Fujisawa Healthcare, Inc. andmy marrow · me andmy marrow A Kid’s Guide to Bone Marrow Transplants By Karen Crowe Illustrated by Norm Bendell Fujisawa Healthcare, Inc

meand mymarrow

A Kid’s Guide to Bone Marrow TransplantsBy Karen Crowe Illustrated by Norm Bendell

Fujisawa Healthcare, Inc.

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meand mymarrow

A Kid’s Guide to Bone Marrow TransplantsBy Karen Crowe Illustrated by Norm Bendell

Fujisawa Healthcare, Inc.

Text copyright © 1999 by Fujisawa Healthcare, Inc.Illustrations copyright © 1999 by Norm BendellPublished in 1999 by Fujisawa Healthcare, Inc.

Parkway North Center3 Parkway NorthDeerfield, IL 60015-2548phone: 1.800.727.7003e-mail: [email protected]

Editorial Development: Karen CroweArt Director & Designer: Elaine M. LeonardIllustrations: Norm Bendell

Published simultaneously in Canada by FujisawaCanada, Inc., Toronto.

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any meanselectronic or mechanical, including photocopying,recording, or by any information storage and retrievalsystem, without permission in writing from FujisawaHealthcare, Inc.

Printed in the United States of America.

Acknowledgements: Thank you to all the BMT patients,family members, and technical advisors who share dtheir experiences and expertise to make this book agreat resource to those who need it.

Visit http//:www.fujisawa.comto find the information in this book and much,

much more. YouÕll learn about other helpful books to read, videos to watch, newsletters to subscribe to, and web sites to visit. And youÕll find out how

you can share your story with others.

Dear Reader,When Cristina Cuzzone was 9 years old, she was diagnosed with leukemia. After she underwent 6 weeks of chemotherapy,her health had not improved, so doctors recommended a bonemarrow transplant. It was a scary time for Cristina and her family.They didnÕt know anyone who had been through a transplant and werenÕt sure what to expect. But Cristina bravely endure dher treatment.

A few years later, Cristina spoke up: ÒThere should be a book forkids that explains all about transplants!Ó she said. We agreed, andthis book is the result of CristinaÕs inspiration. In it, youÕll learnwhat transplants are, how they are done, what your treatment willfeel like, and ways to cope during difficult times. Throughout thebook, Cristina is your special guide. She offers helpful tips andexplains what she was thinking and feeling during each stage ofher treatment.

This book will remind you that youÕre not alone. Each year,more than 2,000 kids in the U.S. get bone marrow transplants.Many of them have also shared their advice and experiences in these pages, hoping to make your transplant easier for you.

You can read this book from beginning to end or flip through it and just read pages on certain topics. We hope it will answeryour questions and help you feel more comfortable during yourtransplant. Best wishes for a smooth journey through yourtreatment and a bright future ahead!

Cristina, age 9

21/2 months into treatment

Cristina, age 13 4 years after transplant

Fujisawa Healthcare, Inc.www.fujisawa.com

During Your TransplantThe Transplant

What the transplant feels like, how your bodyresponds, waiting for the cells to engraft

Possible Complications

Problems that might slow your recovery and thingsyou can do to help avoid them

Physical Changes

Suggestions for coping with hair loss or weightchanges

Table of Contents

8

6

10

12

14

16

19

22

26

28

30

Before Your TransplantGetting the News

Common reactions, suggestions for coping

Bone Marro w Basics

How your bone marrow works, what a transplant is, why you need one, how it is done

Hospital Questions

Answers to questions about your stay

Get Comfortable!

Things to bring that will make you feel at home

Preparing Your Body

Getting a central line, chemotherapy and radiation therapy, protective isolation

Side Effects, Head to Toe

Causes of side effects and what you may be able to do to ease them

Mind over Body

Mental tricks that can help you feel better

Tips for TalkingImproving communication with your transplant team

The HarvestMarrow matching, finding a donor, your donor’s experience

24

After Your TransplantKeeping BusyFun things to do while stuck in the hospital or at home

Leaving the HospitalRules for release, clinic visits, healing at home

Eats and TreatsSuggestions to make eating easier, food-handling tips

Family Matters!How to improve relationships with siblings and parents

Back to SchoolResuming old friendships, talking about your experience, keeping up in class

Focus on the FutureHealth problems that may develop later, your changed outlook on life

Get Better, Give Back!What’s Cristina up to now? How you can help others

38

40

42

44

46

48

33

Before Your Transplant6

Getting the News

ÒI didnÕt understand the terms the doctors used, but IdidnÕt worry ÑI knew the transplant was only goingto make me better,Ó Cristina says. ÒI knew eventually IÕdunderstand . They explained it all to me again later.Ó

A Flood of FeelingsA bone marrow transplant is a complicatedprocedure. The more you understand about your treatment, though, the less stressful it willprobably be. This book will explain what youcan expect during each phase of your transplantand teach you ways to help yourself feel better.

When you first learned you needed a transplant,you may have felt afraid. Or you might have beenconfused about what lay ahead. You may havebeen angry if youÕve undergone other difficulttreatment that didnÕt cure your disease. Or maybeyou felt shocked, and unable to think. These areall normal reactions. In fact, you may have feltseveral of these emotions at the same time.

Me and My Marrow 7

Talking about It Bone marrow transplants can be overwhelming ÑthereÕs so much to learn about the treatment youÕllbe receiving. You and your family might feel worried or frustrated at times. It's OK to cry. It'salso OK if you don't want to hear details aboutyour treatment or discuss your transplant rightaway. When you are ready, though, sharing yourfeelings with family members, friends, or hospitalcaregivers can help. Talking about your fears andhopes can strengthen your relationships, whichwill support you through the challenges to come.

The Road to RecoveryThe journey ahead of you will not be easy, butremember: other kids have gone down this roadbefore you and say that itÕs worth it. You can help yourself get well by trying to keep a positiveattitude. That doesn't mean you have to becheerful or brave all the time Ñafter all, having atransplant stinks! Just remember that every part ofyour treatment is necessary to make you better.

Take one day at a time. DonÕt worry about whatwill happen a few weeks or months from now.Control the things you can, and leave the rest to your doctors and nurses. Whenever possible,laugh and smile. Set goals for yourself, both in the hospital and beyond. Talk about yourdreams and plans for your future. If you keepyour hopes high, your body will have moreenergy to heal itself.

Mixed EmotionsThese kids explain how theyfelt when they got the news.

“I was angry andreally upset becauseI had gone throughso much already and

it wasn’t working. But if youhave cancer, you try anything.”

Age 15, 3 1/2 years after transplant

“I really didn’tunderstand it all, butI knew my mom anddad were scared, so

that scared me.”

Age 9, 3 years after transplant

“I was excitedbecause I knew Icould get better bygetting someone

else’s bone marrow.”



What is a BMT?Bone marrow transplants, or ÒBMTs,Ó are performed to treat many types of cancer andother diseases. During a BMT, healthy bonemarrow cel ls Ñspecifically, stem cellsÑ aretransplanted into a person who has diseased or damaged marrow. (ThatÕs why BMTs are alsocalled Òstem cell transplants,Ó or ÒSCTs.Ó)

Why do I need one?Blood Diseases: Many kids who need a BMT orSCT have bone marrow that isn't working pro p-erly. Kids with leukemia Ñlike Cristina Ñhavebone marrow that is overproducing abnormalwhite blood cells. The abnormal cells crowd outthe normal cells and keep them from doing theirjob. Kids with other blood diseases may have mar-row that doesnÕt produce enough blood cells. Atransplant can help correct these kinds of diseasesby replacing the patientÕs unhealthy bone marro wcells with healthy cells that work properly. Thehealthy stem cells build a new bone marrow fac-tory where healthy blood cells are then produced.

Solid Tumor Cancers: Some kids have a cancerous tumor in their body thatÕs especiallyhard to get rid of. When this happens, doctorsuse very high doses of chemotherapy and some-times also radiation therapy to make the tumor goaway. Unfortunately, this high-dose treatmentalso damages the healthy cells in the patientÕsbone marrow. To help the patient rebuild his or her bone marro w factory, doctors removesome of the patientÕs marrow or stem cells tosave. Then after the radiation or chemotherapytreatment is over, they give the saved stem cellsback to the patient as a bone marrow Òrescue.Ó

Bone Marrow Basics

How Your BoneMarrow Works

Bone marrow is aspongy material found in the center of your bones.It’s the “factory” where yourbody’s blood cells are made.

Inside your bone marrow are worker cells called stemcells. Their job is to producethree types of blood cells:

red blood cells carry oxygen (fuel) from yourlungs throughout your body

white blood cells fight infections and protect yourbody from germs

platelets form clots to stopthe bleeding when you get cut

Where will the healthystem cells come from?Your new stem cells will be donated by someonewhose marrow type closely matches your own.Family members will be tested to see whethertheir marrow is a good match. If not, the hospitalwill look for a donor who is not related to you.Sometimes patients can donate stem cells back to themselves. Your doctor will let you knowwhether this is possible. If not, finding a donorcould take months. As you wait, doctors will treatyour illness the best they can. During this time, try to build your strength through a healthy dietand exercise. (Pages 24-25 explain more aboutmarrow matching and cell collection.)

How are the new stemcells transplanted?YouÕll receive the donated stem cells through anIV. TheyÕll travel through your bloodstream to thespace in the center of your bones. There, theyÕllset up their factory and start producing healthynew blood cells. (See pages 26-27 to read moreabout the transplant experience.)

“In the beginning, I didn’twant to know anythingabout my treatment. Butlater, I wanted to knoweverything that was goingto happen—no secrets.When I know what’s goingon, I’m not as scared.”


About one-third of all BMTpatients will have a siblingwhose bone marrow is agood match.

Hospital QuestionsFor the next several months, your transplant doctors and nurses willbe providing you with special care. You'll spend some of that timein the hospital. The more prepared you are for your stay, the morecomfortable youÕll be. Here are answers to some common questionskids have about their hospital stay. These pages will help you knowwhat to expect before you go.

How long will I be there?Usually patients spend one ormore months in the hospital, butevery patient's situation is differ-ent. How quickly you can be dis-charged depends on how quicklyyour bone marrow and bodyrecover from the transplant.

What will happenwhen I arrive?Once you're admitted, you'll betaken on a tour of the transplantunit to see how the equipmentworks and to meet the peoplewho will be involved with yourtreatment. They'll explain proce-dures and tell you some of thethings you can expect.

Will I be able to see my family?Once your treatment has begun and your risk of infectionbecomes greater, you may onlybe allowed to have one or twofamily visitors. Some hospitalspermit a parent to stay in yourroom with you, especially if thehospital is far from your home.

Will I have tests?Doctors may want you to have the following tests to makesure youÕre as healthy as possible.(Any infectionsÑno matter howsmallÑmust be treated and elimi-nated before the transplant can bedone.) Doctors will also comparethe tests done before and afteryour transplant to see how yourbody may have changed due toyour treatment.

Chest x-ray: to check yourlungs for pneumonia. EKG (electrocardiogram):to look at your heart rhythm.Sample “cultures”: taken of throat, urine, stool, and noseto check for infections. Blood draws: to check yourblood-cell counts.

The members of your treatmentteam are experts in BMTs andSCTs. Besides the doctors andnurses who specialize in trans-plants, youÕll probably alsowork with the following people.

Transplant coordinator:explains special procedures and treatment to you throughoutyour stay.

Dietician or nutritionist:meets with you to create menusbased on foods that you like andthat will aid your recovery.

Child-life specialist: helps you and your family adjust to hospital life.

Hospital dentist: examines your mouth, teeth, and gumsthroughout your transplant and treats any problems.

Radiation technician: uses radiation to prepare your bodyfor the transplant.

Phlebotomist: collects bloodsamples for testing.

Physical therapist: helps youexercise and stay fit while youÕrein the hospital.

Who are all these people?

Get Comfortable!

“I hung a string of fun,decorative lights to make myroom more cheerful. Since I traveled to another city

to get my transplant, I also broughtpictures of my favorite doctors andnurses from home, and a photo of friend who was a patient there.”

Age 13, 1 year after transplant

In some hospitals, youÕll stay in a special germ-free room from thetime youÕre admitted until youÕre discharged. In others, youÕll moveinto a new room after your transplant. Either way, youÕll probably feelmore at home if you fix up your space to make it yours. Bring thingsfrom home to help you pass the time and make yourself comfortable.

To help you pass the time, bringbooks, games, craft/hobby kits,stationery, your address book,videotapes, CDs or audiotapes,and a Walkman or boom box.

“I put up posters that afriend drew. They mostlyhad positive thoughts.”

Age 12, 9 months after transplant

“I brought a laptop computerso I could play video gamesand go on the internet.”

Age 14, 1 month after transplant

13

ÒThe first thing doctors wanted me to do was tomake the room look the way I wanted it to. I putup pictures of my family and made a big collageon the wall of all the cards I got,Ó says Cristina.

Important! Leave live plants and flowers athome—your room must be kept sterile. (Plants may carry fungi, molds,or bacteria that could cause seriousinfections.) Check to see if your hospital has any other restrictions.

To make your hospital stay morecomfortable, bring loose-fittingclothes, pajamas, slippers, arobe, and a quilt or pillow fromyour bed at home.

“I brought my stuffed animals and my pillow fromCamp Sunshine—a camp forkids with cancer.”

Age 14, 6 weeks after transplant

Preparing Your Body Your Central LineDuring your transplant, you'll be givenlots of injected medicines, blood transfu-sions, and other IV fluids like liquidnutrients. You'll also need to have bloodsamples drawn and checked every day.So that these procedures can be donepainlessly, your doctor will give you a central lineÑa tube thatÕs surgicallyplaced in your chest. It will connect to a large vein and enable your transplantteam to care for you without pokingyou with needles several times a day.

ChemotherapyBefore youÕre given your new stemcells, doctors need to prepare yourbody for them. About a week beforeyour transplant, youÕll begin receivingchemotherapy. You may have hadchemotherapy before, but this time the doses of medicine will be muchstronger. The chemotherapy not onlyhas to kill any cancer cells still in yourbody (if you have cancer), it also hasto destroy your bone marrow cells sothey wonÕt fight off the new donatedcells once theyÕre transplanted.(Chemotherapy can sometimes haveuncomfortable side effects. See pages16-18 for coping suggestions.)

The nurse will change your central line’s dressing every day.The area may feel a little tenderat first, but any discomfort willgo away in a day or two.

Me and My Marrow 15

Special ProtectionAfter you receive chemo-therapy/radiation therapy,your white blood cells will bedestroyed. Germs that wouldnormally not bother you canmake you very sick at thisstage. Cleanliness is especiallyimportant for you now.

To keep you safe from infection,doctors, nurses, and visitorsmay need to put on sanitaryclothing such as hospital gowns,masks, and gloves before enter-ing your room. Even moreimportant, they’ll have to scrubwith special germ-killing soap.Hand-washing is the bestmethod to control infection. Infact, many hospitals encouragekids to be the hand-washingpolice. Join the squad—askeveryone who comes into yourroom, including your doctorsand nurses: “Have you washedyour hands?”

Radiation TherapyIn addition to chemotherapy, you may alsoreceive radiation therapy to prepare your bodyfor your transplant. Powerful x-rays will beaimed at your body to help destroy your bonemarrow and any cancer cells. The x-rays are thesame kind used to see a broken bone, buttheyÕre given in much higher doses.

How radiation is given: Before your treat-ment, the technician will measure your body andmark it with a pen. These marks help the techni-cian guide the x-rays to the right places. Heavylead pads, or Òblocks,Ó may be placed on parts of your body to protect sensitive organs. Becauseyou must stay in one position without movingduring the entire treatment, you may be given a medication to help you relax and remain still.Treatments usually last 10-15 minutes and may be given twice a day, several days in a row.

What it feels like: Getting radiation treatmentis a lot like getting an x-ray: the machine makes a soft clicking sound and doesnÕt hurt. Some kidssay their skin feels warm or tingly afterwards. You may feel tired and want to sleep when thetreatment is over. In some hospitals, you can talkto the technician or family members through aspeaker while receiving radiation. (Pages 19-21give tips for making yourself more comfortable if you feel a little anxious during your treatment.)

A Well-Deserved BreakYou will probably be given a break from alltherapy on the day before your transplant. Thisgives your body time to recover and rid itself ofsome of the chemotherapy that could harm thenew stem cells youÕll be receiving.

Side Effects,Head to ToeRadiation therapy, chemotherapy, and other drugs used in transplantscan cause unpleasant side effects. Most go away after treatment ends.You may experience several, a few, or none of the more commonones listed on these pages. Some side effects can be controlled bymedications or by changing your diet or routine. Others canÕt be prevented, but knowing they are normal may help you worry less.

Hair LossChemotherapy drugs destroy cancercells and other cells that reproducerapidly, like hair cells. With some people, hair just thins. With others, it falls out from a few sections of thescalp or completelyÑeyebrows andeyelashes included. Hair usually growsback within 3 to 6 months, sometimesa different shade or texture .

What you can do: If your hair is long,you may want to cut it short before yourtransplant so it’s not such a drastic change ifyour hair starts to thin. Also, short hair is notas heavy as long hair, so hair that doesn’tfall out will have a fuller look if it is shorter.(To read how other kids dealt with their thin-ning hair, turn to pages 30-32.)

FatigueMany things can make you feel tired:your body is working overtime to healitself; youÕre probably not sleeping aswell as you did at home; you may notbe eating enough due to nausea or lossof appetite; medicines that treat nauseaand pain can cause drowsiness.

What you can do: Take naps during the day and eat well-balanced meals andsnacks. Even though you’re tired, it’s impor-tant to exercise. Activity actually gives youenergy and helps keep your body strong.On days when you have more energy, thephysical therapist can make exercising fun.When you're feeling really drained, try atleast to get up to bathe and clean your teeth.

Mood Changes Treatment and medications may affectyour personality, taking you on an emo-tional roller-coaster ride. You may feelnormal one minute and upset the next.

What you can do: Talk to your doctor to find out if medications are causing yourmoodiness, and whether they can be adjusted.

17

Mouth ProblemsChemotherapy irritates the rapidly reproducing cells that line your mouthand throat. Sores may develop, makingit hard to eat or swallow.

What you can do:

Eat cool, soft foods that are easy to chewand swallow (such as ice cream, cottagecheese, applesauce, and puddings).

Drink liquids through a straw. Suck on ice chips.

Avoid citrus fruit and juices, tomato sauces,spicy or salty foods (such as potato chips or pretzels), and rough or dry foods (such ascrackers or toast).

Because your germ-fighting whiteblood cells were wiped out by chemo-therapy, mouth sores can becomeinfected. Also, because your plateletcount is low, your gums may bleedafter you eat or clean your teeth.

What you can do: Good oral care can actually prevent many mouth problems. Gently clean your teeth with a spongette andrinse with medicated mouthwashes severaltimes a day. Rinsing often with saline waterwill also help remove food and bacteria.

Your taste buds may not work properlyfor several weeks after your transplantdue to reduced saliva in your mouth ormedications youÕre taking. Foods mighttaste different to you Ñthey may haveless taste or a bitter or metallic flavor.

What you can do: Once your treatmentis over and your saliva glands and taste budsheal, food will taste good again. Until then,try increasing the seasoning in your foods.Drink water, eat hard candy, and chew gumto help make your mouth more moist.

The cleaner you keepyour mouth, the betterit will feel!


Changes in Body AppearanceCertain drugs may cause fluids to collect in your body, making yourface, stomach, and legs swell.

What you can do: When your recoveryis complete, your body will return to normal.In the meantime, your doctor may suggest youcut back on salty foods or give you medicineto help your body eliminate the extra fluid.

Nausea/VomitingChemotherapy may upset your stom-ach. You may even begin to feel sickjust thinking about your treatmentbefore it begins.

What you can do: The nurse can giveyou medicine to lessen your nausea. It alsohelps to wear loose, comfortable clothing.Don’t eat for a few hours before therapy.Instead, drink clear liquids like water, applejuice, or ginger ale. Later, when you feel youcan eat, try dry, bland foods such as crack-ers or pretzels. Avoid warm foods, which canhave strong smells that trigger nausea. Restsitting up for an hour after meals.

DiarrheaChemotherapy irritates the cells thatline your stomach and intestines. Yourbody isnÕt able to digest food as well,which can lead to diarrhea. Intestinalinfections can also cause diarrhea,which may be severe .

What you can do: If it’s hard to make itto the bathroom, ask for a portable toilet to be placed next to your bed. Nurses can giveyou medicated creams if you’re sore fromwiping. Avoid milk products, and greasy orspicy foods. Instead, eat bland foods low infiber (noodles, white rice, or applesauce),and drink plenty of clear, room-temperature fluids. As your body heals from your trans-plant, you’ll begin to feel better.

Inability to EatDuring the days of your transplant, a sore mouth and upset stomach maymake eating just too difficult.

What you can do: If you just can’tbring yourself to eat, don’t worry. Your doctors will make sure you receive goodnutrition through your IV or nasal tube. (It’s important to keep your digestive systemworking if possible, though, so see pages40-41 for more advice about eating.)

Me and My Marrow 19

Mind over BodyDid you know your mind can actually make your body feel better?You can train your brain to help you cope with uncomfortable proce-dures or boost your mood on a bad day. To be successful, you mustpractice these mental tricks a few times before using them. Your child-life specialist or a nurse trained in these techniques can help you master them even better.

ÒWeÕd do something different to keep my mind offthings,Ó Cristina says. ÒLike playing a new game ÑIÕdhave to really concentrate to learn how to play.Ó

RelaxationWorry or stress sometimes actually causes nauseaand even pain. Here are a few techniques torelax your mind and help your body overcomepain, nausea, and other discomforts:

• Get in a comfortable position. Breathe in deeplythrough your nose for a count of 3. Exhale slowlythrough your mouth, counting to 3. Each time youbreathe out, let go of your tension or scary feelings.Visualize your pain or nausea leaving your body. Let it drain out of your head, shoulders, stomach, arms,and legs, down onto the floor, and away for good.

• Calming activities such as crossword puzzles,embroidery, and slow-paced computer games likesolitaire slow your breathing and heart rate andhelp your muscles relax. Next time you feel tense,try a relaxing hobby to calm you down.

DistractionGive your mind something positive to focus on when you're uncomfortable; otherwise itmay concentrate on negative feelings like fearor pain. To distract yourself during an unpleas-ant procedure, you can play mental games likethis: try spelling the names of people in theroom backwards. Simple things like talking, listening to music, or watching TV work, too.

ImageryYour mind can take you to a place farfrom the hospital and an uncomfortableprocedure youÕre having. You can goanywhere you want! Here's how:

1 Find an object in the room and stare atit. Breathe deeply to relax your body. Thenimagine a peaceful scene such as a sandybeach with waving palm trees, a clear bluesky, and bright sunshine.

2 Now imagine yourself on the beach.Use a variety of senses. Feel a warmbreeze blowing. Smell the salty air. Seesailboats in the distance. Hear seagullscrying and waves crashing. You can doanything you want here—build a sand cas-tle, look for colorful seashells, or jump inthe water and body surf. Let your mind bea movie screen, showing you pictures ofthings you enjoy. You might even writedown your scene or record it on tape soyou can listen to it later.

You can return to this place wheneveryou want or you can visit another. Hereare some other relaxing scenes youmight imagine:

• floating in a hot-air balloon among the clouds

• standing under a cool waterfall in a tropical forest

• lying under a tree in a field of colorfulflowers

• watching the sunset with your dog• walking with a friend on a moonlit night

You can also imagine yourself doingthings you've enjoyed in the pastÑlikerelaxing with your family on a favoritevacation or holiday. Remember the goodfeelings, and your brain will relive theexperience as if itÕs happening again.

Me and My Marrow 21

Peace through prayer: Many peoplefind strength in family, friends, andGod. Some kids say that praying Ñby themselves, with a family member, or with a hospital chaplain Ñgivesthem hope and strength to fight their disease. If you belong to a youth group, praying with your leader or group members on thephone may also give you comfort.

Connect through computers: If yourhospital has the equipment, you may beable to e-mail family and friends or chaton-line with your classmates or otherhospitalized kids across the country. Visithttp://www.fujisawa.com for a list of recommended networks, chat groups,and entertaining and helpful web sites.

Keep Spirits HighHere are some ways to keep a positive attitude, day in and day out.

Just as a bad mood may make you feelsicker, humor helps heal. Ask familyand friends to send you cards, letters,or videotapes that make you laugh.

Hang a schedule of your daily activitieson your wall and ask your caregivers torespect your private times. This will helpyou get more done and give you morecontrol over how you spend your days.

“We rented one movie thatmade me laugh so hard I didn’tfeel the bad effects of my medi-cine. I just felt so much better.

Laughter definitely helps!

“My schedule made it easier for me to dothe hard things. Instead of being tempted toskip things, I knew they’d help me get better.If it was on the schedule, it had to be done.”


Support from Others


Here are some suggestions for how totalk about what worries you:

Don't be too frightened to ask questions about your treatment. Proceduresare often less scary than you imagined.When you know what’s ahead, you’ll feelmore control over the situation.

Do expect truthful answers. You may notwant to hear that a procedure is going tohurt, but being surprised is usually worse.

Don't be afraid to ask the same questionmore than once, or that your questions willsound dumb. Most of us don’t know muchabout how our bodies work. Doctors andnurses will be glad you're interested and want to help you learn more.

Do expect clear explanations about yourtreatment. To help you get comfortable with new equipment, doctors or nurses maydemonstrate or let you try a new procedureon a doll before it’s done to you.

Don't worry that your questions take uptoo much of your doctor's time. It's yourbody, and you have a right to learn what'sgoing on. If you’re asleep or in the bath-room when your doctor stops by, see if he orshe can come back when you can talk.

Do write down your questions so you'llremember them, and jot down the answerswhen you get them. If you’re feeling too sickto ask your questions, have a family mem-ber ask and write the answers for you.Below are some questions you may have.

Tips for TalkingDuring your treatment, there may be days you wish you couldrun away from it all. You may feel angry when nurses or doctorsperform unpleasant procedures or frightened when you donÕtknow what to expect. Talking with your caregivers can help.

Discussion Dos and Don’ts

ÒIf my nurses were giving me a medicine that wouldmake me feel bad, theyÕd tell me ,Ó Cristina says. ÒAndwhen they said it wasn’t going to hurt, I could relaxbecause I knew they were telling the truth.Ó

Me and My Marrow 23

Participation PointersDid you know you can sometimes help makedecisions about your treatment? Doctors or nursesmay be able to make a procedure more comfort-able if they know how you feel. Here are someways to get more involved in your care :

• If you feel better when a parent is with you for a procedure—to hold your hand or talk to you—askwhat treatment they may be able to stay with you for.

• You may be able to make choices about some ofyour routines, such as which medication to take firstor what position you want to be in for procedures. Letyour doctors and nurses know if you have a request.

• You'll be working with your treatment team for a longtime—make friends with them. Ask them about them-selves: what they like to do for fun, or what their favoritekind of music is. Good friends make good teammates!

Cristina’s Story

Learn More, Fear Less! Whenever Cristina had toundergo a new procedure,her caregivers made it like ascience project. The doctorsshowed Cristina her x-raysand explained them to her.Technicians let her look at herblood samples under a micro-scope to see how her cellswere doing. And when shehad stomach problems thatneeded to be checked, doc-tors used a special camera totake internal pictures, thenshowed the photos to Cris-tina. Learning about all thesethings made new proceduresless scary for Cristina.

The Harvest

Finding a DonorYour donor will be one of the following people:¥ yourself¥ a sibling or other family member¥ someone not related to you

Whether or not youÕll be able to donate yourown stem cells depends on the type of diseaseyou have and your current condition. Your doctorwill let you know if you can be your own donor.

If you have a sibling, thereÕs a 25 percent chancethat his or her bone marrow type will matchyours. An identical twinÕs marrow will matchyours exactly. Unfortunately, itÕs likely that noneof your family members will have matching bonemarrow. Then an unrelated donor must be found.A search for a suitable donor will be carried outin the U.S. and even foreign countries.

Collecting Stem CellsThe stem cells youÕll receive will be collectedfrom one of three places:¥ a personÕs bone marrow Ñthe largest amount is found in the hip bones¥ blood thatÕs circulating through a personÕsbody Ñthese stem cells are called peripheral(pe-RIF-er-al) stem cells¥ the umbilical cord of a newborn baby Ñfull ofstem cells

The procedure to collect the donated bone marrow or stem cells iscalled the harvest. Before the harvest can take place, a donor mustbe found. If tests show that your brother or sister can be your donor,you may want to share these pages with him or her.

Why MarrowMust Match Only cells that are very simi-lar to your own can be usedfor your transplant. If yourmarrow type did not matchyour donor’s, the transplantedcells would notice that yourbody’s cells were different,and attack them.

Even when your donor’s cellsare very similar to your own,there are still some smallgenetic differences. So it maytake time for your body’s cellsand the transplanted cells tolearn to work together.

If you’re donating cells backto yourself, your recoverywill probably be quicker. Thetransplanted cells and yourbody’s cells won’t fight at allbecause they’ll be old friends.

Me and My Marrow 25

A Donor’s Experience Bone marrow donor: The donor enters thehospital on the day of, or day before, your trans-plant. He or she sleeps through the harvest anddoesnÕt feel anything during it. Doctors use a nee-dle to remove a small amount of marrow from thedonorÕs hip bones. The donor leaves the hospitallater that day or the next and may feel a little sorein the hips, as if he or she fell while roller-blading.

Peripheral stem cell donor: The donor ishooked up to an apheresis (ay-fur-EE-sis) machinewhich draws blood from one arm, filters it to col-lect stem cells, then returns the leftover blood tothe other arm. The procedure is painless but takesseveral hours and may be repeated a few timesbefore your transplant to get enough cells. Thecells are frozen until the day of your transplant.

Umbilical cord donor: After a baby is born, the umbilical cord is disconnected. Stem cellsinside the cord are collected and stored untiltheyÕre ready to be used by someone like you.

Donating to yourself: Your bone marro w stem cell harvest will take place before your

chemotherapy/radiation therapy since thesetreatments destroy the cells in your marrow.

”I wrote a letter to mydonor to thank him for giving me his bone marrow. I call him my‘Blood Brother.’ We stillstay in touch.”

Age 61/2, 4 years after transplant

When Cristina found out that her half-sister Antonia’s marrowwas a good match, she was veryhappy. But Cristina also felt badabout putting Antonia through the harvest. Antonia said, “You’remy sister—you don’t have to feelbad.” Antonia was a little ner-vous about the harvest, but shealso felt she had a very specialgift to give—the chance to helpCristina become healthy again.

Cristina’s Story

During Your Transplant26

The Transplant

Receiving Your CellsOn the day of your transplant, the donated stemcells will be given to you through your centralline. It takes close to an hour for the cells to dripfrom their IV bag into your bloodstream. YouÕllfeel no pain and can talk to family members,watch TV, or just rest. YouÕll be given medicationsbefore the transplant to prevent serious reactionsfrom occurring. Nurses and doctors will watchyou closely to treat any reactions you may have.

How Your Body RespondsReactions during transplants are not very common. Taking deep breaths might cause youto cough due to tiny particles in the donated mar-row moving through your lungsÕ blood vessels.Sometimes patients get chills, a mild fever, or askin rash. Your urine may also turn pink or re dfor a few days, which is normalÑyour bodyÕsjust getting rid of extra red blood cells that mayhave been mixed in with the stem cells.

If youÕre receiving marrow or stem cells that were frozen (because you donated them earlieror they were shipped from another state or coun-try), you may notice a smell or a taste similar togarlic. This is a common side effect. ItÕs causedby the chemical that the stem cells were stored into keep them healthy for you. The taste or odorlasts a day or two. Your nurse can give youmedicine if it makes you feel nauseous.

It may surprise you that kids often say their bone marrow transplantor rescue is anticlimacticÑnot that big an event compared to otherprocedures theyÕve had. Maybe thatÕs because BMTs and SCTs arenÕtsurgeries. TheyÕre infusions (slow injections), similar to blood transfu-sions. HereÕs what to expect on your transplant day and beyond.

T-Day ThoughtsKids remember their trans-plant day in different ways.

“My brother wasmy donor. Nowmy family cele-brates my trans-

plant day as a holiday. We call it ‘TogethernessDay.’ Since that day, mybrother and I will always betogether— no matter what.”

Age 9, 11/2 years after transplant

“When I got mycells, the taste in my mouth wasbad. I ate mint

candy to cover it up. Thecandy really helped.”


Me and My Marrow 27

The WaitOnce the donated cells have drippedinto your bloodstream, theyÕll make theirway to their new home in the center ofyour bones. Then the waiting begins.On average, it takes about 14 to 30 daysfor your new marrow to engraft, orbegin producing new blood cells. Thismust happen before you can leave thehospital. Doctors will test your bloodevery day to check your progress.

It may seem like it takes forever foryour new marrow to engraft. You maynot notice much change in the way youfeel from day to dayÑyou might take asmall step forward or backward or haveno change at all. The slow recoverypace can be frustrating. Though itÕs im-portant to have goals for your recovery,try to take one day at a time, and not focus too far into the future. When youdo reach your recovery goals, celebrate!

Day 0,and BeyondFrom this point on, your days will prob-ably be referred to by numbers. The dayof your transplant is considered Day 0.Although your marrow may engraft assoon as Day 14, itÕs not unusual for thisto happen after Day 30. You may stay in the hospital even longer if you expe-rience complications.

The first 100 daysÑor 3 monthsÑafteryour transplant are the most criticalbecause it takes at least that long foryour bone marrow to build its immune(infection-fighting) system. During thistime youÕre at the highest risk for com-plications that will affect your recovery.(To read about the most common trans-plant complications, turn the page.)

Possible Complications

If you’ve been hospitalized for a longtime and are feeling restless, youmay be able to go for walks in thehalls at night. It’s less crowded then,so exposure to germs is less likely.

InfectionYour bone marrow was destroyedby chemotherapy/radiation. Untilyour new marrow is able to produceinfection-fighting white blood cells,your body won’t be able to defenditself against germs. Infection can bethe most serious complication rightafter your transplant.

• You may begin protective isolationif you haven’t already. Your contactwith people will be limited to yourdoctors, nurses, and a few visitors.• Fevers are a sign of infection. They are very common. If you de-velop one, you’ll be given antibioticsto fight the infection. • Bathe daily to help remove germsfrom your skin. Hand-washing is stillthe best way to prevent infection.• Good oral care will keep mouthsores from becoming infected.• Fresh fruits and vegetables willbe eliminated from your diet sincethey may contain bacteria. All yourfood must be thoroughly cooked.

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Most complications are due to treatment you received before trans-plant or drugs given to prevent side effects. Here are some problemsthat delay recovery and what you may be able to do to prevent them.

Acute GVHDIf you received your own marrow or cells donated by an identical twin,you won’t have to worry about thiscomplication. But if your cells weredonated by another person, there’s achance you’ll experience some formof GVHD, or “graft-versus-host disease.” GVHD occurs when thedonated cells attack your body cellsbecause they are different. The donorcells usually target the skin, liver, andintestines. You may develop a rash,stomach pains, vomiting, diarrhea, or jaundice—yellow skin or eyes.

• Medications will be given to stopthe donated cells’ attack. But thesedrugs also prevent your body fromfighting off other intruders like germs,so your infection risk will be greater.

Bleeding Since you received high doses of chemotherapy/radiation, yourbody’s platelet count is low. Untilyour new marrow is able to producemore platelets, you can bleed easily.

• You’ll get platelet transfusions tohelp your blood clot. • Your nose may feel itchy or dry,but resist the urge to touch it. If youmust blow it, do so gently—it willbleed easily and the flow may behard to stop. • Don’t worry if you see blood inyour urine, stool, or vomit. That’s justa sign you need another platelettransfusion.

Going to the ICUIf you need more—or different—carethan the BMT unit can provide, you’llgo to the ICU (Intensive Care Unit). It’sin a different area of the hospital witha different team of caregivers.

• This move will make you betterfaster. The ICU and BMT doctors willwork together to help you recoverand return you to the BMT unit assoon as you’re able.

Graft FailureMost often, stem cells engraft andstart to make new blood for you.

• If there is a problem and they don’tengraft, you may receive anotherinfusion of cells.

Me and My Marrow 29

Caps or Hats Hair takes up space, so hats orcaps that you wore before youlost your hair may be too bignow. If you buy a new hat,keep in mind that your hairwon’t be there to cushion yourhead, so check the hat’s insidefor scratchy seams. Hats madefrom natural fibers like cottonare most comfortable. You maywant to have a few differentstyles for different occasions:dress, play, sleeping (withouthair, your head gets cold),and protection outdoors (makesure the hat covers your entirehairline—down the back ofyour head).

Even if you expect your appearance to change as a result of your treatment,it can still be a shock when this actuallyhappens. Give yourself time to adjust tothe changes. It may not be easy at first,but remember: although these changeswill be with you for a while, they prob-ably wonÕt last forever.

Hair loss is often the most difficultbody change to accept. Whether youwear a head covering is up to you.Many kids experiment with differentlooks to find whatÕs most comfortablefor them. Here are some you maywant to try.

Physical ChangesThe inside of your body has been going through many changes during your treatment. YouÕre probably experiencing changes on theoutside as well. For some kids, hair loss or weight loss (or unwantedgains) are especially upsetting. Here are some suggestions for whatyou can do to look good and feel better at this time.

Hip Headgear

30

Going NaturalYou may feel best withoutany head covering at all.That’s fine, but when you’reoutside you’ll still need somekind of protection. Hairkeeps your body from losingheat, so in colder weatherpull on a hat or head scarfto keep you warm. Your hairalso protects your scalp fromthe sun’s rays (which can be harmful even on cloudydays), so wear a hat anduse a sunscreen with an SPF(sun protection factor) of atleast 15. This is especiallyimportant if you are at riskfor GVHD because the suncan activate GVHD or makeit worse.

Scarves and BandannasYou can learn one tying technique and change fabricsto suit different occasions. To tie a basic bandanna: folda bandanna or square scarfin half to make a triangle.

Place the scarf on your headwith the point of the trianglein back, then tie the two endsat the back of your neck.

For a different look, try wear-ing the knot on the side, oradd a hat over the scarf.

Wigs If you want to get a wig, it will help to take photos ofyour former hair style fromthe front, side, and back.Also take a small sample ofyour hair to the store if youwant the wig’s color to matchyour own—or you mightwant to take this opportunityto try a different hair coloror style. If possible, have thewig cut and styled whileyou’re wearing it.

When you wear a wig, air can’t reach your scalp.Your head may perspire,making your scalp itch orfeel hot. If this happens, trywearing a small cloth capunder the wig to absorb theperspiration.

Looking Good!These kids made the best oftheir changing appearance.

“For Halloween,the kids on myunit and I paint-ed our heads

with pictures of pumpkins,ghosts, and candy cornjust for fun. When my hair started to grow back,I wore colored hair mas-cara, pretty earrings, anda little blush, which mademe feel better. ”

Age 13, 1 year after transplant

“My medica-tions make mebloated, and Ihave unwanted

hair. When I look in themirror, I remind myself,‘It’s only temporary.’”


A Weighty IssueCertain medications that are part of your treat-ment can cause your body to hold onto extrafluids, making it swell. Other drugs may makeyou hungrier than normal, so you eat more and put on extra pounds. Or, you may have theopposite problemÑa lack of appetite that causesyou to lose weight and not look yourself.

Although your appetite and body size shouldreturn to normal once your treatment is over,until then you may worry about your appearance.If your clothes no longer fit, here are some sug-gestions for keeping you comfortably in style:

• Loose shirts or drawstring pants can adjust toyour changing size. If you add a few items like theseto your wardrobe, you can even share them witholder or younger siblings.

• It can be expensive to get clothes to fit your newshape. Instead of buying them new, check out second-hand clothing stores or trade clothes with friends.

You’re Still You!Although you may feel a little awkwardaround others at first, donÕt let the changes inyour appearance make you withdraw from theworld. Remember: you’re still you inside! Thequalities that other people like and admire iny ou Ñyour friendliness, your sense of humor,your talentsÑdonÕt go away!

Ke eping BusyTV, video games, and crossword puzzles can get old. Think youÕverun out of things to do while in the hospital or stuck at home?Think again! Here are 25 ideas sure to make time fly!

1 “I painted my windows with pictures of everyonein my family. I felt happy whenever I looked at them.

One day when I was feeling sick, I painteda sad face. It made me feel better to getout of bed and do something.”


2 Tape-record a letter to your class at school,your best friend, or siblings at home.

3 Make a snack and watch videos of yourfamily.

4 Organize a drawing contest for the kids onyour unit. If youÕre in isolation, ask a nurse toannounce the theme, such as the ultimate cake,athletic shoe, or evening gown. Then ask thenurse to collect the drawings, and pass themaround for everyone to see and vote on. Themost creative ideas win!

5 Imagine a dream vacation, sporting event, orconcert youÕd like to go to or participate in. Drawyour ideas, write them down, or simply escape tothese places in your mind whenever you want.

Turn your windows into works ofart with washable paint. Designthem to look like stained glass orpaint a portrait of a precious pet.

33

6 Make friendship bracelets withstring and beads and hand them out toother kids on the unit.

7&8 “My aunt gave me a magic set, and I learned to do tricks. The doctorsand nurses would ask for a new trickevery day.

“I also play the piano, so I brought a key-board to the hospital. The doctors would askif I could learn certain songs to play for them.

Making people around me happymade me feel happy in return.”


9 Make a list of your friendsÕ and relativesÕ birthdays, then create cards to send them.

10 Start a scrapbook or photo albumor add to one you already have.

11Make a cheer-up chart. Write downat least one good thing that happens toyou each each day. Some days it may beas silly as ÒAt least an elephant didnÕt siton me today!Ó

12 Talk to new patients and try to help them out. Fill them in on yourhospital and the staff.

13 Write a fan letter to yourfavorite singer, actor, athlete, or artist.Or if youÕve met kids you admirewhoÕve been through a transplant,drop them a line.

35

A Bright Idea Cristina liked to keep busy during her 6-week stay in thehospital—it helped pass thetime more quickly. When hernurses asked her to make deco-rations for the hallways, shegladly agreed. “First they askedme to do something to go withspring, so I drew bunnies andcolored eggs. Later they wantedsomething summery,” so Cristi-na drew lots of smiling suns.Even though she couldn’t go outin the halls, the hospital staffand visitors were cheered byCris-tina’s art work—and thatcheered Cristina!

Cristina’s Story14 Start a mini-paper for your transplant unit.Interview other kids on the floor or ask them tosubmit short write-ups about themselves or sto-ries theyÕve written for fun. Arrange the ÒarticlesÓso that they fit on just a few sheets of paper andglue them down, or use a computer if you haveaccess to one. Add illustrations if you like, thenphotocopy your newspaper and hand it out.

15 "When I got home from the hospital I startedmaking a favorite craft again . I attach silk flowersto the tops of pens and put them in clay pots that I paint. My mom noticed that syringe caps were the perfect size to hold a pen upright, so we gluethe caps in the pot and surround them with papergrass. We started selling the pens to stores anddonate a portion of the money we make to the

Leukemia Society. So far we'vedonated $200!


16 Start a collection. Stamps, pencils, stickers,or postcards are some ideas. Let your friendsand family know about your collection andinvite them to help you add to it, but challengethem to do it by spending one dollar or less.

After Your Transplant36

17 Sketch things or people in your room.

18 Start a diary or journal or add to one you already have. HereÕs onequick writing idea: using only 3 words,describe your day, the weather, a per-son, or your mood.

19 &20 “I got a computer hook-up to my classroom while in the hospital. So that we always had something fun to talkabout, I asked a new question every day,like: ‘Today is National Eat Whatever YouWant Day. What would you like to eat?’

“We also made a video for my class sothey’d know what I was going through. They

videotaped parties that I couldn’tgo to and sent me the tapes.”

Age 11, 7 weeks after transplant

21 If your friends canÕt visit, suggestthat they get together at one friendÕshouse and take turns talking on thetelephone with you. If your hospitalhas provided your family with a videophone, maybe your friends can meet atyour house and call you from there .

22 Compose a poem or songinspired by a powerful emotion youÕrefeeling today.

23 Catch up on your schoolwork.Learning is your job. You have a futureto prepare for, so donÕt fall behind!Push yourself so that when you goback to school, youÕll be on target.If your transplant center has a hospitalschool, try attending, or form studygroups with other kids in your unit.

24 &25 “My mom painted pictures on my fingernails. I had mice,bears, flowers, and different-colored ying-yang symbols.

“She also brought in Easter decorations, andwe decorated my room. We evendyed eggs and had an egg hunt!”


ÒOne friend who wrote me said that we should starta story and send it back and forth, each adding aparagraph,Ó Cristina says. ÒI always looked forward togetting mail from her because it was a fun activity.Ó


Leaving the Hospital

Stepping OutIf youÕll be staying in the hospital for a long time, you may be allowed to take short trips away during the day before youÕre actually discharged.YouÕll probably have to wear a mask for protec-tion and may even need to bring along your IVpole. The sights, sounds, and smells outside thehospital may be startling at first, especially if itÕsbeen a while since youÕve experienced them.These trips can also be exhausting, but theyÕregreat practice for when you go home for good.

Rules for ReleaseHospitals have different rules for when transplantpatients can be discharged to go home. Yourwhite blood cell count will need to be highenough so that your body can begin to defenditself against everyday germs. The doctors andnurses will probably want you to be off antibioticsfor a few days, and have had no fevers, nausea,vomiting, or diarrhea for several days in a row. If youÕre having trouble taking your medicationsby mouth, doctors may delay your discharge.

ÒI wanted to leave the hospital, but I was also kind of nervous.Ó says Cristina. ÒI thought that IÕd get sick againand would have to go back to stay for a longer time.Ó

The day youÕre finally able to leave the hospital may be filled withmixed emotions. YouÕve probably waited for this event for weeks butnow may be a little nervous. You might suddenly worry whether youare ready to be out on your own. ItÕs a big step, but your doctors areletting you take it because theyÕre confident youÕre healthy enough togo. Be proud of yourselfÑ youÕve reached a major milestone!

" My goal was to get out of the hospital so I couldgo see Star Wars: EpisodeI when it first came out.I still had to wait a weekafter I got home, wear amask, and go when thetheater wasn’t as crowd-ed, but it was great!”

Age10, 1 month after transplant

Clinic VisitsEven after your discharge, your recoveryis not yet complete Ñyour bone marro wis still not ready to meet the require-ments of daily life. YouÕll have to makefrequent trips back to your hospitalÕstransplant clinic so doctors can examineyou and treat any problems that mayarise. (If you live far from your hospital,youÕll probably stay in a nearby hotel orRonald McDonald House before goinghome so you can return to the cliniceasily. After a few weeks, youÕll be ableto go to a clinic closer to your house.)

At first, youÕll have to visit the clinicdaily or every other day. The time be-tween your visits will gradually increase.Eventually youÕll have checkups justonce or twice a month, then once ortwice a year. Occasionally patients needto return to the hospital for short stays if serious problems develop.

Healing at Home Once youÕre home, it may take severalmonths before youÕre ready to return to normal activities. Keep reaching foryour goals, but also give yourself timeto heal. At first youÕll have to avoidcrowded indoor places like malls,movie theaters, and churches or syna-gogues. You may be able to visit theseplaces when fewer people are there Ñweekday mornings instead of weekendafternoons, for example. Your restrictionsmay be different than those of other kidswho had their transplant the same timeas you. YouÕre recovering at differentrates Ñtry to be patient.

For a while, youÕll probably have lots of medications to take. To keep track ofthem, make a chart showing how muchof each you need and what time youshould take it. ItÕs important not to missa doseÑyour recovery depends on it!


1Eat whenever youÕre hungryÑeven if itÕs not mealtime. If a certain meal, likebreakfast, appeals to you more than oth-ers, make it the largest meal of the day.

2 Eat even if you don’t feel like eating,and even if youÕre on IV nutrition. Yourstomach may have shrunk during yourtransplant. You need to stretch it outand teach your body to eat again.

3 When you do eat, pick protein-richfoods like cheese, yogurt, fish, and eggs,which help the body repair itself. Tokeep your weight up, choose foods anddrinks high in calories. (Give nutritionalsupplement shakes like Ensure a try.)

4 On days when you have a largerappetite, eat more to make up for daysyou ate less.

5 Vary what you eat. Try new foodsand recipesÑthings you never likedbefore may taste good now. Ask yourdietician for a list of good foods andrecipes to try.

6 When you donÕt have an appetite forsolid foods, try cool liquids. Your bodyneeds water to function properly, sodrinking fluids like shakes, fruit juices,sports drinks, or popsicles will help yourbody get the water it needs. HereÕs adelicious, nutritious shake to try:

Berry Fluff• 1/2 cup frozen yogurt, berry-flavored • 2 ounces cranberry juice• 1 tablespoon wheat germCombine ingredients and blend.

Eats and TreatsYour diet is an important part of your recovery. The right kinds of foods can help you stay strong and heal faster. Getting enough nutrients is also important because kids your age are often goingthrough a growth spurt. If the side effects of your treatment havecaused your appetite to shrink, try these 10 taste-tempting tips.

Me and My Marrow 41

7 Eat snacks anytime. A few bites or sips ofhigh-calorie foods or liquids every hour will keepyour calorie intake up. Snacks can also surpriseyou by making you want to eat more. Try thesetasty treats: cheese and crackers, chocolate milk,muffins, cereal, and pizza. HereÕs another supersnack to sample:

Peanut-Butter Balls• 1 teaspoon vanilla extract• 1 tablespoon nonfat

instant dry milk• 1 teaspoon water• 1 teaspoon pasteurized honey• 5 tablespoons peanut butter from a freshly opened jar Mix first 3 ingredients together. Then add honey andpeanut butter, stirring slowly. Form into balls and chill as candy snacks or spread on crackers as snackers.

8 Experiment with eating in different places.A meal may taste better if served as a picnic onthe patio or your family room floor.

9 Exercise an hour before mealtime Ñit mayhelp make you more hungry. (Check with yourdoctor to make sure he or she approves.)

10 Boost a foodÕs calorie or protein contentwith tasty add-ins. Here are some to try:

Adding Calories

Granola (without driedfruit): Sprinkle on icecream or oatmeal. Add tocookie or muffin batters. Ice cream/frozen yogurt:Sandwich between cakeslices or cookies. Blendwith fruit juices or soda. Honey or jam: Drizzle oncereal, toast, or shakes.Butter: Add to noodles,rice, and sandwiches.Whipped cream: Use onhot cocoa and desserts.

Adding Protein

Peanut butter: Spread on muffins, waffles, orpancakes. Swirl throughmilkshakes or ice cream.Cheese: Melt on hot dogs,hamburgers, sandwiches,or tortillas. Grate intosoups, mashed potatoes,and vegetables.Meats: Wrap in pie crustor biscuit dough to makea turnover. Sprinkle intosoups, omelettes, orbaked potatoes.

“All of a sudden I wanted to try things I’d never eatenbefore—like an olive loaf I saw in the store one day. I usually wanted spicierfoods than I ate before.”


Food for ThoughtKeep these points in mindwhen it’s eating time:

Think before you drink—don’t share straws or eat offsomeone else’s fork or spoon.

If food that might be touch-ed by others is passed at ameal, take your portion first.

As food is being prepared,anyone tasting it should use a separate, clean spoon.

All foods must be wellcooked. No cold cuts, salads,or fresh (or dried) fruits or vegetables.

Foods prepackaged in indi-vidual serving sizes are ideal!


Family Matters!Your whole family had to adjust to you being away at the hospital,and maybe a parent being there with you. If you were gone for awhile, it may take time Ñand patience Ñto get used to being togetheragain. The good news is, many kids say their transplant brought themcloser to their family. These pages can help you do the same.

Sibling StrugglesBrothers and sisters can sometimes bejealous of the attention you get, even ifthey understand why youÕre getting it.They may also be upset that you getspecial privileges like different things toeat or not going to school. At the sametime, they might feel guilty that theyÕrewell and can do fun things while youÕrestuck at home. All of these emotionsmay make them unsure about how

to act. They might be extra-nice or getupset for silly reasons. These tips mayhelp smooth the stormy times:

• Show family members you appreciate them with smiles, hugs, and kind words. Playgames with brothers and sisters or offer tohelp them with schoolwork.• If a sibling’s actions are bothering you, ex-plain how you feel without getting angry andlet your sibling do the same. Then each shouldlisten calmly to what the other has to say.

Me and My Marrow 43

“Some medicines make mecrabby —I don’t want to talkor have anybody talk to me.I tell people when I feel thatway so they’ll come back ata better time.”

Age 10, 1 month after transplant

Parent ProblemsYour transplant has been difficult for your parents.TheyÕve watched you endure painful procedure sand may have felt unable to comfort you. Nowthat youÕre home, they may be extra-cautiousabout your health Ñyou might think theyÕre over-protective. Moms or dads may also fight more dueto stress or being overly tired themselves. Asyou recover, theyÕll start to relax and get better,too. Here are some other things you can do torelieve the tension:

• Do your part to care for yourself. Take your medicineand eat when you can to take strain off your parents.• It’s important to tell parents about your aches, ills, orextreme fatigue. So that they don’t overreact, be specificwhen describing your symptoms. For example, try torecognize whether you’re really tired or just very bored.

Getting Along AgainThere may be days when you realize you’re theone overreacting or lashing out at family unfairly.

• Remember, medications may cause moodiness.• It’s also common to feel angry at people who arewell. You may be taking your frustrations out on othersbecause you’re anxious to get better. If you do blowup, try to calm down before the argument gets out ofhand. Take time to cool off; then apologize if you’vesaid things you’re sorry about.

Sometimes good things can come out of bad. Therough times your family may be going throughcan actually improve your relationships. As youtry to understand each otherÕs feelings and talkthrough your problems, you may all grow closer.

ÒMy siblings either didnÕt talk to me or they babiedme,Ó Cristina says. ÒWhen they were too nice, I wantedthem to act more like normal. But now I wish it wasback to that,Ó she laughs.


Back to SchoolEasing into ItYour doctor will let you know whenyou can return to school. If youreceived your own marrow or stemcells, you may be able to go back 3 to6 months after your transplant. Other-wise, it may be a year before you canreturn. Until you do, a tutor can helpyou at home. If classmates can some-times bring you schoolwork, itÕll helpyou stay in touch while youÕre away.

When you are ready to return to class,you may start out going a few hours a day, and as you feel stronger, workyour way up to full-time. Your parentsshould let your teachers know thatyou may need to have snacks or restperiods during the day, take medica-tions, or use the bathroom more often.

Fitting in AgainReturning to school can be exciting, butyou may also worry that classmates willtreat you differently. It can take a littletime for things to feel normal again. If you look differe ntÑhave lost hair orweight or are wearing a maskÑsomekids might avoid you because they donÕtknow what to say or how to act. Theymay need you to break the ice. First,make sure you havenÕt withdrawn fromthem out of embarrassment or fear ofwhat they might thinkÑclassmates mightmistake your nervousness as beingunfriendly. It may also help to explainyour transplant to them and answerquestions they may be curious about.

Talking about your transplantcan clear up misunderstandingsclassmates may have.

Friends Forever?If youÕve been away for a while, it might seemas if some friends have moved on to new inter-ests or friendships while you were gone. DonÕtassume this is soÑgive yourselves a chance toget comfortable with one another again. Some-times friends are worried that things will changebetween you, when they just want everything tobe the same. Reassure them that youÕre still thesame person. Once they realize this, theyÕll usu-ally relax and treat you like before. Some kidssay they make new friends after their transplant,and that their new friends are better buddiesthan they had before .

What to Say You may wonder what youÕll say about yourchanged appearance to friends or others whoare curious. Try explaining it straight out: ÒThemedicine IÕm taking for my transplant makes myface bloated, but IÕll return to normal after I stoptaking it.Ó Some kids say using humor helps putclassmates more at ease. If youÕve met other kidswho have been through a transplant, you mightask what approaches worked for them.

Keeping UpChemotherapy and radiation therapy can sometimes affect your memory, handwriting, or ability to concentrate or organize things.Some kids say math is more difficult for themsince their transplant. You and your parentsshould meet with your teachers to set up studygoals. When you reach your goals, youÕll feelgood about yourself and your schoolwork.

School SupportThese kids tell what it was liketo return to school and friends.

“Everyone wore hatsand bandannas toshow their support.Usually hats aren’t

allowed at my school, but aslong as I wanted to wear one,my classmates could, too.”


“At first, kids thoughtthey’d get sick if theytalked to me. I toldthem they couldn’t

catch my disease. Then theyloosened up.”


“It's easier to have a good relationshipwith someone ifthey've gone through

the same thing. Our hospitalhelped us contact another girlwho also had cancer. We met,and we're a lot alike!”


Late EffectsSome complications donÕt develop untilmonths or even years after a transplant.

Inability to fight infections: It cantake a year or two for your marrow’sinfection-fighting system to fully recover.Some patients continue to experience serious infections until then.

Chronic GVHD: GVHD that appears afterDay 100 is called “chronic.” You can developchronic even if you never had “acute.” (Re-member, if you received your own cells,GVHD won’t occur.) Symptoms of chronic are:skin that thickens or darkens; stiff joints; mus-cle shrinkage; jaundice; dry, burning eyes;and mouth sores. To treat chronic GVHD, youneed to return to infection-prevention routinesand go back on drugs to keep your newmarrow from attacking your body organs.

Growth problems: Many kids who hadradiation therapy experience some delay ingrowth. You may be given growth hormones,which can sometimes help you catch up.

Dental problems: If you didn’t haveyour adult teeth before your transplant, theirdevelopment may be delayed due to radia-tion therapy. Tooth decay and gum diseaseare also common, so see a dentist regularlyand don’t forget good oral hygiene!

Cataracts: Cataracts are cloudy spots onthe eyes that blur vision. They can result fromradiation therapy and develop 3 to 6 yearsafter a BMT. If you notice a change in theway you see, tell a parent. Cataracts can beremoved to restore your eyesight. Relapse: The return of your original disease is called “relapse.” It’s common forpatients to worry that they’re having arelapse whenever they feel a little sick. Astime passes, though, you’ll worry less. Witheach year you remain healthy, your chancesof being cured for good are better and better.

A+ Attitude Lasting problems can be frustrating. If you are experiencing one or more of these late effects, try to focus onwhat you can controlÑsuch as mouthcare , nutrition, and exercise Ñand leaveother worries to your doctors.

There may also be days you feel sogood youÕre tempted to skip yourcheck-up. Remember: itÕs important togo! If complications are starting to form,doctors need to treat them while theyÕresmall to keep them from getting worse.

Focus on the FutureFor many transplant patients, it takes a year or more to recover bothphysically and emotionally following their transplant. Even after a yearis up, your life may not completely return to the way it was before .Here are some issues you may be dealing with.

Me and My Marrow 47

ÒI love my life now!Ó Cristina says. ÒI used to be afraidof what other people thought of me. Now I realizethat life is short, so you have to live it fully and dowhat you feelÑdonÕt let anybody stop you.Ó

How You’ve ChangedKids who have been through a bone marro wtransplant often think they look at life differentlyafterwards. Many feel they make the most ofeach day now and donÕt waste time beingunhappy about unimportant things. Others saythe experience made them mentally strongerand able to handle tough situations. If a problemarises, they have more confidence they can overcome it.

WhatÕs your outlook on life now? Can you seehow you may have benefited by your transplantexperience? Did you develop or discover personaltraits that youÕre proud of? We hope so! To learnhow you can share your new insights and experi-ences with others, turn the page.

Bouncing BackIf you just haven’t felt like your normal self since yourtransplant, try getting involvedin activities that help you feelgood about your skills.

Some kids take dancing lessons or a martial art likekarate or judo to improve theirconcentration and coordina-tion. Others discover that play-ing their favorite sport helpsrestore their strength and self-confidence. A new hobby likepainting or playing a musicalinstrument can help you devel-op new interests and pride.

Just don’t forget: as a trans-plant survivor, you alreadyhave a lot to be proud of!

Your transplant experiencemight make you want to de-velop new talents or try thingsyou’ve never tried before.


Where Is She Now?These days, CristinaÕs favorite activitiesinclude cheerleading and acting andsinging in plays. ÒThe cheerleadinggives me a lot of exercise and itÕs really fun,Ó she says, Òbut I love beingup on stage singing in front of every-body. Before I had the BMT, I wouldhave been shaking. Now IÕm not even nervous!Ó

Cristina also finds great satisfaction in visiting other kids who are goingthrough BMTs. ÒEvery Christmas since I got well, we go to the hospital andgive out little gifts like fun pencils, word searches, decks of cards, and littlegames,Ó Cristina says. ÒI like seeing kidssmile. They just look so much happierafterwards. It makes me feel better, too!Ó

Get Better, Give Back!

What You Can DoWould you like to help out other kidsthe way the kids in this book helpedyou? Here are some suggestions forsharing your time and talents:

• Start a pen-pal program at your school.Each of your classmates can write to a different transplant patient.• Organize a toy collection for the kids atthe nearest transplant center.• Write cards or make decorations to sendto transplant patients at holiday time.• Attend or volunteer to be a counselor at a summer camp where you’ll meet other kidswho are former transplant patients.

• Hold a fundraiser in your town to benefittransplant patients.• Visit http://www.fujisawa.comor write to the address below and tell usabout your transplant experience. We’llpost as many comments as we can on thissite so that other kids can learn from youwhat to expect. Let us hear from you!

Fujisawa Healthcare, Inc.Medical Information Dept.

Parkway North CenterThree Parkway North

Deerfield, IL 60015-2548

Cristina and her cheerleading squad

Cristina at Antonia’s

wedding Cristina rock climbing

Documents

Fujisawa Healthcare, Inc. andmy marrow · me andmy marrow A Kid’s Guide to Bone Marrow Transplants By Karen Crowe Illustrated by Norm Bendell Fujisawa Healthcare, Inc