A stem cell transplant can offer the chance for an effective treatment to some children who have a life-threatening disease. We will work to develop a unique plan for your child.

A transplant is a long and intense process that will affect the entire family. Learning what to expect can help you, your child and your family cope with the challenges ahead.

Pediatric Preparation Checklist:  Getting Ready For Transplant

This checklist is a guide to help you prepare for your child’s BMT and your stay at or near the transplant center. Some of the suggestions may not apply to your circumstances, and others will help you think about preparations not listed. Please contact your BMT nurse coordinator, social worker, chaplain, child family life specialist, or patient financial representative if you have questions or need assistance.

Your Child as a BMT Patient

• Talk honestly with your child about the trip to the blood and marrow transplant center and explain, in words that your child will understand, why you are making the trip. You may use books or other visuals to help tell the story.
• Talk with your child about the plan. You may include details of how you will travel, who will come along, and what will happen with siblings and pets who will be staying at home.
• Talk with your child about what will happen when you arrive at the transplant center. Use words and concepts that children can understand.You might include information about where you will be living, where he or she will receive medical care, and what your schedule will be like.
• Reassure your child that Mom, Dad, or another identifiable caregiver will be with and take care of him or her for the entire stay.
• If you want help talking with your child, ask a social worker or child family life specialist at your local hospital.
• Help your child to make a list of things he or she would like to take along on the trip.

As Parents, Preparing Yourself is Important to Your Child’s Unique Plan

• Make necessary arrangements with your employer. Utilize paid or unpaid leave of absence. Speak with your supervisor and human resources department about the Family Medical Leave Act.
• You might explore the possibility of maintaining some level of paid work via telephone, facsimile, and computer.
• Arrange how your home or apartment will be looked after while you are away.
• Consider how bills will be paid in your absence.
• Consider having your mail forwarded to your address near the transplant center, or have your mail evaluated and held at home.
• Discuss with your spouse, partner, or significant other your own needs and concerns.
• Begin to think about ways you can take care of yourself so that you will be better able to care for your child.
• Complete routine physical and dental appointments that are due in the near future.
• Refill necessary prescriptions.Arrange to have prescriptions refilled away from home if needed.
• If you are under a physician’s or therapist’s care, discuss the care plan that you will follow while away. Arrange, if necessary, for medical or psychological care away from home.

Concerns of Siblings

• Talk with other children about what will happen within the family while their brother or sister is going through a BMT. It is important to be honest, using words and concepts that your children can understand.
• Reassure children that you love them and that you will make plans for all family members so everyone will be taken care of. If children are staying at home, talk with them about who will be taking care of them.
• Discuss if there will be planned visits to the transplant center.
• If other children are coming along, talk with them about who will take care of them. Prepare siblings for the fact that parents may be taking turns caring for them along with caring for the patient.

Donor Sibling

• If a sibling is the donor, talk with the child honestly about his or her role as a donor, using words that he or she can understand.
• Explain what the schedule will be like, who will be with the child, and how he or she will be cared for.
• If the child is curious, inform him or her that the stem cells that are harvested from his or her body will replenish themselves.
• Talk about how his or her marrow or stem cells will help the brother or sister.You may want to explain the extent of his or her involvement in the donation and transplant process, as well as what will happen to the patient during recovery.
• If you want help talking with your child, ask your social worker or child family life specialist at your local hospital.

School

• Talk with your child’s teacher(s) and principal about the transplant and how you can keep your child connected with the school, both academically and socially.
• Bring your child’s schoolbooks and assignments along.
• Bring teacher and school contact information along.
• Depending on your circumstances, you may be able to enroll the patient and siblings in school programs near the transplant center. School enrollment may be available at the hospital, Ronald McDonald House, or in the community.

Faith / Spirituality

• If you have a faith community or place of worship, consider telling your faith leader and community where you will be. Perhaps establish a plan of communication (e-mail, cards, visits, telephone tree updates, etc.).
• Before coming to the transplant center, if you desire, ask your faith leader and community to offer special prayers, healing and anointing services, and other healing rituals for your child and family.
• Provide the time and opportunity to talk with your child and family about what each of you believes. Consider talking about what gives you comfort and strength as you and your family prepare for your child’s transplant.
• You might consider bringing along sacred texts, prayers, prayer books, faith symbols (such as a rosary, prayer rug, cross, or Star of David), devotional and inspirational literature, music (CDs and tapes), faith-related videos, or other resources you may find helpful during the medical treatment.

Accommodations

• Make arrangements early for your housing and travel needs.

Financial

• Check with your insurance case manager to learn if there is coverage for housing, travel, and medical expenses related to your child’s transplant.
• If you receive medical assistance, talk with your caseworker about financial assistance for travel, housing, and meals for the patient and caregiver.
• You may consider participating in fundraising activities for uncovered expenses related to your child’s transplant. If you have applied for medical assistance or Supplemental Security Income (SSI), talk to your caseworker or social worker about how to protect any money raised so that it does not affect your child’s eligibility for assistance.

Family and Friends

• Consider having a family photograph taken. Bring a copy along and leave a copy with any family members (such as siblings) remaining at home.
• Participate in a send-off gathering with family and friends.
• If friends and family want to know how they can help or what they can send, consider long-distance calling cards, snacks, meal certificates, notes of caring and encouragement, videos of family and friends, and items that you and your child might enjoy.

Communication

• Plan for how you will stay in touch with family members and friends back home.
• Bring long-distance calling cards (cell phones are not allowed to be used in the hospital rooms or units).
• Bring telephone numbers, addresses, and e-mail addresses.
• Consider using videotapes, e-mail, or audiotapes to maintain contact with separated siblings and parents.

Packing List

• Make your own packing list as you think of things you want to bring.
• Bring items that will give comfort to your child and you.
• Bring loose clothing for your child, including shirts and pajamas that button in the front. This will provide easy access to his or her central venous catheter.
• Consider bringing some photos that are meaningful and uplifting.
• Refer to the packing list in the BMT information packet provided by your social worker.

Preparing Emotionally

By the time you have to make a decision about your child’s BMT, you’ve already had to cope with the knowledge that your child may have a life-threatening disease. Your child and family may have been through times of encouraging news and frightening news.

Coping with a life-threatening disease and the aggressive treatments needed to fight it requires a great deal of emotional strength. It’s also an emotional experience for your child’s caregivers and family members. It is normal for feelings to fluctuate. Sometimes you child and you will feel able to cope, and other times you may feel numb or overwhelmed.

It’s normal to feel anger, fear, anxiety, and depression. You might also feel hopeful and optimistic. It is important to not let negative feelings get in the way of your child’s health and life. Having a positive attitude can help your child and you get through the process.

The following suggestions may be helpful in preparing emotionally for the transplant.

Choosing a Caregiver

A caregiver for your child is a parent, family member or friend who can help your child for the majority of their BMT treatment and recovery. Caregivers can rotate, but a parent or adult is needed to help your child throughout their posttransplant care. As difficult as it may seem to for a parent or other adult to fill this role, the caregiver is a key component of a full and safe recovery. It’s important to start deciding who can fill this role prior to coming to the hospital to begin the "workup" evaluation.

We encourage the caregiver to be present during your child’s workup process, as the medications given during a bone marrow biopsy may cause drowsiness. It is also necessary for a caregiver to be available when your child’s central venous catheter is placed; this is often an outpatient procedure requiring anesthesia. In both cases, your child’s caregiver will need to escort your child home. A caregiver sometimes helps with medical tasks, such as giving medication and identifying symptoms to report to the doctor. Some treatments, such as IV medication and nutritional support, which cannot be completed during the BMT clinic hours, are given at home. Initially, a home care nurse may administer these treatments, though often caregivers or parents are trained to do this. The caregiver’s primary function, however, is to support your child and help them if they become sick.

Other tasks for caregivers may include: driving or accompanying your child to the clinic, preparing meals, overseeing medications, and calling for emergency assistance if your child is injured, becomes ill, or develops a fever.

Having a caregiver present is an essential safety precaution, as your child may have an increased risk of bleeding and infection depending on their blood counts. A caregiver also provides needed emotional support throughout treatment and recovery.

Your choice of your child’s caregivers will depend in part on who is available. The parent, different adult friends or relatives may have different talents and skills that will be helpful. One relative might be available for emotional support, for example, while a friend who is a good organizer might assist with medical care, finances, or transportation. It’s not always easy to be a caregiver, but it is important to your child’s care and health.

Being a Caregiver

A caregiver plays a crucial role in helping your child through BMT and recovery. As difficult as it sometimes seems, this role is a key component of a full and safe recovery. It is important to start deciding who can fill this role prior to your child’s workup evaluation.

Being a caregiver for a child who’s having a BMT can be a life-changing event. If you are a BMT caregiver, you will be helping someone you care about, by offering a kind of help and giving that may lead to personal growth and added closeness with the patient. You will need to learn to perform various physical tasks. You also will need to take care of yourself emotionally and physically while trying to support the child whose emotions can fluctuate a great deal after this major procedure.

Prepare yourself in advance for the caregiver role. If your child is the patient, it is natural for you to become the caregiver, and it is probably something you want to do. But you should be honest with yourself about your strengths and weaknesses and look for help when you need it. You will be called on to provide emotional support, practical tasks, and simple medical procedures for the patient. Get help with these things in whatever way best supports your efforts.

Caregiving requires a significant time commitment. The patient needs help at many different times, for everything from driving to appointments to preparing meals. As your child recovers the time commitment should ease, but for many weeks the caregiver may need to devote most of the day to the patient’s needs. A caregiver’s tasks include:

• Providing emotional support and encouragement
• Going with the patient to appointments
• Communicating with transplant team members and gathering information
• Assisting with the scheduled oral and intravenous medications after hospital discharge
• Keeping track of the medications taken after hospital discharge
• Keeping an eye on the patient’s condition and identifying any changes or new symptoms
• Caring for the central venous catheter
• Knowing what to do in an emergency
• Calling for medical help when needed
• Communicating with other family members and friends
• Keeping a clean and comfortable home environment
• Helping to prepare or provide meals for the patient
• Providing transportation to and from the treatment center or clinic
• Helping with medical and hospital bills, insurance paperwork, and financial planning for the family

How can caregivers take care of themselves?

Being a caregiver can shift your role. Caregivers become extremely knowledgeable and attentive to the tasks that they perform for their loved ones.They are often separated from their spouses or other children during the transplant. Preparing for this will be helpful to the whole family.

Being a caregiver for your child is demanding. It can shift your primary role from that of parent to that of medical caregiver. Caregiving is a demanding job, one that can’t be done well if you’re stressed and tired. There are things you can do to take care of yourself.

• The more you know, the more comfortable you’re likely to be with the role. Take advantage of the classes and training offered by the transplant program.
• Make sure you take some time for yourself. Get away from the hospital or house once in awhile. Talk with friends. Go to a movie or take a long walk.
• Turn to other people for help when appropriate. Even if you are the main caregiver, other friends and relatives may be able to help with such things as preparing meals or providing transportation.
• Communicate openly and honestly with the patient about your needs as well as his or her needs.
• Take advantage of available resources, such as transplant program support groups, your social worker, or a chaplain or other spiritual adviser.

Emotional well-Being and Common Feelings

When a loved one has a serious disease, the focus naturally shifts to him or her. The patient needs a lot of emotional and physical support through the long treatment and recovery process. It’s easy for you—the parent—to fade into the background. Friends and other relatives call or visit the person who is ill. All of your conversations may end up being about the patient’s treatment and progress.

Sometimes you, too, need a chance to have a good laugh or cry. You need to be able to talk about what’s scaring you or making you angry. Sometimes you just need a break. It’s important for you to recognize and talk about your own feelings, but you need to turn to other people besides your loved one.

Some of the emotions you may feel are discussed below. Maybe you’ll feel all of these—or none of them. Remember that everyone reacts differently during times of stress.

Fear

You might be fearful about whether your loved one is going to live. You may fear that you don’t have the strength or courage to go through illness, treatment, and recovery.

You may simply fear the unknown. What happens next? Will you be taking care of an invalid, dealing with death, or will your family life eventually get back on track? Even if you are able to handlethe day to day challenges related to a stem cell transplant, , it can be the unpredictable nature of the experience that can increase feelings of fear.

 The saying that "we have nothing to fear but fear itself" probably seems a bit simplistic for the complicated situation you find yourself in. But fear is crippling. It tends to stop you from doing things that can improve your situation.

Getting information is one of the best ways to deal with fear. It won’t take away all your fear, but it will help you control it. If you’re worried about money, now is a good time to get the details about your savings and expenses and to talk with a financial adviser or social worker. If you’re worried about the treatment, ask the doctor questions and do your own research. Reassurance and information from others may help.

Tell your loved ones something about your fears, but be cautious about sharing too much. Most caregivers have a lot of fears. Knowing that you are not alone with your feelings may be important to you—and may actually help—but your loved ones may not be in a good position to support you. Find a support group or other outlet where you can talk about your fears and hear how others have faced theirs.

Resentment

You may have some feelings of resentment toward your loved one, and yet wonder how anyone could resent someone who is ill. You may not want to talk about this feeling of resentment, fearing that people will think it is selfish, insensitive, or mean to resent a loved one who is ill and may die.

But resentment in this situation is not uncommon. You may resent the time and energy you are expected to give.You might even resent the attention that the patient gets, while you are exhausted. Your life has had many difficult changes since finding out about the disease.You may resent your loved one for these unwelcome changes. It may be that you are resenting fate, your higher power, or the healthy people you know.You may want to shout about how unfair it all is. Why is your loved one ill and not someone else?

You may be experiencing these feelings and have a difficult time expressing them to others. Remember that resentment is a hard emotion to conceal or bury. If you feel it, at some point you are likely to express it—directly or indirectly. If you’ve bottled up this feeling for a while, it can come pouring out in an ugly way that may be hurtful to others. A better way to cope with your feelings of resentment (or any difficult feeling) is to talk with a trusted friend, asocial worker, a counselor, or others who have been through a similar experience. Your hospital and clinic have support groups and can refer you to counselors or therapists who can help you.

Abandonment

Although you may be spending all of your time—or what seems like all of your time—together with your loved one, you can still feel as if you’ve been abandoned.

Although your loved one may need a lot of your time, you can take a few hours here and there to be with other friends or family members. Surround yourself with people who care about you. Take breaks from caregiving and ask others to occasionally relieve you. You might, for example, go to lunch with a friend, read a book or newspaper, watch a video, spend time with family, or simply take a walk.

Try not to abandon your loved one emotionally because you feel abandoned. Strive to be close. Do this in positive ways (finding things to laugh about together or reading out loud together, for example). Talk about the evening news or how proud you are of your child. Hold hands and hug and use loving words. Your life together is more than this disease and recovery.

Sadness

It is very natural to feel sad when someone close to you is ill. You see one of the most important people in your world going through a rough time. You may be facing the possible loss of your child. There are new emotional and physical demands on you, and it may feel like you are alone.

Things are not normal, and you probably miss normal. You want to pull the blankets over your head and go to sleep. You want to cry. If you need to cry, go ahead and cry. Crying is a healthy release that can make you feel better. If you want to sleep, sleep late when you can. Spend time with friends and family who will understand, comfort you, and be with you in your sadness.

Do try to include some things in your life that make you happy. Go to funny movies (laughter, too, can make you feel better), take walks in pretty places, spend time with friends who are interesting and lively, or read bedtime stories to your children or to someone else’s children.

Depression

Sadness and depression are normal, but depression goes beyond sadness. When you are depressed, you tend to feel a sense of hopelessness. You’re convinced that things will never be good again. Some signs and symptoms of depression include:

• A change in sleep habits. You sleep all the time, you wake up too early, or you can’t fall asleep.
• A change in eating patterns. You find yourself eating too much, or you don’t feel like eating at all.
• Weight loss or gain.
• Lack of energy.
• Loss of interest in things you used to enjoy.
• Feelings of worthlessness or hopelessness.
• Thoughts about suicide.

If you think you may have depression, you need to get help. Depression is a real illness and can have serious effects. People who are depressed don’t always recognize that they are depressed. If friends say you don’t seem to be yourself or ask if you are depressed, pay attention. They are giving you very important feedback. It may help for you to see a professional to determine whether you are experiencing depression. Counseling, along with medication, could be helpful in treating your depression.

Healthy Ways to Deal with Feelings

It’s important to express your feelings, but you don’t want to let them get the best of you. Consider some of the following healthy ways to express feelings.

• Learn or practice deep breathing exercises. Sit quietly for a few minutes each day and pay attention to your own breathing. Try to clear your mind of thoughts and feelings for this time. Just close your eyes, notice your breath, and be aware of yourself in this moment. This is a beginning form of meditation that may bring you some peace and help you get through each day more easily. If you find this helpful, you may want to learn more about meditation.
• Talk to yourself about how you feel—and recognize that it’s okay to have these feelings.
• Talk to other people. They can give you a reality check and provide support when you need it.
• Use what has helped you feel better in the past. If exercise is your way to let out anger, then get to the gym, go for a bike ride, or go for a walk. If pampering yourself helps you deal with sadness, then bring out the bubble bath and the scented candles, or listen to soothing music.
• Look to your spirituality. People who have a regular place of worship can find support in going to services. If you are away from home, you may want to find a local place of worship. If your spirituality is more personal and individual, find ways to explore it on your own.
• Read inspirational books. A book of meditations or prayer or books about others who have struggled with a loved one’s illness can affirm that you are not alone.
• Work with your social worker to develop your own unique plan for coping with the changes and feelings related to the stem cell transplant experience.