Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Dealing with side effects of treatment

Children with cancer are a special sub-set of cancer patients in general. The side effects of chemo and radiation affect them in much the same was as adults, however, they can't always express what they are feeling nor can they understand why they feel the way they do. It's a time for parents to be gentle, patient, and observant to try to ease their child's way through the duration of the treatment. Parents become quite adept at being a cancer parent, and this section aims to pass on some of the knowledge of experienced cancer parents to the newly initiated. Included are pain and nausea control issues, mouth sores, mouth care during treatment, sore bottoms, hair loss, hearing loss, nutrition, neutropenic diets, feeding a child on steroids, and whether or not pets are a good idea for a cancer child. For education issues, please see Back To School in the cancer family issues section.

Note: This section has health/medical information. It was not written by a health care professional. The medical references are: the web sites listed in the text below at the individual topics, the author's personal experience as well as that of members of the online ALL discussion list, a booklet that Children's Hosptial sent home with the author's family, and the book:

Controlling Pain

Controlling pain during procedures

Great reference: Boston Medical Center Pediatrics on pain control during procedures, accessed 2011.

EMLA®. This is a cream that contains lidocaine/prilocaine. It's commonly used for all needle pokes, including those into the port. It takes 1-2 hours to work really well, but the kids say that it stops all the pain of the needle going through the skin. In the US, EMLA® is a prescription medication. You place a dollop on the skin then cover it with a special bandage which holds it in place and prevents it from rubbing off on clothing etc.

Numby Stuff. Numby Stuff uses iontophoresis, a quick method of providing local skin anaesthesia.The doctor or nurse places a patch over the area which needs to be numbed - this patch contains medication that will numb the skin. Another patch that acts as a ground is placed on th skin in another area. A small hand-held electronic unit is than connectd to the patches and turned on to begin the treatment. umbness wbegins in about 10 minutes. It penetrates up to 10 mm, as opposed to 3 mm like EMLA®.

Ametop®. (Tetracaine HCl) This is a gel containing an anaesthetic called "amethocaine"; it works much like EMLA®. It takes 30-45 min to take affect and is recommended for use before starting IVs. It's available over the counter in the UK. (A cute page on Needlephobia and Ametop®.) Ametop® should not be left on the skin for longer than 60 minutes and numbs the skin for 4-6 hours. Some children have a slight allergic reaction to Ametop®; if a blister forms, remove the Ametop immediately. (Smith & Nephew Healthcare Limited, Goulton)

Freezy spray. Ethyl chloride spray is used immediately before the procedure to numb the surface of the skin.

Sedation or general anesthesia. Several different drugs can be used for sedation during procedures: Versed, Propofol, and Ketamine. These are used only under the supervision of an anesthesiologist. Versed (often used in combination with a pain reliever) results in your child being sedated but awake; Propofol causes them to lose consciousness; Ketamine causes them to lose consciousness for a longer period than does Propofol, sometimes it causes hallucinations upon awakening.

Relieving pain caused by chemotherapy or surgery

Pain Control Issues. Leora Kuttner produced a video called "No Fears No Tears 13 Years Later" concerning pain control issues. It's a documentary that explores the long term benefits of pain control for children using interviews from adult survivors who were featured in her first video when they were children. Follow the ped-onc link below for some pediatric pain control tips. The video might be in your hospital's resource room.

The following resources cover ways to relieve pain and theories/ideas on pediatric pain management:

Anti-nausea drugs/methods

Most nausea due to chemotherapy can be prevented by using Ondansetron HCl or Granisetron. If your doctor does not prescribe these, ask for them.

Brand names

Ondansetron HCl: Zofran®, Zuplenz®, Emeset®, Emodan®, Setronax®, Emetron®, Ondeme®t, Ondavell®, Ondansetron®)

Granisetron: (Kytril®, Sancuso®)

Mouth Care: Dental care and mouth sore care

As editor, I was lucky to "meet" online a dentist, who was also [unluckily] the parent of a child with cancer. Mark worked with me to create an extensive web page on mouth care, including dentistry concerns and mouth sore prevention and treatment. His procedures for home care are both dentist- and child- approved. Also, many parents have lent their advice on mouth sore problems.

Risk of Infection During Treatment

The chemo drugs and radiation therapy given to childhood cancer patients cause the usual side effects that the man-on-the-street associates with chemotherapy: hair loss and nausea. They also cause suppression of the bone marrow. Thus, red blood cells, white blood cells, and platelets are not formed and your child will feel weak. Without platelets, they will be unable to stop bleeding if cut. Low red blood counts and low platelets can cause the doctor to order a transfusion. These counts will be monitored periodically by the treatment center, but if you note unusual fatigue or bleeding, call the oncologist.

White blood cell fight infection and white blood cells are monitored closely throughout the treatment. If the ANC is too low, your child cannot fight off infection. (See Blood Counts section.) If a childhood cancer patient runs a fever of 101, parents are usually advised to immediately call the clinic. Infections develop rapidly in these patients. There is an oncologist on call 24 hours a day at the hospital to help the parents. Fevers are not taken lightly with cancer patients. They usually mean the child has to be admitted to the hospital for a minimum stay of 48 hours.

Infections can be fungal, bacterial, or viral. Fungal infections can be particularly nasty in a cancer patient. Sometimes the infections are due to the medi-port lines; sometimes there is a fever and the doctors cannot find an infection.

Site on fungus infections:

Chickenpox poses a real threat to leukemia patients. If your child has not yet had this disease, your oncodoc team will coach you on how to approach childcare/school situations which might expose the cancer patient to chickenpox. (See The Chicken Pox Letter.) Shingles (caused by residual chicken pox virus) can occur in immune-suppressed children/adolescents; be aware that a painful rash might be shingles and contact your oncologist immediately.

During treatment, patients cannot receive immunizations, unless directly approved by the oncodoc. And, family members cannot get immunizations of live viruses during certain stages of treatment, because they could pass the infection to the cancer patient.

A rare side effect that has been reported by at least one online cancer-kid family is a condition of fluid/electrolyte imbalance to the point of SIADH: Syndrome of inappropriate antidiuretic hormone secretion. The symptoms of SIADH include weight gain, loss of appetite, nausea, vomiting, headache, muscle weakness/spasms/cramps, fatigue, abnormal mental status, and convulsions. Reference:

Fever

Fever can be a sign of infection in children who become immune-compromised during treatment for cancer. If your child has a port, fever will be monitored very carefully. Fever is also seen with neutropenia (low ANC, see blood counts) when there is no infection present. The following journal article is a good reference for fevers in immune-compromised children.

Sore Bottoms

While undergoing aggressive chemotherapy treatments, some infants and even older children develop rashes or painful, sometimes bleeding open sores on their bottoms. Most of the treatments for this condition are now available over-the-counter (and are usually sold as diaper rash treatments). Our parents highly recommend:

Hair Loss

Hair loss can't always be predicted, as some kids keep their hair on a particular chemo drug while another loses it, and still another has hair that just thins. But, at some point during treatment, most kids lose their hair. If/when your child is bald, check out the wigs and hats resources:

Hearing Loss

The platinum-based chemo drugs can cause hearing loss. Two resources to help parents deal with this are below.

Food Issues

Feeding the child with cancer presents a variety of problems. Some children do not want to eat at all and have to have a NG tube. Some children like only a few foods, as their taste buds are affected by the chemotherapy. On steroids, kids usually have a huge (and sometimes entertaining) appetite. When neutropenic (see the blood counts page), they should not be fed certain foods. Consult your doctor for guidelines.

Neutropenic diets:

Parent's stories on feeding the 'roid raged cancer kid.

Pets

Different oncologists have different advice on whether or not pets are allowed around neutropenic children. Here are a couple articles on the topic:

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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