PE2039 Caring for Your Child During Immunotherapy Handbook · Caring for Your Child During...

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Cancer and Blood Disorders Center

Caring for Your Child During Immunotherapy


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For Families Who Do Not Speak EnglishCalling the hospitalIt is very important that you are able to call the hospital and talk to your child’s nurse practitioner or doctor if you have questions or if your child is sick. The hospital has an interpreter service that will call the hospital for you. You can call this number 24 hours a day, 7 days a week, for both urgent and non-urgent calls. Call the interpreter service at 1-866-583-1527.

For emergencies, call 911.

At the hospitalIf your child is in the hospital or visits the clinic, we can provide an interpreter to help you talk with your child’s doctors and nurses. We also use telephone interpreters if it is hard to get an interpreter to visit with you.

Información par las familias que no hablan inglés

Llamando al hospital

Es muy importante que usted pueda comunicarse al hospital para hablar con su médico o la enfermera especializada si tiene preguntas o su niño está enfermo. El hospital cuenta con un servicio de interpretación telefónica que le puede asistir con las llamadas al hospital sin costo alguno para usted.Puede usar este número las 24 horas del día, 7 días a la semana para llamadas urgentes y no urgentes. El número para el servicio de interpretación telefónica es 1-866-583-1527.

Para emergencias llame al: 911.

Estando en el hospital

Si su niño está hospitalizado o tiene citas en las clínicas, nosotros podemos proveer servicio de intérpretes para ayudarle a comunicarse con los doctores y enfermeras de su niño. En caso de no conseguir un intérprete en persona dentro de un lapso de tiempo razonable, también contamos con servicios de interpretación telefónica.


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Информация для семей, не говорящих по-английски Звонки в госпитальОчень важно, чтобы Вы могли позвонить в госпиталь и поговорить с Вашей практикующей медсестрой или врачом, если у Вас есть вопросы или Ваш ребенок заболел. В госпитале есть телефонная линия, обслуживаемая переводчиками, которые помогут Вам позвонить в госпиталь без каких-либо затрат с Вашей стороны. Вы можете звонить по этому номеру круглосуточно, семь дней в неделю как по срочным, так и несрочным вопросам. Звоните в переводческую службу по тел. 1-866-583-1527.

Для получения неотложной помощи звоните по тел. 911.

Звонки внутри госпиталяЕсли Ваш ребенок находится в госпитале или на приеме в клинике, мы можем предоставить переводчика, чтобы помочь Вам общаться с врачом или медсестрой Вашего ребенка. Мы также пользуемся переводом по телефону, если переводчик не может придти лично.

Thông Tin Cho Những Gia Đình Không Nói Được Tiếng Anh Gọi tới bệnh việnĐiều rất quan trọng là làm sao quý vị có thể gọi tới bệnh viện và nói chuyện với y tá thực hành hoặc bác sĩ của mình nếu có thắc mắc hoặc nếu con quý vị bị bệnh. Bệnh viện có dịch vụ thông dịch qua điện thoại miễn phí để hỗ trợ quý vị khi quý vị cần gọi bệnh viện. Quý vị có thể gọi cho dịch vụ thông dịch theo số 1-866-583-1527, 24 giờ một ngày, 7 ngày một tuần, cả cuộc gọi khẩn cấp hay không khẩn cấp.

Đối với những trường hợp cấp cứu, hãy gọi 911.

Ở bệnh viện Nếu con quý vị đang nằm bệnh viện hoặc đến khám tại phòng mạch, chúng tôi có thể sắp xếp thông dịch viên đến giúp quý vị nói chuyện với bác sĩ và y tá của con mình. Chúng tôi cũng sử dụng phiên dịch qua điện thoại nếu không thể sắp xếp cho thông dịch viên không có mặt ở đó.

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Your Child’s Information

Name

Date of birth

Seattle Children’s Hospital medical record number

Type of cancer

Date of diagnosis

If found, return to (name and phone number):


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Table of ContentsFor Families Who Do Not Speak English ............................................... 3

Your Child’s Information .............................................................................. 5

WHAT TO EXPECT

Your Child’s Primary Healthcare Team ....................................................9

Contact Information .....................................................................................9

What to Expect While Receiving Immunotherapy? .........................11

What is immunotherapy or T-cell therapy?

Where does immunotherapy care occur?

What are the steps and general timeline for my child’s care?

Consent ...................................................................................................... Insert

What to Expect After Receiving Immunotherapy? .........................15

What kind of follow-up will my child need?

What symptoms might my child have?

Will my child need to stay in the hospital?

CARING FOR YOUR CHILD

Parents and Caregivers: Emergency Steps .........................................17

Temperature Conversion Chart .................................................................19

Types of Central Lines and their Care - PE2062 ........................ Insert

RESOURCES

Notes ................................................................................................................. 22

Guest Services - PI749 ......................................................................... Insert

Transportation - PI602 ......................................................................... Insert

Places to Stay - PI600.......................................................................... Insert

Directions To and From the Ronald McDonald House - PI719 ...................................................... Insert

Family Resource Center - PI198 ...................................................... Insert

Restaurants - PI601 .............................................................................. Insert

Directions to the Central Seattle Donor Center ...............................23


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What to Expect

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Your Child’s Primary Healthcare TeamWrite the names and phone numbers you will need in the spaces below.

Attending doctor (MD)

Fellow doctor (MD)

Nurse practitioner (ARNP)

Coordinator nurse (RN)

Social worker

Child Life specialist

Dietitian (RD)

How to contact your team

For appointment scheduling

Call the number and select your disease-based team coordinator206-987-2106

Hospital paging operator (main switchboard) 206-987-2000

Cancer and Blood Disorders Center outpatient clinic 206-987-2106

inpatient Cancer Care Unit 206-987-2032


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Useful numbers

Ronald McDonald House 206-838-0600

Children’s outpatient pharmacy 206-987-2138

University of Washington Cancer Center 206-598-4100

Children’s Homecare 425-482-4000

Children’s Hospital toll-free number 1-866-987-2000

Other important numbers

Name Pager Voice mail Fax number

What to Expect

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What to Expect While Receiving Immunotherapy What is immunotherapy or T-cell therapy?T-cells are white blood cells in the immune system that fight infection. The goal with immunotherapy is to reprogram a person’s own T-cells so they can seek out and destroy cancer cells wherever they are hiding in the body.

Where does immunotherapy care occur?Immunotherapy care takes place in four locations:

1. Cancer and Blood Disorders Center (CBDC) clinic

This clinic is in the Seattle Children’s hospital in the Mountain B zone on level 8. The clinic phone number is 206-987-2106. It is open Monday through Friday from 8 a.m. to 5 p.m., and 8 a.m to 3 p.m. for emergencies. On Saturdays, Sundays and holidays, the clinic is open for urgent lab work, blood and platelet transfusions and chemotherapy only.

The CBDC clinic is the main place you will go for your child’s care. You and your child will come to this clinic for:

• Planned visits with the doctor• Lab tests• IV medicines• Blood and platelet transfusions• Procedures• Admission to the hospital • Emergency visits

For urgent matters such as fever, call the clinic and ask to speak to the Triage Nurse.

2. Cancer Care Unit

This unit is in the Seattle Children’s hospital in the Forest A zone on levels 7 and 8. The reception desk phone number is 206-987-2032. The unit is open 24 hours a day. Your child will be admitted to the Cancer Care Unit for chemotherapy or if they become sick and need be taken care of by the cancer team. Both parents may sleep at the bedside and visitors are allowed from 8 a.m. until 8 p.m. All visitors under the age of 12 must be accompanied by an adult at all times and may not stay overnight.


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3. Emergency Room

The Emergency Room at Seattle Children’s hospital is in the Forest zone on level 1. Patients undergoing immunotherapy are seen in the Emergency Room for urgent issues or emergencies when the Cancer and Blood Disorders Center clinic is closed.

If your child is having an emergency before 8 a.m. and after 5 p.m., and on weekends and holidays, call the paging operator at 206-987-2000 and ask for the oncology fellow on-call. If needed, the fellow on-call will direct you to bring your child to the Emergency Room to be seen and will call ahead to let them know you are coming.

4. Pediatric Intensive Care Unit (PICU)

The PICU is in Seattle Children’s hospital in the Forest zone on level 6.This unit is only for those who are ill enough to need special medicine to keep their blood pressure up or a breathing tube to help them breathe.

What are the steps and general timeline for my child’s care?

1. Your child’s blood cells are collected

You and your child will have an initial visit with the immunotherapy team to sign consents for immunotherapy and medical screening. You will have other visits for labs and tests during that week.Next, your child’s blood is collected directly through an apheresis catheter (a soft plastic tube that separates blood into parts) or through an IV in your child’s arm. During collection, blood is removed and processed by an apheresis machine that separates the liquid part of blood from the blood cells. The white blood cells are collected and the rest of the cells are returned to your child along with their blood plasma. This procedure can take anywhere from 2 to 5 hours.

What to Expect

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2. The T-cells are extracted

Your child’s white blood cells go to a special part of Seattle Children’s Research Institute called the Therapeutic Cell Production Core (TCPC). The white blood cells are then separated further to gather T-cells. T-cells are a type of white blood cell that are made in the bone marrow and mature in the thymus gland. T-cells are an important part of the immune system that fight infection.

3. The T-cells are reprogrammed

Laboratory staff remove the T-cells from the sample, purify them and reprogram them. In this case, “reprogram” means to change the T-cells by adding recombinant DNA (genetically modify them). Then, the newly programmed T-cells are grown to multiply into billions of new cells. The change tells the T-cells to make a place on their surface (a receptor) that acts like Velcro. This receptor allows the cells to find and bind to a target on the cancer cells. When they bind, the T-cells can attack the cancer cells as if they were fighting an infection. The receptor that is made on the T-cells is called a chimeric antigen receptor (CAR). T-cells that have the receptor are called CAR T-cells.

T-cells

Blood sample

Chimeric antigen receptor (CAR)


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4. T-cells Grow

You will return home for about 2 to 6 weeks while the T-cells grow. Your child may receive chemotherapy prescribed by their primary medical team at home to help keep their cancer at a low level before T-cell infusion. Chemotherapy also helps decrease the number of white blood cells in the body to make room for the T-cells. Most children with solid or liquid tumors will receive chemotherapy.

5. Reprogrammed cells are placed in the body

Your child will return to the CBDC clinic to get their newly programmed T-cells infused into their body. Infusion is the delivery of a substance directly into the body.

• The reprogrammed T-cells will be infused directly into the blood through a central (PICC, Hickman or Port) line.

• If your child has a central nervous system (CNS) tumor, the reprogrammed T-cells will be infused directly into their tumor through a soft, plastic tube called an ommaya catheter instead of directly into their blood.

• Infusion takes about 20 minutes, then your child is watched closely for reactions for 3-6 hours.

• Reprogrammed cells should go to work within a week, finding and destroying cancer cells.

• The change made to the T-cell also “tags” the cells so our research team can track them in the body. If doctors want to stop the action of the T-cells later, they can use a medicine that recognizes the “tag.”

Reprogrammed T-cells

What to Expect

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What to Expect After Immunotherapy What kind of follow-up will my child need? Your child will be monitored for 3 to 4 weeks after T-cell infusion. During this time, you will visit your primary healthcare team or the CBDC at Seattle Children’s regularly. These visits will include an evaluation including labs and additional tests to review the status of your child’s cancer and how the T-cells are working.

Your child needs to be within one hour of Seattle Children’s Hospital at all times during the 4 weeks after T-cell infusion.

After 3 to 4 weeks of monitoring, your child can return to their regular primary healthcare team/family doctor or pediatrician near home. Your child may be followed by the Seattle Children’s research team for months to years after the T-cell infusion depending on the study.

What symptoms might my child have after the infusion?The healthcare team will watch for symptoms of allergic reaction, fever, cytokine release syndrome, low blood pressure, trouble breathing, neurological symptoms such as headache and seizures, or worsening baseline symptoms.

Will my child have to stay in the hospital? Following T-cell infusion, your child will be admitted to the hospital Cancer Care Unit if: • They have any symptoms common to immunotherapy treatment such as

chills, rapid heartbeat or cough.• They have a low-grade fever or fever of 38.0 Celsius (100.4 Fahrenheit) or

higher. Most patients have fever by day 14 following T-cell infusion. This is a good sign that the T-cells are working.


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Caring for Your Child

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Example of Concern Examples of Emergency

If your child has:

• Had a temperature in the yellow zone

• (99.4-100.2 F) for 8 hours

• A fever in the red zone (101 F or higher)

• Chills

• Bleeding for longer than 10 minutes

• Increased fatigue

• Pain that does not go away

• Nausea/vomiting that does not go away

• Diarrhea

• Constipation (no poop for 3 days)

• Not eaten food or drank water

• Red or itchy skin

• Exposure to chickenpox or shingles

• You feel something is not right

Call 911 if you are worried that something is seriously wrong with your child or if they are having:

• A seizure

• A hard time breathing or not breathing

• Bleeding a lot (hemorrhaging) that cannot be stopped

• Difficulty swallowing

• Swelling of the lips or tongue

• Cannot be woken up

Call Children’s Hospital

They will tell you what to do

Call 911An ambulance will come pick up and drive your child to the hospital.

Parents and Caregivers: Emergency Care Steps


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Allergic reactionsThe signs of an allergic reaction include:• Hives – raised bumps on skin that usually itch• Itching• Redness of skin• Rash• Swollen tongue or lips – call 911• Difficulty breathing or swallowing – call 911

Signs of an allergic reaction can be an emergency. If your child has any of these signs, call the clinic or on-call doctor right away. If your child has swollen lips or tongue, or any difficulty breathing, call 911.

Nausea and vomitingMedicines for chemotherapy can cause nausea and vomiting. This usually starts within a few minutes or hours of starting the chemotherapy. Most of the time, your child will feel better 12 to 48 hours after the chemotherapy is done. For other medicines, nausea and vomiting last longer. If vomiting is severe, call your child’s doctor or nurse.

ConstipationConstipation is when your child poops less than usual. It can be caused by medicines for cancer. If your child does not poop in 3 days, call your child’s doctor or nurse practitioner. They may suggest medicine to help. Avoid using suppositories or enemas.

DiarrheaDiarrhea is when your child poops more often than usual, or when their poop is runny or more loose than usual. Diarrhea can happen for many reasons. It might be caused by some medicines, or a certain food or formula might cause problems. It can also be a symptom of infection. If your child is having diarrhea, contact your child’s nurse practitioner, the clinic or on-call fellow. Your child may need to be seen by their provider to find out why they are having diarrhea. Do not give your child any medicines to stop diarrhea unless you are told to do so by their nurse or doctor.

Exposure to chickenpox or shinglesIt is very important for children with cancer to avoid being exposed to chickenpox or shingles. If you know that your child has been around someone with chickenpox, you need to call your healthcare provider right away. You also need to call if you see a rash on your child that you think might be chickenpox or shingles.

Caring for Your Chiild

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°F °C

96.897.898.098.298.498.698.899.099.2

36.036.536.736.836.937.037.137.237.3

GREEN ZONENormal Temperature

99.499.699.8100.0100.2

37.437.637.737.837.9

YELLOW ZONEDo not take Tylenol.Recheck temperature in 30-60 minutes.

100.4100.6100.8 101101.2101.4101.6101.8102.0102.2102.4102.6102.8103.0103.2103.4103.6103.8104.0104.2104.4104.6104.8105.0

38.038.138.2 38.338.438.638.738.838.939.039.139.239.339.439.639.739.839.940.040.140.240.340.440.6

FEVER ZONEDo not take Tylenol.

Call the clinic or on-call doctor.

Temperature Conversion Chart for Patients Who Have Received T-cells


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Resources

Resources

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Resources


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Notes

Resources

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Directions to the Central Seattle Donor CenterYour child will go to the Central Seattle Donor Center if they need to have their veins assessed.

Driving Directions

From I-5 Southbound:

• Take the James Street exit 165A in downtown Seattle. Stay in the left lane.

• Turn left at first light onto Cherry. You will cross under the freeway and head up the hill.

• Turn left at 9th Avenue.

• Go 3 blocks and turn right into the Blood Center parking garage (on right under building) at 914 9th Avenue.

From I-5 Northbound:

• As you approach the I-90 exit 164A, watch for the signs to Madison Street. Take the Madison Street exit.

• Turn right onto Madison, then right onto 9th Avenue.

• Take a quick left and enter the Blood Center parking garage (on left under building) at 914 9th Avenue.

Parking is available and free for blood donors. Take the elevator to the first floor. Register your vehicle at the registration desk.


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Seattle Children’s offers interpreter services for Deaf, hard of hearing or non-English speaking patients, family members and legal representatives free of charge. Seattle Children’s will make this information available in alternate formats upon request. Call the Family Resource Center at 206-987-2201.

This handbook has been reviewed by clinical staff at Seattle Children’s. However, your child’s needs are unique. Before you act or rely upon this information, please talk with your child’s healthcare provider.

© 2019 Seattle Children’s, Seattle, Washington. All rights reserved.

4800 Sand Point Way NEPO Box 5371Seattle, WA 98145-5005

206-987-2000 (Voice)1-866-987-2000 (Toll-free for business use only)1-866-583-1527 (Family Interpreting Line)

www.seattlechildrens.org

Hematology/OncologyCancer and Blood Disorders Center

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