About Your Stem Cell Transplant: Information for Pediatric Patients ...

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PATIENT & CAREGIVER EDUCATION About Your Stem Cell Transplant: Information for Pediatric Patients Welcome to the Claire Tow Pediatric Inpatient Unit (M9) at Memorial Sloan Kettering (MSK). This guide contains information about your inpatient stay and what to do after discharge. In this guide, the word “you” refers to you or your child. When you’re admitted to the inpatient unit, a countdown period of 5 to 10 days starts. Day 0 is the day of your transplant. During the countdown period, you’ll get cytoreductive therapy, including chemotherapy, radiation therapy, or both. The days after your stem cell transplant are counted up (Day +1 is the first day after your transplant). Your MSK healthcare team is here to provide care and emotional support to both you and your family throughout your treatment. Don’t be afraid to ask the same question more than once. Transplant information is hard to understand. Most people need to hear things a About Your Stem Cell Transplant: Information for Pediatric Patients 1/33

Transcript of About Your Stem Cell Transplant: Information for Pediatric Patients ...

PATIENT & CAREGIVER EDUCATION

About Your Stem CellTransplant: Information forPediatric PatientsWelcome to the Claire Tow Pediatric Inpatient Unit (M9)at Memorial Sloan Kettering (MSK). This guide containsinformation about your inpatient stay and what to doafter discharge. In this guide, the word “you” refers toyou or your child.

When you’re admitted to the inpatient unit, a countdownperiod of 5 to 10 days starts. Day 0 is the day of yourtransplant. During the countdown period, you’ll getcytoreductive therapy, including chemotherapy,radiation therapy, or both. The days after your stem celltransplant are counted up (Day +1 is the first day afteryour transplant).

Your MSK healthcare team is here to provide care andemotional support to both you and your familythroughout your treatment. Don’t be afraid to ask thesame question more than once. Transplant informationis hard to understand. Most people need to hear things a

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few times before they understand completely. We knowyour journey will be difficult, but we’ll be by your sideevery step of the way.

Your Transplant TeamA medical team specializing in pediatric cancers, blooddisorders, immune disorders, and bone marrow failuresyndromes will care for you throughout your treatment.Having a team working together to care for you helpsmake sure all parts of your care are addressed. Below isa description of our team members.

Physicians (doctors)Attending physicians are experts in pediatrics,hematology-oncology, immunotherapy, and stem celltransplantation. The doctor you see in the PediatricAmbulatory Care Center may not be the same one whotakes care of you while you’re inpatient. Transplantdoctors take turns working in the inpatient unit. Theyusually work in the inpatient unit for 1 or 2 weeks at atime. During that time, they manage all the transplantpatients 24 hours a day. While you’re inpatient, theinpatient attending physician will be in charge of yourday-to-day care. If any major problems come up whileyou’re in the hospital, the inpatient attending physicianwill discuss them with your primary transplant doctor.

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Once a week, all the attending physicians meet todiscuss your progress.

Fellows are pediatricians doing training in pediatrichematology-oncology. They work closely with the BMTattending physician to manage your care. The inpatientfellow changes every 3 to 5 weeks.

Advanced practice providers (APPs)APPs are a group of medical providers that includephysician assistants (PAs) and nurse practitioners(NPs). They work with the attending physicians tomanage your care. This includes doing physical exams,prescribing medications, and following your test resultsand progress. You’ll see them often, both in thePediatric Ambulatory Care Center before and after yourstem cell transplant and in the inpatient unit.

Pediatric bone marrow transplant nursecoordinatorsThese are registered nurses who coordinate the care ofall pediatric stem cell transplant patients. They workvery closely with you and the entire bone marrowtransplant team. They’re responsible for teaching donebefore, during, and after your stem cell transplant.They’ll help make sure you understand the reasons foryour treatment and details about your treatment beforeand during your inpatient stay.

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Registered nurses (RNs)RNs provide essential, critical bedside care. They workclosely with the physicians and support team to addressvarious aspects of your treatment, healing, and recovery.Throughout your treatment, your nurse will teach youabout many topics, including what medications you’retaking, why you’re taking them, how to care for yourcentral line, and much more. The same primary nursingteam will care for your during your whole inpatient stay.Your primary nurses build a close relationship with youand are able to notice small changes in your condition.

Research nurses and research APPsThese are registered nurses and APPs who work closelywith the clinical team on various research studies thatpediatric patients can participate in.

Nursing assistantsNursing assistants support the registered nurses withbasic bedside care, such as checking your weight andvital signs (temperature, heart rate, and blood pressure)every day. They can help you with bathing every day.

Clinical pharmacists

Clinical pharmacists are pharmacists who specialize inthe care of stem cell transplants. They accompany the

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team and help with specific medication questions. Aclinical pharmacist will meet with you before you’redischarged to talk with you about your medication dosesand when to take your medications.

Psychology servicesThe psychology team is made up of psychiatrists andpsychologists. They’re available to help you and yourfamily deal with the stresses of treatment. We considerthem an essential part of the transplant team and askthem to meet all patients and families during theirinpatient stay.

Rehabilitation medicine teamThe Rehabilitation Medicine team includes both PhysicalTherapists (PTs) and Occupational Therapists (OTs).They’re a huge part of your inpatient stay. They willwork with you and evaluate your needs to help you stayas active as possible.

Nutrition servicesThe nutrition services team has both outpatient andinpatient clinical dietician nutritionists. They’ll keeptrack of your weight and help make sure you get enoughnutrition before, during, and after your stem celltransplant.

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Pediatric gastrointestinal (GI) serviceThe pediatric GI service includes healthcare providerswho specialize in caring for children with GI problems. Ifyou have known GI problems before your stem celltransplant or develop new ones after your transplant, ahealthcare provider from the pediatric GI team will workclosely with other members of your care team todiagnose and treat your GI condition.

Pediatric pain and palliative care teamThe Pediatric Pain and Palliative Care Team (PACT) is ateam of doctors and NPs who support children andfamilies facing serious illnesses at MSK Kids. The goal ofpalliative care is to anticipate, prevent, and managephysical, psychological, social, and spiritual distresswhile helping patients and their families throughouttheir treatment. Palliative care is important and helpfulno matter how old a patient is, what stage of illnessthey’re experiencing, or whether their treatment isinpatient or outpatient.

The PACT respects your preferences, values, andcultural beliefs and encourages you and your family tobe active in making decisions about your goals and plansof care. The PACT will work together with all membersof your care team to ensure that you and your familyhave the support needed to live as well as possible.

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Environmental servicesMembers of the Environmental Service staff play animportant role in lowering your risk of infection bydisinfecting surfaces, cleaning the floors, bathroom, andair vents, and getting rid of trash. They’ll come to yourroom at least twice a day and when needed to keep yourroom clean.

Your Hospital RoomWhen you’re admitted to the inpatient unit, you’ll be in aprivate room. This is called protective isolation.

You can wear your own nightclothes or comfortableclothing, or you can wear a hospital gown. Please wearnon-skid footwear when you’re out of bed. Your nursecan give you hospital non-skid socks, or you can bring apair of slippers from home.

Protective isolation precautionsWhen you’re admitted to the hospital, you’ll be placedon protective isolation precautions to protect youfrom germs. This means that anyone in the room, otherthan you, is required to was their hands and wear amask and gloves. It also means you can’t leave the roomunless it’s to go to a test or procedure. You’re welcometo decorate your room, but you can’t have fresh flowersor plants while you’re in the hospital. They’re a source of

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bacteria and fungus.

If you get an infection such as C. difficile, you’ll beplaced on special contact isolation precautions. Ifyou get a respiratory infection, you will be placed ondroplet isolation precautions.

Your Daily RoutineRoundsYour health care team will meet every day to discussyour blood test results, fluid intake and output, vitalsigns, medications, how you’re responding to treatment.They’ll also determine your plan of care. This meeting iscalled rounds.

Early each morning, the APP caring for you will come inand examine you so they can update the team on yourphysical assessment during rounds. After your team hasdiscussed your plan of care for the day, they’ll come intoyour room and examine you. Getting up and dressedbefore morning rounds is helpful so you’re ready to talkwith the team when they arrive.

At times, the transplant process can be overwhelming.You and your caregivers can use the space in the back ofthis guide to write down questions you have beforerounds to help you remember what to ask.

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WeightYou’ll be weighed 1 to 2 times a day. Your care teamneeds to know how much you weigh before they domorning rounds. They’ll use this information to makeimportant decisions about your treatment. Most weightchanges during a stem cell transplant hospitalization aredue to fluid (water) gain or loss.

Vital signsYour vital signs (blood pressure, temperature, pulse,breathing rate, and blood oxygen level) will be checkedat least every 4 hours both during the day andovernight. No one likes being woken up, but thesemeasurements are important. If your vital signs change,you may need to be evaluated by your medical team.

Intake and outputYour care team will keep track of how much food andliquid you take in each day (both by mouth and throughyour IV line). They’ll also measure your urine, stool(poop), and vomit (throw up). Do not flush your urine,stool, or vomit down the toilet. Your nurse or nursingassistant will measure and flush them for you.

Your caregiver should always wear gloves whenhandling your urine, vomit, or stool. Some chemotherapymedications are carried out of your body in your urine,

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and viruses and bacteria can be in urine and stool.

Blood testsYou’ll have blood drawn for testing at least daily andsometimes more often. Your blood will be drawn fromyour central venous catheter (CVC). Usually, your bloodwill be drawn at night so your test results are readywhen your doctors round in the morning.

The blood tests that are done most often are:

Complete Blood Count (CBC). This test thatmeasures the cells that make up your blood: whiteblood cells, red blood cells, and platelets.

Basic Metabolic Panel. This test measures yourelectrolyte levels, kidney function, and glucose (sugar)levels.

Hepatic function. This test measures levels of totalprotein, albumin, bilirubin, and liver enzymes.

Epstein-Barr virus (EBV), cytomegalovirus(CMV), and adenovirus are viral infections that wecheck for at least weekly. because they’re sometimesseen in patients after a stem cell transplant.

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TransfusionsBased on the results of your blood tests, your team willdecide if you need a red blood cell or platelettransfusion.

Your results will be below normal until the stem cellsstart to grow in your bone marrow. After you get yourstem cell transplant, your family members may be askedto donate red blood cells, platelets, or both.

Your blood carries oxygen and nutrients to all the cellsin your body. Blood cells also fight infection and controlbleeding. Blood is made up of 4 parts: red cells, whitecells, platelets, and plasma.

Red blood cells carry oxygen from your lungs to yourcells. They also bring the waste product, carbondioxide, back to your lungs where it’s exhaled.Hemoglobin shows how much oxygen red blood cellscan carry and is the value we look at to see if youneed a red blood cell transfusion.

White blood cells fight infection and help youdevelop immunity. There are 3 types of white bloodcells: granulocytes, monocytes, and lymphocytes.Each type has their own way of helping your bodyfight infection. You’ll hear the term ANC, whichstands for Absolute Neutrophil Count. Your ANC is

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the total number of neutrophils in your white bloodcell count. The lower the ANC, the higher the risk ofinfection.

Platelets are colorless cells whose main job is tocontrol bleeding. When your platelet count is low,you’re at risk for bleeding. Depending on your plateletlevel or symptoms, you’ll be given a transfusion.

Plasma is the liquid part of blood. It carries water,nutrients, minerals, and hormones throughout yourbody. it also carries various waste products to yourkidneys so they can be removed from your body.Plasma also contains proteins that help your bloodclot. If these proteins are low, you may get atransfusion of fresh frozen plasma or an infusion ofalbumin to replace them.

Caring for yourself during transplantShoweringKeeping your body clean is very important. Showerevery day using Hibiclens . Hibiclens is a skin cleanserthat kills germs for up to 24 hours after you use it. Itcontains a strong antiseptic (liquid used to kill germsand bacteria) called chlorhexidine gluconate (CHG).Showering with Hibiclens helps lower your risk ofinfection. Your nurse will tell you if there’s a reason you

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shouldn’t bathe with Hibiclens.

Your nurse will teach you how to use Hibiclens. Youshould only use Hibiclens on certain areas of your body.You can wash the rest of your body with alcohol-free,fragrance-free soap. You can bring soap from home, oryou can get it from your healthcare team.

The nurse will show you how to put a waterproofdressing (such as Aquaguard ) over your CVC dressingto it dry. If your dressing becomes wet or starts toloosen, tell your nurse.

Washing your handsGerms are often carried on your hands or on objects thatyou touch. Wash your hands well with soap after you usethe bathroom and before you eat.

Caring for your mouthMouth care is an important part of your daily routine. Itmust be done at least 4 times a day, or more often if youhave mouth sores. Good mouth care can help preventinfections and other complications in your mouth.

Follow the guidelines below.

Only use the mouthwash your nurse gives you. Don’tuse a store-bought mouthwash. Store-boughmouthwashes irritate and dry out your mouth and

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throat.

Your nurse will also give you toothpaste. Only use it ifit doesn’t irritate your mouth.

When your platelet count is low, you may bleed easily.Be very careful when you’re brushing your teeth, andalways use an ultra-soft toothbrush.

Some people prefer to use small green sponges formouth care. A member of your healthcare team cangive these to you.

Don’t use dental floss.

To keep your lips moist, apply a lubricant such asAquaphor or A&D ointment.

If your mouth becomes sensitive, avoid hot, spicy,acidic, or coarse foods. You may prefer soft or liquidfood served chilled or at room temperature.

Tell your nurse if you have any tenderness,discomfort, or pain in your mouth. If this happens,your doctor can prescribe medicine to help managethe pain.

NutritionChemotherapy and radiation therapy damage the liningof your stomach. Because of this, you may not feel wellenough to eat during your hospital stay. You may needto get nutrition through your IV to keep you from losing

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weight. This is called TPN (total parenteral nutrition).

The TPN mixture provides all the nutrients your bodyneeds. Your nutritional status will be checked daily andchanges will be made in the TPN mixture as needed.

Even if you’re getting TPN, you can try to eat and drinkif you feel well enough. Don’t force yourself to eat if youdon’t feel well. Your clinical dietitian nutritionist andnurse will talk with you about the food safe diet you’llfollow and which foods are best when you’re having yourtreatments.

Exercise and activityActivity is very important! Get out of bed at least twice aday and try to walk in your room every day to maintainyour muscle tone and strength. Sit up in your chair asoften and for as long as you can each day.

You can bring things such as a laptop, books, and gamesto help occupy your time. If you’re a student, you canbring your books and assignments to keep up withschoolwork. The hospital teacher will come to your roomand help you with your lessons.

The Physical Therapists (PTs) and OccupationalTherapists (OTs) will also evaluate your needs and helpyou maintain your muscle tone and strength as much as

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possible throughout your stem cell transplant.

What to Expect Between HospitalAdmission and the Day of YourTransplantSupportive careSupportive care medications are used to prevent or treatthe symptoms of a disease or side effects caused bytreatment as early as possible. You’ll get severalsupportive care medications throughout your transplantadmission. These medications include:

Ondansetron: helps reduce nausea (feeling likeyou’re going to throw up) and vomiting (throwing up)

Ursodiol: protects your liver from the side effects ofchemotherapy

Antibiotics & Antivirals: prevent or treat infections

You’ll also get red blood cell, platelet, and plasmatransfusions to correct anemia and prevent bleeding.

Cytoreductive therapyCytoreductive therapy is either chemotherapy alone orchemotherapy and radiation. Cytoreductive therapy willhelp destroy any cancer cells in your body and eliminateyour immune system so it doesn’t reject the new bloodstem cells.

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You’ll get chemotherapy for several days. Your team willreview your treatment plan with you. You can also referto a copy located in the front of this guide. Depending onyour treatment, you’ll have 1 to 2 days of rest after yourcytoreductive therapy before you get your blood stemcell transplant.

If you’re getting radiation therapy as part of yourcytoreductive therapy, you’ll written information aboutTotal Body Irradiation (TBI). You’ll also get a schedulewith the timing of each session that week. Thetreatments will be given 2 to 3 times per day. Eachsession lasts 20 to 40 minutes. A patient escort will takeyou to and from each session.

Types of Stem Cell TransplantsThe type of transplant you have depends on theunderlying disease or diagnosis and:

The type of donor

The level of HLA (tissue typing) match between youand your donor

The source of the donation (marrow, peripheral blood,or cord blood)

How the stem cells are processed in the laboratorybefore you get them

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You can read more about these things below. Yourdoctor will talk with you about the type of transplantyou’re scheduled to have.

Type of donor

Autologous donor: your own stem cells are collectedin the donor room and frozen. They can be thawedeither in the laboratory or at your bedside. Theattending physician will infuse the stem cells into yourCVC.

Allogeneic donor: stem cells are donated bysomeone other than yourself. An allogeneic donor canbe a family member or a volunteer unrelated donor.

Tissue typingIf you’re having an allogeneic stem cell transplant, yourdonor can be:

HLA matched (identical)

HLA mismatched (not identical)

Source of stem cellsBlood stem cells can come from:

Bone marrow: marrow is taken from the donor’s hipbones during a procedure in the operating room. Thedonor will get general anesthesia (medication to make

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them sleep) before the procedure.

Peripheral blood: blood stem cells are taken fromthe donor’s veins. The donor will take G-CSF(Neupogen ) for 4 to 5 days before the donation.They’ll then donate the stem cells in the blood donorroom while they’re awake.

Cord blood: blood stem cells are taken from umbilicalcord blood donated by a mother after her baby isborn. The cord blood cells are frozen and thawedwhen they’re needed. Cord blood can come from afamily member, but it usually comes from a publiccord blood bank.

Type of processing

None/minimal: red cells or plasma may be removedfrom the donor marrow or peripheral blood, but noother changes are made. This is called unmodified orT replete marrow or peripheral blood.

T cell reduced: the donor marrow or peripheralblood is treated in the laboratory to reduce thenumber of T cells. This helps lower the chance thatyou develop Graft versus Host Disease (GVHD). Thistype of stem cell transplant used to be called “T celldepleted.”

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What to Expect on the Day of YourTransplantOne to 3 days after you finish your cytoreductive therapytreatments, you’ll get the donor’s stem cells. The stemcells will be given to you through your CVC from asyringe or a bag, much like a blood transfusion. Thenurse will check your temperature, blood pressure,pulse, and oxygen level during and after the infusion.

Even though side effects are rare, a nurse will watchclosely for any side effects during your bone marrow orperipheral stem cell infusion. If you’re getting a cordblood transplant, you may experience high bloodpressure.

The blood stem cells will travel through yourbloodstream to your bone marrow space. There, theywill grow, making healthy blood cells in your body.You’ll stay in the hospital until your new stem cells workcan make enough white cells, red cells, and platelets.This takes about 4 to 6 weeks from the day of your stemcell transplant.

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EngraftmentEngraftment of the stem cells occurs when the donatedcells go to your marrow and make healthy new donorblood cells.

Depending on the type of stem cell transplant you haveand your disease, engraftment can occur anytimebetween 2 and 4 weeks after your stem cell transplant.The first sign of engraftment is the gradual rise of yourwhite blood cell count. When your ANC (absoluteneutrophil count) is 0.5 or greater for 3 days in a row,we consider you to be to be engrafted. Platelets aregenerally the last blood cell type to recover.Engraftment can be delayed because of infection,medications, low donated stem cell count, or graftfailure.

The new bone marrow may start making cells in the firstmonth after a stem cell transplant, but it may takeseveral months for your whole immune system to fullyrecover. Your medical team will watch your blood for tosee how your immune system is recovering.

Graft rejection and graft failureSometimes, the transplanted cells don’t engraft as wellas we want them to. Graft rejection means your immunesystem rejects the new stem cells. The cytoreductive

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treatments you get before your stem cell transplantmeant to help prevent graft rejection.

If your care team sees any signs of graft rejection orfailure, they’ll do special tests on your blood and bonemarrow. The results of the tests will guide yourtreatment. Your doctor will talk with you about yourtreatment options.

Possible Complications After YourTransplantVarious complications are possible while you’re waitingfor your blood counts to return to normal. Examplesinclude infections, mouth sores, diarrhea (loose orwatery bowel movements), bleeding, and anemia. Yourcare team will also watch you for any signs of organtoxicity (heart, lung, kidney and liver) and for GVHD.There are usually steps that you and your care team cantake to prevent, manage, and treat these complications.

For more details, review the consent form you signedwith your doctor.

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Everyone’s experience is unique. Not everyone willdevelop the symptoms or complications listed below.As a team, we’ll be observing you closely 24 hours aday. Please don’t hesitate to ask questions or expressyour concerns throughout your transplant journey!

Mucositis and diarrheaMucositis is inflammation in your mouth, inside yourcheeks and lips, and down your digestive tract. Certainchemotherapy drugs and radiation therapy can causethis inflammation. The inflammation can cause painfulsores, difficulty swallowing, and diarrhea.

Mucositis and diarrhea usually start 3 to 10 days aftertreatment starts. They usually heal 2 to 4 weeks aftertransplant as engraftment occurs. You’ll be given painmedication as needed to keep you comfortable.

InfectionYou’ll be at risk for bacterial, fungal, and viral infectionsfor several months after your stem cell transplant. Thisis because your immune system isn’t fully functioning.These infections are a major risk to your well-being,especially in the early recovery period until your newmarrow grows and makes white blood cells to fightinfection. Neutrophils recover first and fight bacterial

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infections, but T lymphocytes (T cells) that fight viraland some fungal infections can take several months torecover.

Fever is an important sign of infection. If you develop afever, tests (such as blood cultures) will be done to findthe cause of the fever. You’ll get antibiotics to help yourbody fight the infection.

Nearly everyone develops a fever during the first 2weeks after transplantation. Your team may change theantibiotics you’re taking to fight the infection causingthe fever. Most infections are treated successfully withantibiotics. If your care team thinks you have a centralline infection, a doctor can remove your line and insertperipheral IVs to give you your medications. Yourcentral line can be removed while you’re in your hospitalroom.

Other tests that may be done when you have feverinclude:

Blood tests to look for specific infections

X-Rays

Computed tomography (CT) scans or a positronemission tomography (PET) scan to look for infectionin your internal organs

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You’ll get medications to treat and prevent infections.You’ll also get anti-viral medications to help keep anyviral infections you had in the past from coming backafter your stem cell transplant. These infections caninclude:

Cold sores

Shingles

Pneumocystis jirovecii pneumonia (PCP)

Cytomegalovirus (CMV)

Other infections affecting the lungs or intestine

People whose immune systems aren’t working well canget infections that healthy people don’t usually get.These infections are called opportunistic infections. Youmay need medication to help protect you fromopportunistic infections. You’re at risk for opportunisticinfections until your white blood cell count and immunesystem return to normal.

BleedingPlatelets are colorless cells that are a part of your blood.They’re made in your bone marrow. The main job ofplatelets is to stop bleeding.

When your platelet count drops below a certain level setby your doctor, you’ll get a platelet transfusion to

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prevent bleeding. If you have bleeding, you may getmore platelets or fresh frozen plasma (FFP) to replaceproteins needed for your blood to clot.

To avoid bleeding:

Avoid sharp objects (such as a straightedge razor,scissors, and nail clippers)

Use a soft toothbrush and avoid flossing

Blow your nose gently, if needed

AnemiaWhen your red blood cell count is low, you may haveweakness and fatigue (feeling more tired than usual).Your hemoglobin (a measure of your red blood cellcount) will be checked every day. If your hemoglobin islow, you’ll get a red blood cell transfusion.

Organ complicationsYou may have damage to your kidneys, bladder, liver,lungs, heart, or central nervous system. You’ll beexamined often and have daily lab tests to check fororgan damage. Your treatment will be adjusted asneeded to reduce this damage. Examples of adjustmentsinclude changing a medication you’re taking or loweringthe dose of a medication you’re taking.

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KidneysYour kidneys filter your blood and make urine to carrywaste products out of your body. Chemotherapy andother medications can affect how well your kidneyswork.

Your medical team will know how well your kidneys areworking by monitoring your daily blood tests (BUN andcreatinine) and knowing how well your kidneys aremaking urine to get rid of toxins in your body. This iswhy it’s important that your nurse knows and recordsexactly how much you drink and how much urine youmake. It’s also why you must be weighed at least once aday. If your weight increases, you may need amedication to help your kidneys get rid of fluid andtoxins in your body.

Additional tests that may be done to check how wellyour kidneys are working are:

24-hour urine collection for a creatinine clearance test

Glomerular Filtration Rate (GFR) done in theradiology department

Damage to your kidneys may cause hypertension (highblood pressure) that needs to be treated. Your medicalteam will determine if you need treatment by looking at

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the recordings of your vital signs. Your vital signs will bechecked every 4 hours.

Bladder (hemorrhagic cystitis)Certain drugs, such as cyclophosphamide (Cytoxan ),and certain viruses, such as BK virus, can irritate thelining of your bladder. This may cause blood in yoururine and make it painful to urinate (pee). This is calledhemorrhagic cystitis.

To help prevent or treat this complication, you’ll getlarge amounts of IV fluids. This will make you urinateoften. Treatment for BK virus may include painmedication and antibiotics. Sometimes, a urinary (Foley)catheter can be placed in your bladder to help youurinate more easily.

LiverYour liver removes harmful substances from your blood,absorbs nutrients, and makes important proteins to helpyour blood clot. It also makes bile to help digest fattyfoods. Damage to your liver can cause many problems.

After transplant, we’re particularly concerned if smallblood vessels in your liver are injured. The blood vesselscan become blocked, making it difficult for blood to flowproperly. This type of injury is called veno-occlusivedisease (VOD) or sinusoidal obstructive syndrome (SOS).

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VOD/SOS can cause your liver to get bigger and damageyour liver cells. Swelling of your liver can also causepain in your right upper abdomen (belly) under your ribbones. Because fluid can’t pass through your liver, fluidmay build up in your abdomen This is called ascites.VOD/SOS can be mild or severe depending on theamount of fluid that your liver can’t handle.

To check how your liver is working, you may have:

Blood lab work (bilirubin, AST, ALT, and bloodclotting proteins)

An ultrasound scan to look at the size of your liver,how much ascites you have, and how well blood canflow through your liver

If you develop VOD/SOS, you may get treatment withmethylprednisolone, defibrotide, or both medications.Your doctor will discuss treatment options with you.

LungsYour lungs control your breathing. You may breathefaster or develop a low oxygen level if there’s a problemwith your lungs. Problems with your lungs that canhappen after a stem cell transplant include:

Damage to your lungs from chemotherapy or radiationthat causes inflammation and scarring (interstitial

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pneumonitis). If this happens, it usually shows uplater after transplantation.

Pneumonia caused by an infection in your lungs.

Lung infections happens most often in the first fewweeks after a stem cell transplant. Your doctors andnurses will watch you closely for any sign of pneumonia.Tell them if you notice any change in your breathing or ifyou get a cough. Treatment of pneumonia depends onwhat bacteria, virus, or fungus causes the pneumonia.

To help find a lung infection, you may have a:

Chest x-ray

CT scan

Bronchoscopy (a procedure to take some fluid fromyour lungs so it can be tested for infection).

To help prevent and treat pneumonia, it’s important foryou to exercise your lungs. Your nurse will show youhow to use an incentive spirometer (a device that youbreathe in to that helps your lungs expand).

HeartYour heart pumps blood throughout your body. Certainchemotherapy drugs may have side effects that damageyour heart. Your doctors will watch your heart function

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carefully while you’re in the hospital.

Your heart function can be checked using:

Lab tests

An electrocardiogram (EKG)

An echocardiogram (ECHO)

Graft versus Host Disease (GVHD)T cells are white blood cells that attack foreign materialssuch as viruses and fungus. T cells also attack foreigngrafts (tissue transplants), such as marrow, kidney, lung,or heart transplants. This is called graft rejection. T cellsin the donor tissue also attack foreign material. Thedonor T-cells (graft) see the patient (host) as foreign andattack the patient’s tissues. This is called Graft versusHost Disease.

GVHD can develop when the new stem cells start toengraft (grow). The risk for GVHD is lower, but notgone, in people who get a closely HLA matched graft ora T cell reduced (depleted) stem cell transplant.

Anyone whose donor isn’t an identical twin gets sometype of prevention for GVHD. This prevention includeseither removing the T cells from the transplant or takingmedications (such as MMF, cyclosporine, or tacrolimus).Your doctor will talk with you about these options before

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you’re admitted to the hospital.

There are 2 types of GVHD: acute (early, usually within3 months of transplant) and chronic (late and longeracting). Chronic GVHD usually develops after the first100 days, and within the first year of transplant.

Common signs of acute GVHD include:

Skin rash, often starting on the palms of your handsor soles of your feet

Diarrhea

Jaundice (a yellow skin color)

Abnormal liver function tests

Common signs of chronic GVHD include

Skin rash or dry or thickened skin

Loss of energy

Loss of appetite and weight

Diarrhea

Dry mouth and mouth sores

Dry eyes

Hair loss

Liver inflammation

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GVHD may be mild or severe. Your medical team will beconstantly watching you for any of these signs and willrecommend tests for evaluation and treatment options.

Tests that might be done to evaluate for GVHD are:

Lab tests

Skin biopsy

Colonoscopy or endoscopy to take biopsies (tissuesamples) of the lining of your intestines

If you have any questions, contact a member of yourhealthcare team directly. If you're a patient at MSKand you need to reach a provider after 5:00 p.m.,during the weekend, or on a holiday, call212-639-2000.

For more resources, visit www.mskcc.org/pe to searchour virtual library.

About Your Stem Cell Transplant: Information for PediatricPatients - Last updated on August 26, 2021All rights owned and reserved by Memorial Sloan KetteringCancer Center

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