Recovery of the immune system after stem cell transplant

• Your child will be at high risk for infection during the first year after transplant, but especially during the first 3 to 6 months.
• Your child’s immune system will not be mature until at least 1 year after transplant, or longer if he/she has graft versus host disease and is on immunosuppressive medicines.
• Once your child’s immune system recovers, he/she will repeat all the early childhood immunizations. Your doctor or nurse practitioner will give you this schedule when it is time to restart them.  Do not let any other doctor or clinic administer these immunizations unless cleared by your SCT doctor.
• Please call the clinic immediately if your child is exposed to anyone with chickenpox, shingles or measles.  Your child must receive an injection of immune globulin within 2 to 3 days of exposure.

Activities of daily living

Personal hygiene.  It is still important for your child to follow a hygiene routine after leaving the hospital. Your child's skin is the most important barrier to infection. While your child is bathing, it is a good time to inspect their skin for rashes, redness, or drainage. Your child should bathe daily or more often if needed and use a lotion for dry skin.  You may use any commercial antibacterial soap and a lotion such as Eucerin, Lubriderm, or Cetaphil. Clothes should be changed daily. You may wash his/her clothes with any commercial laundry soap. The diaper area or anal area must be kept clean and dry. Always remember to wipe from front to back using a soft toilet tissue or wet-wipes, and wash your hands thoroughly afterwards. Keep your child's fingernails and toenails clean and short.

Mouth care.  It is very important to brush your child's teeth with a soft toothbrush at least twice a day as bacteria and yeast like to grow in the mouth. Your doctor may have your child continue with the chlorhexidine or heme/onc mouthwash, but it is still important to have your child brush his/her teeth. Avoid dental work until approved by your doctor. When your child’s platelet count is normal, a regular toothbrush should be used.

Sun/ultraviolet rays:  The chemotherapy and radiation that your child received makes the skin very sensitive to the sun so that your child may be sunburned with very little exposure.  Sunlight can also make GVHD worse.  Your child should avoid excessive direct exposure to sun, especially between 10 am and 4 PM, when the sun's rays are strongest.  If your child has to be in the sun, he should wear a hat, a shirt with long sleeves and long pants.  Apply a sunscreen with at least a sun protection factor (SPF) of 30, thirty minutes to one hour before going outside.  Sunscreen should be reapplied frequently while your child is in the sun.

Exercise.  Complications can be prevented by following a daily routine of exercise. A balance of rest and exercise is important. Your child needs at least 8 hours of sleep a night and should walk or have some type of light exercise activity daily. Light exercise every day is better than infrequent heavy exercise. Increase your child's activity gradually. Avoid contact sports, skating, rollerblading, trampoline use or riding a bicycle until your child's doctor has approved it.

Diet. A well-balanced and nutritious diet helps the body stay healthy. If your child's appetite has decreased, try to increase his/her caloric intake by eating more frequent, smaller meals. Do not eat raw fish, meat, or eggs. Ask your doctor when your child may start to eat raw fruits or vegetables. To avoid infections, your child must not share drinking glasses or eating utensils.  For more information see the nutrition section of this handbook.

School re-entry. It is very important for your child to continue with school; however, infections are easily transmitted in school rooms. We recommend that schooling be continued at home with homebound schooling during the first several months after leaving the hospital. This will vary from patient to patient so discuss this issue with your doctor. Your social worker can help you arrange your child's homebound schooling.

Bleeding. After your child is discharged, he/she will continue to have blood counts drawn in the clinic for a platelet count (and other blood counts). When your child's platelet count is low, he/she may bleed or bruise more easily than usual. Never give your child aspirin or ibuprofen (Advil or Motrin) because these medicines make the platelets less effective. Your doctor will continue to order platelet transfusions when your child's platelet count is low or if he/she has any signs of bleeding. If bleeding occurs, apply direct pressure to the area. For nosebleeds, pinch the nostrils together for at least 10 minutes, and do not lay your child down. Report any of the following symptoms to the SCT team immediately:

• excessive bruising or small red or purple dots on skin
• gum bleeding or prolonged nosebleeds
• prolonged vaginal bleeding
• blood in urine or black and/or bloody stools
• headache

Nausea and vomiting. Some children will never have nausea or vomit once they go home; others may feel mildly nauseated or vomit occasionally. Most nausea and vomiting can be prevented by various medicines such as Zofran. Avoiding strong odors that may make your child feel sick may help. Children can often keep down small sips of fluid when they feel nauseated.  Try giving your child one or two sips of carbonated beverages or apple juice every 15 to 30 minutes, but don't force your child to drink. Cold foods may be better than hot ones.  Some parents find zip-locked plastic bags useful to keep in the car and while away from home in case your child starts vomiting. These bags won't leak or spill after being sealed and will contain the smell.  Notify your doctor if your child has not been able to keep anything down for 3-4 hours or is showing signs of dehydration, such as: 

• decreased number of wet diapers or times your child goes to the bathroom,
• strong smelling urine,
• no tears when your child cries,
• dry tongue or dry inside of mouth, or
• eyes that look sunken in.

Nutrition

Changes in Appetite. Although a well balanced diet is needed for a healthy body it may be hard to get him/her to eat enough of the foods needed to grow. Even when they feel well, children are picky eaters. For your child, whose body has to cope with growth and the side effects of treatment, eating a good diet is especially important. Not all children will have trouble eating. At each clinic visit we will keep track of your child’s height and weight. If your child is losing weight or seems to be gaining too much, your doctor or nurse practitioner will discuss these issues with you. Some tips to help your child eat include:

1. Be flexible about meals. Small, frequent meals throughout the day are often better than three larger meals. Let your child eat when he/she is hungry, and don't force your child to eat if he/she is nauseated.
2. Make food fun.  Decorate it with food coloring or by making shapes your child likes. Draw faces on pancakes, or add sprinkles to desserts.
3. Let your child help with cooking if he/she is old enough. This sometimes creates more interest in the foods prepared.
4. Praise good eating. Try using rewards to encourage it, but do not turn mealtimes into a battle or punish your child for not eating.
5. Add calories to foods to make every mouthful count. Try adding cheese, butter, whole milk, or granola to your child's snacks and meals.
6. Learn which foods taste different to your child and do not serve foods that taste bad to your child. Many children complain of a metallic taste in their mouths. Providing mouth care prior to eating may help.
7. Use flavorful seasonings like basil, oregano, or rosemary. Use bacon or onion to add flavor to vegetables.
8. Offer your child tart foods if he/she likes them. Foods like lemons, limes, or sweet tarts stimulate the salivary glands and help improve taste.
9. Ask to talk with the dietitian for more suggestions on ways to help your child with eating problems.

Healthy eating. Some foods like raw vegetables and raw or undercooked meats can carry a lot of bacteria. Bacteria can cause illness. Usually our bodies can kill the bacteria in foods; however, after a transplant it is harder to kill the bacteria and there is a good chance of getting sick. This is why it is important to be careful about cooking, storing and cleaning food. Stem cell transplant patients are not able to fight off bacteria for about six months to one year after their stem cell transplant. Eating foods with a lot of bacteria can cause the following symptoms:  nausea, vomiting, diarrhea, fever or general weakness.

• High bacteria foods (high risk) are:  raw or undercooked poultry, meat, fish, unrefrigerated milk or milk products, or rotting vegetables or fruit.
• Low bacteria foods (low risk) are:  well cooked meats, fish, poultry, cooked vegetables, washed raw fruits and vegetables, well refrigerated dairy products, dairy based condiments, or pasteurized products.
• Preventing food-borne illness.  Good hand-washing, both before and during cooking of food. In addition, it is important to wash the counter-top and cooking utensils with soap and hot water to decrease the spread of food-borne illness, especially if cooking high bacteria foods.

Rules for safe cooking at home

• ALWAYS your wash hands before preparing food.
• Never cool or defrost foods at room temperature, such as on the counter top.
• Cook foods until they reach the right temperature.  Cook all beef, poultry and pork until it is well done, no pink juices. Cook eggs so that both the white and yolk are firm, nothing runny should be eaten. Reheat all foods until they are steaming hot.
• Hold foods at the right temperature. Do not let meats or gravies sit out at room temperature. If hot foods are going to be eaten later, either keep the food hot on the stove or cool them quickly in the refrigerator. If cold foods are going to be eaten later, keep them in the refrigerator or freezer.
• Wash all fruits and vegetables well before eating or cooking them.
• Only drink milk that is pasteurized, never drink "raw" or "fresh" milk.
• Always allow the patient to take the first helping of a family style dish such as a casserole.
• Do not allow the patient to eat left-over’s that others have eaten from. Any leftover must be used within 24 hours.
• Get rid of all foods with expired dates.
• Purchase an antibacterial soap for hand and dish washing. Keep all food preparation surfaces clean with an anti-bacterial cleaning product.

Medicines

Your child will be taking many different medicines after transplant. It is best to develop a routine for giving your child’s medicines, such as mealtime or bedtime. A chart may help remind you of the purpose and schedule of medicines. Be sure to ask your nurse any questions about the medicines your child is taking. We want you to know all the medicines your child is taking. In addition, please remember:

• Do not give your child any medicines that are not prescribed by your doctor including any over-the-counter medicines such as aspirin or laxatives, or herbal remedies without permission from the doctor.
• Do not allow your child to drink any alcoholic beverages such as wine, beer, or any mixed drinks.
• Bring all your child's medicines to each clinic visit.
• If your child vomits immediately after taking his/her medicines, repeat the dose after the nausea has subsided but within 30 minutes. If your child is unable to keep the medicine in his/her stomach for at least 30 minutes, call the clinic or inpatient charge nurse (after hours/holidays).
• If you have any questions or concerns about your child's medicines call the clinic nurses at (832) 826-0870 or inpatient charge nurse after hours at (832) 826-0860.

Return to normal activities after transplant

Your child will be allowed to return to school around 6 months after transplant depending on your child’s condition and approval from attending doctor. Your social worker and child life specialist may arrange for a school visit if you feel it will be helpful. A letter will be sent to the school explaining special precautions for your child.

The central catheter will be removed when your child no longer needs it for transfusions or medicines. This time frame can vary from several months to a year or longer.

Your child will be in social isolation (avoid crowds, public places, restaurants) until recovery of his/her immune system which is usually at least 100 days after transplant. Your doctor will inform you when it is okay to resume some normal outside activities.

Even when your child is off social isolation, it is very important to continue to wash hands before eating, after touching dirty items, and after using the bathroom. Use a paper towel to turn off the faucet in public restrooms after washing your hands. Carry hand-washing lotions/liquids on public outings where there are no sinks and soap to wash hands. It is wise to avoid unclean restaurants. Call your doctor immediately if your child has any of the following:

• Fever of 100.5or higher
• Cough, shortness of breath, difficulty breathing
•  Redness, swelling or pain in your throat, eyes, ears, joints or abdomen
•  Nausea, vomiting, diarrhea, or signs of dehydration
•  Rectal pain or burning on urination
•  Headache, dizziness or difficulty walking
•  Any signs of bleeding
•  Redness, tenderness or discharge from the central catheter site
•  Exposure to chicken pox, shingles, measles

How to contact us

Monday – Friday, 8:30 a.m. to 4:30 p.m., call the outpatient clinic at (832) 826-0870. During nights, weekends, or holidays, call the charge nurse on the inpatient unit at 832-826-0860.