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Each year more than 6,000 children and teens in the United States are diagnosed with a solid tumor (e.g., kidney tumor, liver tumor, neuroblastoma, retinoblastoma, or sarcoma). The illnesses and their treatments can have devastating effects on family, friends, schoolmates, and the larger community. This newly updated edition contains essential information families need during this difficult time. It includes descriptions of the newest treatments, such as computer-assisted surgery, tandem stem cell transplants, and targeted therapies as well as practical advice about how to cope with diagnosis, medical procedures, hospitalization, school, and finances. Woven throughout the text are true stories–practical, poignant, moving, funny–from more than 100 children with cancer, their siblings, and their parents.
|Publisher:||Childhood Cancer Guides|
|Edition description:||Third Edition|
|Product dimensions:||7.00(w) x 9.20(h) x 0.70(d)|
About the Author
Anne Spurgeon, trained as a historian at the University of Wisconsin, is the parent of a long-term survivor of rhabdomyosarcoma, a soft tissue sarcoma. For more than 15 years, she served as the executive director of the Badger Childhood Cancer Network in Madison, Wisconsin. Nancy Keene is the mother of a long-term survivor of childhood cancer and one of the founders of the nonprofit publisher, Childhood Cancer Guides. A well-known writer and advocate for children with cancer, she has written fourteen consumer health books on topics ranging from childhood cancer to working with your doctor. She was the first chair of the Patient Advocacy Committees of both the Children’s Cancer Group and the Children’s Oncology Group.
Read an Excerpt
A Parent's Guide to Solid Tumor Cancers
By Anne Spurgeon, Nancy Keene
Childhood Cancer GuidesCopyright © 2016 Childhood Cancer Guides
All rights reserved.
"We have the results of the scan back; I'm afraid it's bad news. Your child has a tumor." For every parent who has heard those words, it is a moment frozen in time. In one shattering instant, life forever changes. Families are forced into a strange new world that feels like an emotional roller coaster ride in the dark. Every member of the family will feel strong emotions. However, with time and the knowledge that many children survive cancer, hope will grow.
Signs and symptoms
Cancer begins with the transformation of a single cell. The malignant changes that occur in these renegade cells can cause several signs and symptoms, many of which mimic common childhood illnesses.
Parents are usually the first to notice that something is wrong with their child, and they seek medical attention. Occasionally, a diagnosis of cancer is based on chance findings during a routine examination by a pediatrician, eye doctor, or dentist. Rarely, it is discovered on an x-ray done for other reasons.
Following are some of the signs and symptoms that may indicate the presence of a solid tumor:
Swelling or persistent pain in bones, joints, the back, or legs
A lump, especially in the abdomen, neck, chest, pelvis, armpits, or legs
A whitish color behind the pupil
Continued, unexplained weight loss
Nausea that persists
Eye or vision changes that occur suddenly and persist
Recurrent or persistent fevers
Most parents react to their concerns by taking their child to a doctor. Usually, the doctor performs a physical exam and may order blood work or x-rays.
Ten days after a well-baby check, I was changing 3-month-old Estele's diaper and noticed that the right side of her belly felt hard. I felt around and found a lump. It was a Sunday, so I called the nurse line at the 0pediatrician's office and was told it was probably constipation. Estele had gone several times that day, and I just knew it wasn't that. My husband and I took her to the emergency room where an ultrasound was done. They didn't tell us what was wrong but said we had to go to the children's hospital right away and not to stop anywhere.
Sometimes the diagnosis is not as easy and fast as Estele's:
When Hailee was a baby, we noticed that sometimes her eye appeared white and sometimes it looked reddish. We were worried, but the pediatrician said that she was healthy. He eventually gave us a referral to see an ophthalmologist when we insisted. Since he didn't feel it was an emergency, we had to wait 3 months to see the eye specialist, who diagnosed her unilateral retinoblastoma. By that time, Hailee's retina was detached, and her eye had to be enucleated. I remember feeling completely shocked when the specialist said that she had a disease that would kill her if left untreated.
Where should your child receive treatment?
After a tentative diagnosis of cancer, most physicians refer the family to the closest major children's hospital for further tests and treatment. It is very important that the child with cancer be treated at a facility that uses a team approach, including pediatric oncologists, oncology nurses, specialized surgeons and pathologists, pediatric nurse practitioners, pediatric radiologists, psychologists, child life specialists, rehabilitation specialists, education specialists, and social workers. State-of-the-art treatment is provided at these institutions, offering your child the best chance for remission (disappearance of the disease in response to treatment) and ultimately, cure.
The day that I took Cassandra (age 5) to the pediatrician, I had assumed she would be sent home on antibiotics for some type of infection. She had been complaining of pain in her left knee and had developed a large lump on her left buttock. Instead, we left with instructions for her to eat nothing, since she was going to be sedated the following morning for some scans at the children's hospital. From that point on, things happened very fast. I remember only bits and pieces of those first few days at the hospital. I was told that Cassandra had rhabdomyosarcoma, that the following day they would do a biopsy and implant a central catheter, and that chemotherapy would be started as soon as possible.
Many parents become physically ill in the weeks following their child's diagnosis. This is not surprising, given that most parents stop eating or grab only fast food, have trouble sleeping, and are exposed to all sorts of illnesses while staying in the hospital. Every waking moment is filled with excruciating emotional stress, which makes the physical stress much more potent and weakens the body's immune response.
The second week in the hospital I developed a ferocious sore throat, runny nose, and bad cough. Her counts were on the way down, and they ordered me out of the hospital until I was well. It was agony.
* * *
That first week, every time my son threw up, so did I. I also had almost uncontrollable diarrhea. Every new stressful event in the hospital just dissolved my gut; I could feel it happening. Thank God this faded away after a few weeks.
To help prevent illness, try to eat nutritious meals, get a break from your child's bedside to take a walk outdoors, and find time to sleep. Care needs to be taken not to overuse drugs or alcohol in an attempt to control anxiety or cope with grief. Although physical illnesses usually end or improve after a period of adjustment, emotional stress often continues throughout treatment.
The shock of diagnosis results in an overwhelming number of intense emotions. Cultural background, individual coping styles, basic temperament, and family dynamics all affect an individual's emotional response to stress. There are no set stages of response, and parents frequently find themselves vacillating from one emotional extreme to another. Many of these emotions reappear at different times during the child's treatment. All of the emotions described below are normal responses to a diagnosis of cancer in a child.
The emotional responses of children and teens are discussed in Chapter 21, Communication and Behavior.
Confusion and numbness
In their anguish, most parents remember only bits and pieces of the doctor's early explanations of their child's disease. This dreamlike state is an almost universal response to shock. The brain provides protective layers of numbness and confusion to prevent emotional overload. Pediatric oncologists understand this phenomenon and are usually quite willing to repeat information as often as necessary. Children's hospitals have nurse practitioners, physician assistants, nurses, and child life specialists who translate medical information into understandable language and answer questions for both parents and children. Do not be embarrassed to say you do not understand or that you forgot something you were told. It is sometimes helpful to write down instructions and explanations, record them on a small audio recorder or smartphone, or ask a friend or family member to help keep track of all the new and complex information. These notes can be transcribed and kept with the written materials you receive from the medical providers so you can refer to them later.
When I left the doctor's office, I was a mass of hysteria. I couldn't breathe and felt as if I was suffocating. Tears were flowing nonstop. I had lost total control of myself and had no idea of how to stop my world from turning upside down.
* * *
For a brief moment I stared at the doctor's face and felt totally confused by what he was explaining to me. In an instant that internal chaos was joined with a scream of terror that came from some place inside me that, up until that point, I never knew existed.
Denial is when parents simply cannot believe that their child has a life-threatening illness. Denial helps parents survive the first few days after diagnosis, but gradual acceptance must occur so the family can make the necessary adjustments to accommodate cancer treatment. Life has dramatically changed. When parents accept what has happened, understand their fears, and begin to hope, they are better able to advocate for their child and their family. This process takes time.
I walked into the empty hospital playroom and saw my wife clutching Matthew's teddy bear. Her eyes were red and swollen from crying. I had no idea what had happened. A minute later the doctor came into the room with several residents [doctors who are receiving specialized training]. He told me that Matthew had cancer and that he was very sick. I remember thinking that there had to have been a mistake. Maybe he was reading the wrong chart? My initial reaction was that it was physically impossible for one of my children to have cancer. Cancer is a disease of the elderly. Kids don't get cancer!
Guilt is a common and normal reaction to a diagnosis of childhood cancer. Parents sometimes feel they have failed to protect their child, and they blame themselves. It is especially difficult because the cause of their child's tumor, in most instances, cannot be explained. There are questions: How could we have prevented this? What did we do wrong? How did we miss the signs? Why didn't we bring her to the doctor sooner? Why didn't we insist that the doctor do a scan? Did he inherit this from me? Why didn't we live in a safer place? Was it because of the fumes from painting the house? Why? Why? Why? Nancy Roach describes some of these feelings in her booklet The Last Day of April:
Almost as soon as Erin's illness was diagnosed, our self-recrimination began. What had we done to cause this illness? Was I careful enough during pregnancy? ... I wondered about the toxic glue used in my advertising work or the silk screen ink used in my artwork. Bob questioned the fumes from some wood preservatives used in a project. We analyzed everything — food, fumes, and TV. Fortunately, most of the guilt feelings were relieved by knowledge and by meeting other parents whose children had been exposed to an entirely different environment.
It may be difficult to accept, but parents need to understand that they did nothing to cause their child's illness. Years of research have revealed little about what causes childhood solid tumors or what can be done to prevent them.
Fear and helplessness
Fear and helplessness are two faces of the same coin. Nearly everything about this new situation is unknown, and what parents do know — that their child has a life-threatening illness — is too terrifying to contemplate. Each new revelation about the situation raises new questions and fears: Can I really flush a catheter or administer all these drugs? What if I mess something up? Will I be fired if I miss too much work? Who will take care of my other children? How do I tell my child not to be afraid when he can see I am scared to death? How will we pay for this? The demands on parents' time, talents, energy, courage, and strength are daunting.
Sometimes I would feel incredible waves of absolute terror wash over me. The kind of fear that causes your breathing to become difficult and your heart to beat faster. While I would be consciously aware of what was happening, there was nothing I could do to stop it. It's happened sometimes very late at night, when I'm lying in bed, staring off into the darkness. It's so intense that for a brief moment, I try to comfort myself by thinking that it can't be real, because it's just too horrible. During those moments, these thoughts only offer a second or two of comfort. Then I become aware of just how wide my eyes are opened in the darkness.
A child's diagnosis strips parents of control over many aspects of their lives and can change their entire world view. All the predictable and comforting routines are gone, and the family is thrust into a new world that is populated by an ever-changing cast of characters (interns, residents, fellows, pediatric oncologists, surgeons, nurses, social workers, and technicians); a new language (medical terminology); and seemingly endless hospitalizations, procedures, and drugs. This transition can be hard on all parents, particularly those who are intimidated by doctors and medical environments, and those who are used to a measure of power and authority in their home or workplace.
My husband had a difficult time after our son was diagnosed. We have a traditional marriage, and he was used to his role as provider and protector for the family. It was hard for him to deal with the fact that he couldn't fix everything.
Parents often feel utterly helpless. For example, physicians they have never met are presenting treatment options for their child. Parents are also faced with the fact that they cannot do anything that will take away their child's illness or make everything better, and parents' inability to relieve their child's suffering can lead to feelings of great helplessness. Even if parents are comfortable in a hospital environment, they may feel helpless because there is simply not enough time in the day to care for a very sick child, deal with their own changing emotions, educate themselves about the disease, notify friends and family, make job decisions, and restructure the family schedule to deal with the crisis.
It's not a nice way to have to live. What's waiting around the next corner? That's a scary question. One of my biggest fears is the uncertainty of the future. All that we can do is the best we can and hope that it's enough.
Many parents explain that helplessness begins to disappear when a sense of reality returns. They begin to make decisions, study their options, learn about the disease, and become comfortable with the hospital and staff. As their knowledge grows, so does their ability to participate constructively as members of the treatment team (for more information, see Chapter 11, Forming a Partnership with the Treatment Team). However, do not be surprised if feelings of fear, panic, and anxiety erupt unexpectedly throughout your child's treatment.
Anger is a common response to the diagnosis of a life-threatening illness. It is nobody's fault that children are stricken with solid tumors. Because parents cannot direct their anger at the cancer, they may target doctors, nurses, spouses, siblings, or even their ill child. Because anger directed at other people can be very destructive, it is necessary to find ways to express and manage the anger.
Life isn't fair, yet the sun still comes up each morning. To be angry because your child has a cancer is normal. The question is where to direct that anger. Sometimes I feel as if I'm angry at the entire world. In my heart, though, my outrage is directed solely at each and every tumor cell feeding on my child.
Expressing anger is normal and can be cathartic. Trying to suppress this powerful emotion is usually not helpful. Some suggestions from parents for managing anger follow.
Anger at the healthcare team:
Try to improve communication with the doctors. Scheduling time to talk away from your child's bedside may make it easier to have a more in-depth discussion.
Discuss your feelings with one of the nurses or nurse practitioners.
Ask the hospital social workers for advice on how to productively address your concerns if you become angry or frustrated with members of the medical staff, your insurance company, or others involved in your child's care.
Talk with parents of other ill children, either locally or by joining an online support group.
Anger at family:
Exercise a little every day
Do yoga or relaxation exercises
Keep a journal or make an audio recording your feelings
Cry in the shower or pound a pillow
Listen to music
Read other people's stories about childhood cancer
Talk with friends
Talk with parents of other ill children in person or online
Try individual or family counseling
Live one moment at a time
Anger at God:
Share your feelings with your spouse, partner, or close friends
Discuss your feelings with clergy or church, synagogue, or mosque members
Know that anger at God is normal
Pray or meditate
Give yourself time to heal
It is important to remember that angry feelings are normal and expected. Discovering healthy ways to cope with anger is vital for all parents.
My husband went to the gym and lifted weights during and after treatment to get his anger and worry out. I saw a therapist for a period of time, and I got on medications. I didn't want to go on meds, I didn't want to need that, but it leveled me out.
Excerpted from Childhood Cancer by Anne Spurgeon, Nancy Keene. Copyright © 2016 Childhood Cancer Guides. Excerpted by permission of Childhood Cancer Guides.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
1 Diagnosis 1
Signs and symptoms 1
Where should your child receive treatment? 2
Physical responses 3
Emotional responses 3
The immediate future 9
2 Bone Sarcomas 11
The skeletal system 11
Ewing sarcoma family of tumors 21
Information on standard treatments 26
3 Liver Cancers 27
The liver 27
Signs and symptoms 29
Hepatocellular carcinoma 34
Undifferentiated embryonal sarcoma 36
Choriocarcinoma of the liver 37
Liver transplantation 37
Information on standard treatments 40
4 Neuroblastoma 41
The sympathetic nervous system 41
The adrenal glands 41
Who gets neuroblastoma? 42
Signs and symptoms 44
Information on standard treatments 53
Newer treatment approaches 54
5 Retinoblastoma 55
The eve 55
Who gets retinoblastoma? 57
Signs and symptoms 60
Diagnosis and staging 61
Information on standard treatments 69
6 Soft Tissue Sarcomas 71
Muscles and connective tissues 71
Signs and symptoms 72
Diagnosis of soft tissue sarcomas 74
Non-rhabdomyosarcoma soft tissue sarcomas 82
Information on standard treatments 85
7 Kidney Tumors 87
The kidneys 87
Signs and symptoms of kidney tumors 88
Wilms tumor 89
Other types of childhood kidney cancers 96
Information on standard treatments 99
8 Telling Your Child and Others 101
Telling your child 101
Telling the siblings 107
Notifying the family 108
Notifying friends and neighbors 108
Notifying your child's school 109
9 Choosing a Treatment 111
Treatment basics 111
Standard treatment 111
The protocol 112
Clinical trials 113
Making a decision 121
The entire clinical trial document 123
Removing your child from a clinical trial 124
Protocol changes 124
10 Coping with Procedures 125
Planning for procedures 125
Pain management 127
11 Forming a Partnership with the Medical Team 155
Choosing a hospital 155
The tumor board 158
Finding an oncologist 158
Types of relationships 159
Getting a second opinion 165
Conflict resolution 166
Changing doctors 168
12 Hospitalization 171
The room 171
The floor 173
The endless waiting 174
Working with the staff 176
Staying with your child 177
Preventing mistakes 178
13 Venous Catheters 181
External catheter 181
Subcutaneous port 187
Peripherally inserted central catheter 192
Choosing not to use a catheter 195
Making a decision 196
14 Surgery 199
Pediatric surgeons 199
Types of surgery 200
Presurgical evaluation 203
The surgery 207
15 Chemotherapy 211
How chemotherapy drugs work 211
How chemotherapy drugs are given 212
Different responses to medications 213
Questions to ask the doctor 214
Guidelines for calling the doctor 215
Chemotherapy drug list 215
Chemotherapy drugs and their possible side effects 216
Prophylactic antibiotics 231
Colony-stimulating factors 232
Antinausea drugs used during chemotherapy 233
Drugs used to relieve pain 238
Topical anesthetics to prevent pain 243
Complementary treatments 244
Alternative treatments 244
16 Common Side Effects of Treatment 247
Bed wetting 247
Changes in taste and smell 249
Dental problems 250
Fatigue and weakness 253
Hair loss 255
Learning disabilities 258
Low blood cell counts 258
Mouth and throat sores 262
Nausea and vomiting 263
Rehabilitation needs 265
Serious illnesses 267
Skin and nail problems 269
Can pets transmit diseases? 270
17 Radiation Therapy 273
Children who need radiation therapy 273
Types of radiation therapy 274
Questions to ask about radiation treatment 277
Where should your child go for radiation treatment? 277
Radiation oncologist 278
Radiation therapist 278
Immobilization devices 278
What to expect during a radiation treatment 281
Possible short-term side effects 285
Possible long-term side effects 287
18 Stem Cell Transplantation 289
What is a peripheral blood stem cell transplant? 289
When are transplants necessary? 290
Choosing a transplant center 291
Stem cell harvest and storage 293
The transplant 294
Emotional responses 296
Paying for the transplant 297
Complications after transplant 298
Long-term side effects 302
19 Siblings 305
Emotional responses of the siblings 305
Sibling experiences 311
Helping siblings cope 318
Positive outcomes for the siblings 321
20 Family and Friends 323
Restructuring family life 323
The extended family 330
21 Communication and Behavior 347
Common behavioral changes in children 349
Common behavioral changes in parents 355
Improving communication and discipline 361
22 School 369
Keeping the school informed 369
Keeping the teacher and classmates involved 372
Keeping up with schoolwork 373
Helping siblings 373
Returning to school 374
Avoiding communicable diseases 378
After treatment 378
Federal laws 379
Section 504 of the Rehabilitation Act of 1973 380
Individuals with Disabilities Education Act 380
Individual healthcare plan (IHCP) 390
Your legal rights (Canada) 391
The terminally ill child and school 391
23 Sources of Support 393
Hospital social workers 393
Support groups for parents 394
Online support 396
Support groups for children with cancer 397
Support groups for siblings 398
Parent-to-parent programs 398
Hospital resource rooms 399
Clergy and religious community 400
Individual and family counseling 401
24 Nutrition 409
How treatment affects eating 409
What kids should eat 411
Making eating fun and nutritious 413
Vitamin supplements 417
What kids really eat 418
Parent advice 419
Commercial nutritional supplements 420
Feeding by tube and IV 422
25 Medical and Financial Record-keeping 425
Keeping medical records 425
Keeping financial records 429
Coping with insurance 433
Sources of financial assistance 437
26 End of Treatment and Beyond 441
Last treatment 442
Catheter removal 442
What is normal? 445
Initial follow-up care 448
Long-term follow-up care 449
Treatment summaries 451
Health insurance 453
27 Recurrence 457
Signs and symptoms 457
Emotional responses 459
Goal setting and treatment planning 459
Making a decision about treatment 461
28 Death and Bereavement 465
Transitioning from active treatment 465
Supportive care 469
Dying in the hospital 471
Dying at home 473
Involving siblings 474
The funeral 475
The role of family and friends 476
Sibling grief 482
Parental grief 483
A Blood Tests and What They Mean 489
Values for healthy children 489
Values for children on chemotherapy 490
Common blood tests 491
Your child's pattern 495
B Resource Organizations 497
Solid tumor organizations (United States) 498
Solid tumor organizations (Canada) 499
Solid tumor organizations (Australia) 499
Solid tumor organization (Germany) 500
Other service organizations (United States) 500
Other service organizations (Canada) 503
Other service organizations (Australia) 504
Educational and legal support 505
Financial help 507
Free air services (United States) 507
Free air service (Canada) 509
Free air service (Australia) 509
Medications (low-cost or free) 509
Sports organizations 510
Stem cell transplantation 510
Wish fulfillment organizations (United States) 511
Wish fulfillment organizations (Canada) 512
Wish fulfillment organizations (Australia) 512
Hospice and bereavement (United Stales) 513
Hospice and bereavement (Canada) 513
Hospice and bereavement (Australia) 513
C Books, Websites, and Support Groups 515
How to find the information you need 515
Online support groups 527