better cope with the next day's stresses. For other parents, remaining with the child overnight is less stressful and preferable.
Children are very perceptive about their parents' feelings, and can be frightened when they detect sadness or stress in their parents. Some children may feel guilty, thinking they caused their parents' sadness, and a desire to protect their parents can be a stumbling block to speaking frankly about their own concerns. Acknowledging that the hospitalization is scary for everyone involved and that everyone will work through the experience is important.
"Every day my son would say I love you, thank you for being here with me. It makes it easier when I'm not feeling good,"' said the mother of a fifth-grader. "They know it's just as hard for you as it is for them."
Going home the day that everyone waits for - can be a bittersweet experience. Although the hospitalization has ended, the recovery period is far from over. Medications must be administered several times daily, central lines (the catheter or flexible tubing through which blood samples are drawn and medications and transfusions are administered) must be cleaned, and several visits per week must be made to the outpatient clinic to monitor the child's progress. Parents will be "on pins and needles" watching for signs of infection or other complications. It is not uncommon for problems to develop that require the child to be readmitted to the hospital for a short time and this can be alarming for parents and children alike.
"Picking up the pieces is not easy," said one mother. "For months I felt like I was on autopilot. I forgot how to sleep and constantly felt like I was dragging. There didn't seem to be enough hours in the day or energy in me to take care of everyone's needs. After ten months I wondered 'when will this be over?"'
Frequently, friends and extended family fail to understand that the trauma continues long after a child returns home. "They think that once you walk out the door of the hospital, everything is behind you, that you should pick up life where you left off. It just doesn't work that way," said several parents. "It would really drive me crazy when people would say 'you must feel so lucky' or 'you must be so grateful' when I was feeling anything but lucky," said another parent. "While I was grateful to have witnessed a miracle, I was still really angry that our family had to go through all this. I kept wondering 'why us? What did we do to deserve this?"
The reunion of the siblings with the parent who spent time at the hospital with the BMT child is not always a smooth one. "At first my 3- year-old refused to talk to me," said one mother. Said another, "My daughter was left in my husband's care at home during my son's BMT.
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She talked with my husband and treated him like her parent, but closed up to me. That hurt a lot. We found a therapist who helped us understand her fears and resentments, and work through them."
Siblings often feel resentful or jealous of the extra attention the child undergoing the BMT continues to receive after returning home. They may express a desire to be sick so their mother will pay more attention to them. They can resent the fact that different rules apply to them than to the BMT child. Some parents have found that involving the sibling in the routine caregiving can make them feel needed and important. Setting aside time for the parent and sibling to do something special together also helps.
"I told visitors who planned to bring my son a gift to bring one for his sister as well, or bring nothing at all," said a parent. "It was hard for her to see her brother get all the attention. She felt shut out."
The child undergoing a BMT often senses the sadness siblings feel over the lack of attention shown them. Said one little boy to his sister, "I'm sorry I'm so lazy right now and mom's doing everything for me. As soon as I feel better you can have mommy for awhile."
Behavioral problems with the child undergoing a BMT are not uncommon after transplant. "Parents get set up to be in an awkward position when they return home," said one nurse. "While in the hospital, the child will usually get lots of cards, gifts, balloons and attention and may expect it to continue at home. If the level of attention diminishes, the child may become angry and resentful."
Both the child undergoing a BMT and siblings may become very anxious over symptoms of a common cold or other minor discomforts after the BMT. Said one mother, "I went to my son's room one night when I heard him sniffling. 'This feels so familiar,' he said. 'I always used to get sick at night and you'd have to take me to the hospital.' When I assured him that he would be OK he said, 'That sounds familiar too."'
"Our daughter was afraid to get sick after her brother's BMT," said another parent. "When she got the flu last week it was the first time that she was the sick one rather than her brother. He hovered over her, rubbing her back, bringing her something to drink, trying to soothe her. They were both very concerned."
"Don't ignore or trivialize a sibling's complaints of illness," advised a BMT nurse. "Show them you are as concerned about their well-being as you are about the BMT child. Call the doctor even if you think it is something minor. It can help put their mind at ease."
"Don't assume siblings' complaints of illness are a deliberate ploy to get attention," advised a psychologist. "Children often mimic symptoms of the illness unconsciously, and truly believe they are ill."
Certain post-transplant events that parents view as milestones can unexpectedly be very traumatic for the child. A 2-year old, for example, became very upset when his central line was removed. "We thought he'd be happy to get rid of it. Instead, he became very upset-it was like part of his body was being removed,'' said one mom.
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Returning to school is a milestone that children are often encouraged to look forward to, but it too can be a tremendous letdown. They may find their classmates are not awaiting their return with baited breath, that their friends have moved on to new interests and activities without them, or that other children are fearful of associating with a child that has been sick and may now look different. 'It helps to prepare classmates in advance for the child's return," advises a social worker. "A nurse, doctor or social worker can visit the school, explain what has happened to the child, and answer questions." Even with advance preparation, however, the child undergoing a BMT sometimes finds it difficult to fit back in.
Despite the difficulties, the BMT experience often brings families closer together. "My children still squabble a lot, but they're very concerned and protective of each other as well," said one parent." "It was rough while we went through it, but the good times have come now," said another mother. "My son made it, he's healthy, and we all appreciate what it means to be alive."
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This document was created by NYSERNet, Inc. through a grant funded by the New York State Science and Technology Foundation as part of the Breast Cancer Infomation Clearinghouse.