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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

Top Tips for Parent Caregivers During the BMT Process: Caregiving from a Mother's Perspective

by Melanie Goldish

As a parent who was instantly transformed from a typical devoted and loving, working mother to a "BMT Mom," I learned firsthand about the immense multitasking and perseverance required to manage through the emotionally and physically draining transplant journey. On its own, parenting is a formidable task. Parenting, self-care, and caregiving for a child before, during and after his transplant is a huge endeavor-one that requires more than a single individual can ever manage alone. Fortunately, many parents have blazed this trail with positive outcomes and shared their experiences so that others may benefit. In the end, this journey will hopefully leave us all with a lasting legacy of better parenting, a solid outlook, powerful perspective, and a healthy, strong family as a result of this lifesaving transplant procedure.

Everyone's situation and experience with transplant is unique-so some suggestions may be more applicable to you than others. When reviewing the following tips, use what works best for you.

1. Remember The Power of Choice
For You.
As difficult as it is, the quicker we can snap ourselves into reality of "what is"-what we're dealing with-the better we can focus our energy, resources, and creativity to decide on the best course of action for our child and family. We can't choose the fact that this "event" has happened-that our child needs a transplant; that this is "happening to us"-yet we CAN choose how to respond. This is a powerful principle to help pull you and your child through the many difficult hours, days, and treatments ahead. So give yourself permission to choose, whenever possible. Choose to talk with friends about how you're feeling. Choose to take a break to collect your thoughts alone, and enjoy a cup of coffee. Choose to join a support group or listserve online. Choose to see a therapist. Choose to focus on the positive, versus the energy-draining "victim mentality" that can be so seductive. Choose to be an involved and informed parent through the transplant process. Choose to cry if you need to-then choose to "get up and keep going." Choose to explore all available support options at work. Choose whatever works for you. This is where you do have control-in how to respond to this life-challenging event. We can each choose how to respond for ourselves in a way that will best meet our unique individual and family needs.

For Children (Patient and Siblings).
The power of choice is just as strong for our children facing transplant-and their siblings. Sometimes, the options aren't as exciting as our kids would prefer, yet having choices in a situation that feels so totally out of their control can be helpful. Whenever possible, offer choices to your children. Let them be in the "driver's seat" with clear options such as: Would you like to leave now or in 10 minutes? Which leg should get the "poke" (shot)-right or left? Do you want a chocolate malted or a strawberry sundae? Would you like to help arrange the dressing change supplies or have me do that today? While in some situations there may seem to be no options available, try to creatively offer some choices. For example, it may be an absolute that your child must take Cyclosporine medication each day. Perhaps offering your child the option of taking it with chocolate milk or root beer soda will help him be a more willing participant. Even these seemingly small choices give some semblance of "control" in a world where so much seems to happen "to" your child. Choice is the ultimate freedom. Both you and your children may benefit greatly from this approach.

2. Take a Deep Breath and Seek Support.
While many of our friends and neighbors may offer support on a one-time basis or even a few occasions, it often quickly becomes a harsh reality that most return to their own daily lives. Therefore, it becomes vital to reach out for help. And yes, that means we need to ASK. Waiting for the right offers may be.well, a long wait! While we may feel alone in this journey, with few friends or committed helpers, ongoing support can be found through many sources. Check out religious and worship centers, religious groups' Caring Community Committees, your children's school parent organizations, their teachers and classmates' families, a special task force at work, not-forprofit organizations such as the National Marrow Donor Program, Office of Patient Advocacy, National Bone Marrow Transplant Link, The Marrow Foundation, Make-AWish Foundation, Ronald McDonald House Charities, and neighborhood outreach groups. Rely on the expertise of your hospital's transplant coordinator and social service team. And don't forget your own family members. Many extended family members have been known to say after transplant, "I didn't know how to help and didn't want to be in the way. I just wish they'd have asked." The key is to ask for help and enlist as many people as possible to share the support opportunities.

.And Then Accept This Support-Without Guilt!
As parents, we have been thrust into this terrifying world with no warning and no preparation. We may be entrenched in the cultural norm of "I'd rather give support to others than accept it myself." Quickly, let go of that belief and accept the caring of others graciously and without guilt. Everyone needs help at some time or another. Now it's your turn. There's no question about it-no parent caregiver can muddle through this tremendous transplant challenge alone. So after you've asked for help, accept it. Save that energy for focusing on your task-bringing home a healthy child with you and your family intact, to life beyond transplant.

One way many caregivers clear the self-imposed barrier of accepting support is by making a personal commitment to provide help to others in the future-to continue the cycle of giving. This may be the key to giving yourself permission to ask for and then accept available support on an ongoing basis. As a wise person once bluntly said to me, "How dare you deprive us of the only thing we can do to help? PLEASE allow us to help you with meals, lawn mowing, pampering, carpooling, gifts, fundraising and public support. It's all we CAN do. It makes us feel good. And who knows? We may need your help one day, too. Please don't shut us out." With that understanding, it may become easier to accept support from friends, neighbors, and even strangers. Remember how good YOU feel when others accept your help? Offer that same gift to those around you. Accepting support helps others as much as it helps you-maybe even more

3. Focus On What's Important
After transplant, many parent caregivers are greeted with awe and feedback from others as if they'd performed a superhuman feat. While it's a challenge to undergo transplant oneself, it's another thing entirely to manage the transplant process for a child who needs our undivided attention as well as a family that craves our participation, love, and care. One way to juggle this load of stress, strain, and pressure is to peel away what's unimportant-at least for the immediate time. The most effective way to manage through transplant with and for our children is to use an ever-present filter of "Is this really important right now?" This "decision-making sieve" will allow you to preserve your attention and strength-and focus that energy where it's needed. Some things, like paying bills, must be attended to in a timely basis. Other chores can be prioritized as a back-burner task. We can only spread ourselves so thin without breaking-so why not spend our attention and energies on our most urgent short and long-term needs? Focus on what's really important and jettison the rest.

4. This Is Important-You Come First!
There's a very sensible reason why, in their safety briefings prior to takeoff, flight attendants tell parents, "In the case of a loss of pressure, oxygen masks will drop down. Put on YOUR mask first. THEN apply your child's mask and attend to their needs." This principle applies to us-the transplant parent caregivers-as well. We certainly can't attend to our child's needs unless we've taken care of ourselves well enough to do so. What may seem like a luxury to you in the scheme of the transplant experience may actually be a necessity to ensure you will be as effective as possible in this role. Let go of the guilt. Here are some reminders of how this works:

• Just Say No
  Let go of the need to please others. If answering the phone's incessant ring is draining, unplug the phone during certain hours. If a procedure is scheduled for your child at a time when it's most difficult for you, ask if an alternative time is possible. Often, we accept what others impose upon us-at greater consequence to ourselves and our families. (If you've forgotten already, go back to the principle above-focus on what's important.) Right now, the health and survival of your child and family is job #1. Being a pleasant hostess, excellent committee member, or super work performer can wait until another day.
• Remember Your Identity
  Somehow, between the incessant pumps beeping in the hospital room, your three changes of clothes you rotate wearing in the hospital room, and the constant concern about your child's "counts," it dawns on transplant parent caregivers that their name has become solely "Mom" or "Dad." (With so many transplant families in and out of the units, most nurses and doctors refer to the generic parent name for everyone!) As strange as it sounds, after rotating night after night in a hospital room or nearby residence, we caregivers can begin to lose a sense of our own identity. Ask friends to remind you what it is that you do well. Ask them to regale you with stories "from the outside." Read books or magazines that stimulate your special interests during the frequent five-minute quiet breaks. A little personal pampering can go a long way to stay grounded-whether it's a special soft music tape to take you "away" now and then or a special robe to wear in the hospital, find ways to honor yourself. Yes, you're an individual that needs to have nurturing, too.
• Preserve The Journey And Life Lessons
  Many parents find it a healthy catharsis to journal their thoughts, emotions and experiences during and after their child's transplant. Bring a laptop or write in a journal to preserve your experience-or use free communication web pages like www.caringbridge.org and www.carepages.com to help family and friends stay connected with you. While "chemo brain" seems to be a phrase used by transplant patients themselves, it's also common for parent caregivers to get so sleep deprived that all details get muddled. Many of these memories may be best left on pages unread by anyone other than you-but you won't know this until months or years later. So record this information now as a remembrance for yourself- and perhaps your child and others-in the years to come.
• Speak Up!
  Find ways to connect with your friends and loved ones that will squeeze within your child's busy hospital routine. Perhaps schedule a nightly online chat group for your closest buddies to catch up on the day's progress and some distracting cyber-laughs that they can bring. Then type like wildfire and enjoy the "company" during the dark and quiet hours between treatments. People want to know how things are going in the isolated world of transplant. While it's a tremendously personal experience for parent and child, often sharing these thoughts on a special Web site for your child, in a group "e-mail blast" or home voicemail message can be a wonderful way to help others feel engaged and for you to feel supported.
• You Deserve Better Than Table Scraps
  OK, be honest. How many peanut butter and jelly sandwich crusts have you ingested by the time you've read this paragraph? How many of your child's unconsumed hospital food tray choices have you polished off "because it's there and it saves a trip to the cafeteria." Healthy food for you means more energy. Get rest when you can. Even squeeze in a brisk walk or run now and then. And eat from the healthy food groups-now, more than ever!
• Go With A Pro
  It's OK to seek support from a professional counselor or therapist. For those of you who need to read this twice, yes, it's OK! Many parent caregivers mistakenly feel that choosing to seek outside support is a sign of weakness. On the contrary, it takes a strong individual to know when outside help can be valuable. Your caregiving style may be vastly different than that of your spouse. You may now be facing strains on your marriage that seemed inconceivable before stepping into the "transplant world." You may not understand your own reactions, moods, behaviors, fears or decisions. You may be stumped by the mood and energy swings coming from "the child you knew so well" who is undergoing transplant and feeling the effects of steroids, chemo and radiation. You may experience issues with your other children or family members that are difficult to manage, on top of all the other strains you're experiencing. All these issues are legitimate-and they are vital to acknowledge and work through. Search for a professional that has experience in dealing with childhood illness and/or family/marriage therapy. Or better yet, ask a trusted friend or workplace Employee Assistance Program (a confidential service often a part of your employee benefits program) professional to do homework for you to select the right counselor(s). Having a skilled and caring professional to listen to your thoughts can provide release, peace, and clarity that will reap rewards for years to come.

5. Do Your Homework, Trust Your Gut, and Don't Look Back
Take advantage of the many resources available to you. Ask questions of your child's medical team, social worker, nutritionist, and child-life specialists. Read research studies on transplant procedures. View support tapes, such as nbmtLINK's awardwinning video The New Normal, addressing life after transplant. Choose your transplant team and hospital according to criteria that's most important to your child's diagnosis and your family's particular needs. Use Internet search engines such as Yahoo or Google to find support group links, specialty organizations, listserves, Web sites for your child's diagnosis, and even other families who have traveled this journey. Because not all information is credible, be discriminating with what you learn and discard that which doesn't add value. And as you make each decision, trust your intent that you've made the best possible decision, with information available at the time-then go with your gut decisions, and don't waste precious emotional energy on "Why did I do this?" questioning. You will face many decisions along the transplant journey with your child-and multiple course corrections along the way. Give yourself credit for doing the best you can, each step of the way.

6. Bring Out the Child In YOU
During the long, challenging, frightening and often boring hours-before, during and after the actual transplant-your creativity may be tested to its limits. Sometimes, our own playfulness can be the best healing therapy for our children as well as ourselves. So why not allow your child to "tie you up with the Velcro straps" on the empty gurney while you wait for a delayed MRI? Why not bring a book of jokes to prompt silly giggles while you try not to think about the bone marrow aspiration yet to come? Why not invent a treasure hunt in your child's hospital room or use approved window "paints" to decorate your surroundings together? Why not learn a new craft with your teenaged patient during these focused hours? Whatever works for you, your child, or your family-try out new alternatives. Pull out all the stops, and don't be embarrassed at your need to bring laughter, joy, fun, and creativity into this scary world. You'll be amazed at some of the beautiful moments to treasure as you and your child look back at "those days during transplant."

7. Look for Beauty
It's a bold statement to suggest that beauty can be found anywhere near your child's transplant procedure. Yet, many transplant parent caregivers have expressed the feelings that even amidst the biggest nightmare of their lives, moments of rare beauty have pulled them through. Take a moment to appreciate the cocoon of support that's been blanketed around you, your child, and family. Send thoughts of support or prayers in honor of your child's amazing donor-for the miracle of life this person has provided your child and family. Think about the advances in medicine, and consider the professional support team that has made this day possible. Appreciate the uninterrupted moments of cuddling in your child's hospital bed, giggling over a story together. Be aware that this journey has brought you a rare glimpse of what's really important in life-an insight that many people never get. At times, these beautiful moments may be all that pulls you through one more medicine pump beep in the middle of the night. Seek and acknowledge these treasures.

8. Be Your Child's Advocate
On a very practical level, be aware that you are the best advocate for your child. Don't be shy about asking question after question of the medical team. You are a part of that team-for and with your child. Don't be afraid to challenge decisions that you don't quite understand or agree with-and then do calmly work out an amicable solution together with the medical team and your child. Document everything! One would think that the medical pros will have it all handled, but we're all human and everyone makes mistakes. Also, your child's team (including perhaps you and your family) operates in shifts, so effective transfer of information is critical. You may never need to re-read all these details, yet from time to time, the notes you've kept will be the vital information necessary to determine next steps. Attend the "rounds" meetings each day regarding your child. Typically, the physician and team will gather together in or outside your child's room to discuss clinical progress, challenges, and courses of action. It is in your child's best interest to listen, learn, and participate in these briefings. Don't be shy about being present. And lastly, remember to solicit your child's input and feedback. Many transplant children feel tremendous frustration that they're constantly being talked "around," rather than being invited to share a comment. YOU can be that advocate to ensure that your child's voice and needs are heard.

9. See Through A Child's Eyes br> Look for ways to enhance your child's surroundings during the transplant experience (possibly months long). Bring her softest slippers or his favorite boxer shorts to wear in bed. Stick glow-in-the-dark stars on her hospital room ceiling. Bring a treasured picture to place on the wall near the radiation equipment, so he might be transported to his own happy world during those long moments of standing still through noise, nausea, and fear. Choose and rotate posters in her room. Hang letters and cards on a wall-to-wall string in the room. Write for your teen's favorite idols to send autographed pictures to display. Arrange for videotaped messages from friends, neighbors, and classmates to be made for your child. Borrow a laptop computer to go online and enjoy the many children's Web sites together. Bring decorations at eye level for your child. Make paper chains together to string throughout the room and add color and cheer for you both. Bring soft and special blankets to comfort you AND your child. As sterile and scary as the room and hospital surroundings may seem to you, remember how your son or daughter perceives them-and then take steps to add delight to those surroundings.

10. Create Opportunities to Honor Siblings
The unfortunate reality is that the transplant process affects siblings in very profound ways. Carve out precious moments for private time with you and your other children, one at a time. Finding time and energy isn't easy. Yet it is so important to be extravigilant attending to sibling's fears, questions, self-esteem, and needs. Take a daily 15- minute walk together. Somehow, being out of doors brings freedom to sharing thoughts, questions, and feelings. Perhaps schedule a nightly phone call to read a bedtime story together, or sing bedtime lullabies. Or choose a special recurring "date night" with an older child to have coffee and hot chocolate in the cafeteria. Ask questions like, "What's the hardest part of this experience for you?" "How can we help you feel special through all this?" And then listen to those feelings your child expresses. Just letting them know that you hear them-and honor their thoughts as valid-is sometimes enough to help siblings through their part of the transplant challenge. Create special moments to carve and strengthen a special relationship- and even lifelong memories-together.

• Sibling Support From The Pro's
  Just as it's helpful for you to have professional support at times, so too can this be a lifeline for the siblings of your child undergoing transplant. Try to arrange for your child to visit with an experienced therapist (or "feelings doctor," as we called her) or hospital social worker on an occasional basis. Siblings need to know that their concerns and feelings are valid-and that it's safe to share their thoughts with someone who cares just about them and won't tell others about these private issues. Sometimes the child may feel guilt or anger about what's happening to their brother or sister-or tremendous frustration about how you have been consumed with the transplant process and their sibling. The best gift you can provide to this child is the safe, confidential, and caring environment to help him process through these conflicting and confusing feelings.
• Encourage Happy Reminders
  Ask neighbors, friends, synagogue, church members, or schoolmates to send "happy cards" to your other children. While your child undergoing transplant may receive daily cards and gifts, it is difficult to watch their siblings race to the mailbox every day and return knowing that nothing is for them. Caring cards and letters can reinforce the feelings that these children are valued and special as well.
• Siblings As Special Heroes
  Bestow a hero's title on these special siblings. While many people will praise the transplant child for being so brave and heroic-or fawn over a sibling marrow/stem cell donor as being a special hero-often, the other siblings feel left by the wayside, having no special "role" or "value." You can create a special designation for your other children: "Champion Hero" or "Life Hero." We call them SuperSibs! Reinforce that this title holds important meaning as well-that the child is special just for being who she is. As well, these sibling heroes add true healing value-by their energy, support, sense of humor, reminders of stories, and "real" life outside the transplant world. Look this child in the eye and tell them sincerely and directly what makes them so very treasured and special to you. Do this often.
• Choose Your Words Carefully
  Many parents and professionals unfortunately use language that can become a lifelong wound for siblings whose marrow is not a perfect match for the brother or sister in need of a transplant. When parents and others say, "Steven didn't match," this can become a very challenging and negative imprint for that well sibling. This negative language is an inappropriate and far too heavy burden for siblings to carry the feeling that "I wasn't a match." Many siblings then feel like they weren't good enough; they didn't do enough; or that they failed in a life-threatening situation. Instead, parents (and transplant professionals) can use this more appropriate language: "When no one in the family was a close enough match..." This slight change in language can mean the world of difference for the selfesteem and emotional healing for siblings and even impact their lives going forward in a profoundly more positive way. It's important to reinforce the concept: that the whole family is in this together-that "No one in our family was a match," rather than the sense that "It was all up to you, and you didn't match."
  "And if there is a sibling match."
  Remember that a sibling can feel a tremendous amount of pressure and responsibility if he's called upon to donate marrow or stem cells for his brother or sister. Do make sure he's informed about the process, in age-appropriate language and in ongoing conversations. Encourage him to ask questions and talk about how he feels to be a donor. If positioned that the survival of their sibling "depends on your stem cells or marrow," this can feel overwhelming for a child. Rather, parents can position the sibling's donation as a wonderful opportunity to help in a way that gives his brother or sister an even better chance for full health and recovery.
• Engage The Siblings
  Help siblings understand what's going on around them, as appropriate to their level of maturity. Rather than shut the siblings out of appointments or hospital visits, help engage them in the healing process. Talk to the hospital transplant team about encouraging sibling visits as part of the healing process. Teach siblings the full hand-washing and anti-microbial cleaning procedures. Enlist their help in being vigilant-and even as the official reminders of others to do so. Older siblings can take the lead on helping to flush lines or other procedures. Engage all your children in the hopes of life beyond transplant. If you are working with an organization to fulfill a special wish for your transplant child, include all of the siblings. The power of that wish for the future can be as strong for the siblings at home as it is for the child in the hospital.
• Recognize Sibling Uniqueness
  Just as you are more than "Mom" or "Dad," so too is the sibling more than the transplant child's "little/big brother/sister." Encourage friends, family, neighbors, medical staff, school personnel, and others to refer to these siblings by THEIR names-not always in the context of the transplant child. Their identity is so important. While engaging the sibling in the transplant process is important, it should not be imposed or all-consuming, either. Plan for a flow of involvement, mixed with special interest and conversation about the sibling's interests, hobbies and school performance. Whatever you and others can do to honor each sibling's unique and non-transplant-related activities will be a strong foundation to support their "recovery" from this process.

11. Fasten Your Seatbelt-Before, During, AND After
A harsh reality that sets in for all transplant parent caregivers is that this is one, loooooooooooooooooooooooong roller coaster ride. "Don't get too excited during the highs, and don't get too discouraged during the lows. Try to somehow manage in the middle." Whatever that means, right? While many people (undergoing transplant or just observing from the "outside") believe that after transplant and homecoming you're "finally done," it's just not that simple. Particularly as parents of children who have undergone transplant, the job of caregiving can increase in intensity once the child is discharged from the hospital. Suddenly all that round-the-clock care that was provided in the hospital (sometimes to you, too!) is now all on your shoulders. Ordering supplies, changing dressings, administering meds, preparing food, transporting back and forth to clinic check-ups, dealing with setbacks, and managing household and family logistics is a huge undertaking. Being aware of this phase of the journey in advance may help as you wonder "Why isn't this easier now that we're home?"

And AFTER Transplant?
After the return home from months away during our son's transplant, I recall heaving a sigh of relief, as if I'd held off a huge freight train with my arms locked in front of me. At that point, I apparently "let my arms down," thinking the "train" was now gone. Somehow, I thought it disappeared after we'd left the hospital. Much to my surprise, the "freight train" ran me over-body and soul. I'd not realized or acknowledged how deeply the transplant process had drained my every source of strength, mentally and physically. In fact, some parent caregivers are officially diagnosed with Post- Traumatic Stress Syndrome as a result of this life challenge. This was true in my case. Through rest, proper nutrition, and excellent counseling, I was able to work through this latest development. Another lesson I personally learned was that it became too difficult to be a primary caregiver for my children during the transplant process AND a working professional all at the same time. Some parents negotiate with their employers for a paid leave of absence (ideally, in a dream world) or vacation (sometimes with days donated by other colleagues), unpaid days off, or changed performance expectations to manage through the most difficult months. In my case, I qualified for Short Term Disability leave of absence, due to the official medical diagnosis of Post-Traumatic Stress Syndrome. While this would have never crossed my mind (I figured I would just have to quit), it became clear that the benefits coverage to which I was entitled did in fact apply. This may not be an option for many working parent caregivers, but the lesson learned is to consider all the options available and acknowledge the tremendous responsibility you have been shouldering. Use your support resources-and reframe your thinking from "When is this over?" to "Life after transplant" with greater insight and wisdom and commitment to self care.

12. Think Positive
While there are moments during the transplant journey when we as parent caregivers feel "positively negative"-more often than not, a positive attitude can make a significant difference to pull our child and ourselves through the darkest moments. Find others who have successfully moved through and beyond transplant. These people can be powerful beacons of hope. One phrase that helped our family focus on the positive during even the most awful and blunt medical conversations was, "Even if the odds were 99:1, someone would have to be that 'one.' THAT'S going to be our child." Another helpful thought: As a wise transplant patient once said, "I may have cancer, but cancer doesn't have me." This phrase applies to us as parents of children going through transplants as well. One thing I know for sure is that a positive attitude might help-and it surely won't hurt. Envision life beyond transplant with something exciting to wish for and come true. Picture graduation or a special family trip together. Use that vision as a powerful draw to guide you through difficult moments and mood swings together. Then, when this day comes true for you, include your closest friends and family to celebrate the miracle of life together.

13. Give Forward One unexpected outcome of having experienced the transplant process with one's child is the tremendous knowledge and experience you now carry. This insight can be of immense value to others not yet as far on this path as you, your child, and your family. Sharing these stories, information and lessons learned with school classes, public groups, news media, friends, and other patient families can help further the research support for marrow and stem cell transplantation. You may interest others to enter the National Marrow Donor Program Registry as a potential donor. You may help other families cope with challenging situations. Be available as a resource to parents, children, or organizations that may benefit from your unofficial "Transplant Graduate Degree." Become involved in the organizations that helped save your child's life (and your sanity). Contribute to a special service at your house of worship-to celebrate life and honor those that are still facing the challenge of survival and cure. Bring your child back to visit the transplant wing of the hospital to thank the medical team for their hard work and caring-and to bring hope to them and others who are experiencing the transplant intensity. You can remind them that there is hope-that there is "life beyond transplant." You can make a difference in the lives of others, and serve as a role model for your own children, by giving forward to others who may be in need-just as you and your family once were. Honor this gift of life with your caring and insights to enrich the lives of others.

Melanie Goldish, MA, is the mother of a bone marrow transplant survivor. In May 1998, her five year old son Travis was diagnosed with Acute Lymphoblastic Leukemia (Philadelphia Chromosome). Travis received an unrelated marrow donor transplant in September 1998 from their "hero" donor Marj. Melanie is the Executive Director of SuperSibs!-a nonprofit organization to honor, support and recognize siblings of children diagnosed with cancer (www.supersibs.org). She also serves on the National Marrow Donor Program Board of Directors and The Marrow Foundation Advisory Board. She holds a Master of Arts degree from the University of Minnesota and is the proud mother of two miracle sons, Travis and Spencer.

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