Some children have a smooth journey through the transplant process, but others bounce from one life-threatening complication to another. There is no way to predict which children or teens will develop problems, nor is there any way to anticipate whether the new development will be a mere inconvenience or a major health crisis.

This section presents some of the major complications that can develop post-transplant (in alphabetical order) and the experiences of several families who coped with these problems.

Bleeding

Bleeding can occur in different ways while your child is recovering from a PBSCT, including the following:

•  Bruising

•  Bleeding from the gums, or the urinary or gastrointestinal tract

•  Nosebleeds

These common problems are usually managed with platelet transfusions. Serious bleeding can also occur in the lungs, stomach, intestines, or brain. Most transplant centers strive to keep children’s platelet counts at a safe level until blood cell recovery has occurred. In general, platelets are the last type of blood cell to fully recover after a PBSCT.

Eating difficulties

Almost all children undergoing PBSCT require nutrition support during their recovery. Some centers feed children using tubes inserted through the nose to the stomach or small intestine. This is a good choice if your child is not experiencing nausea and vomiting. Other children require IV nutrition (see Chapter 24, Nutrition). Most transplant centers start IV or tube feeding promptly after transplant and continue until the child’s appetite and ability to take in adequate calories by mouth have returned.

A variety of factors contribute to eating difficulties, including pre-existing nutritional problems, side effects of conditioning chemotherapy, anticipatory nausea and vomiting, mouth sores, and infections of the gastrointestinal tract.

Your child may require ulcer medications to coat the lining of the stomach or to decrease the amount of stomach acid produced. He may experience ongoing nausea, in spite of the fact that he is long past his conditioning chemotherapy. Ask to speak to the transplant unit dietitian and keep accurate records of what your child eats and drinks. Your child’s ability to eat and drink more normally is closely correlated with improved blood cell counts.

Hemorrhagic cystitis

Hemorrhagic cystitis (bleeding from the bladder) may result from certain chemotherapy drugs used in your child’s conditioning regimen. If your child receives a chemotherapy drug that has the potential to cause this problem (e.g., cyclophosphamide), she will probably also receive IV hydration and the drug mesna to help coat the bladder lining to prevent damage. Occasionally, hemorrhagic cystitis is caused by a bacterial or viral bladder infection. Signs of infection include blood in the urine (which may be obvious to the eye or microscopic), blood clots in the urine, pain when urinating, and bladder discomfort. If your child develops hemorrhagic cystitis or a urinary tract infection, she may receive antibiotics or antiviral agents, IV fluids, and pain medication as needed.

Infections

The immune system of healthy children quickly destroys any foreign invaders; this is not the case for children who have undergone a transplant. The immune systems of children undergoing PBSCT have been temporarily impaired by chemotherapy. Until the new stem cells begin to produce large numbers of white blood cells (2 to 4 weeks after the transplant), children are at risk of developing serious infections.

To help prevent bacterial infections, children receive prophylactic antibiotics during the first weeks after transplant when their white blood cell count is low. Intravenous antibiotics are started if the child has a fever. Fungal infections can also occur after transplant. The risk of fungal infections can be reduced by use of prophylactic medications such as fluconazole, and bone marrow growth factors such as G-CSF, that stimulate and accelerate white blood cell recovery. Your child will begin receiving prophylactic medications 1 to 2 days after the transplant. In addition, your child will be carefully evaluated each day for signs and symptoms of infection. Potential sites for problems include the skin, mouth, anus, and central venous catheter exit site. Report any new symptoms, such as cough, shortness of breath, abdominal pain, diarrhea, pain on urination, vaginal discharge, or mental confusion to the nurses promptly.

After transplant, children are susceptible to serious viral infections; the most common are herpes simplex virus, influenza, respiratory syncytial virus (RSV) parainfluenza virus (the virus that causes croup), and varicella zoster virus (which causes chickenpox and shingles). Viral infections are very hard to treat, so many centers use prophylactic medications, such as acyclovir, to prevent them. An organism that can cause a severe form of pneumonia is Pneumocystis jirovecii. Fortunately, the risk of Pneumocystis infection can be greatly decreased by using prophylactic antibiotics such as trimethoprim/sulfamethoxazole (Bactrim) or IV pentamidine.

During recovery, children must redevelop immunity to common organisms, which may require redoing the usual childhood immunizations. You should discuss the transplant center’s re-immunization policy with the transplant physician.

Preventing infection is the best policy for children who have had a stem cell transplant. The following are suggestions to minimize exposure to bacteria, viruses, and fungi:

•  Have medical staff members and all family members thoroughly wash their hands before touching your child.

•  Keep your child away from crowds and people with infections.

•  Do not let your child receive live virus inoculations until the immune system has fully recovered; your child’s oncologist will determine the appropriate date for getting immunizations.

•  Keep your child away from anyone who has recently been given a live virus (e.g., chicken pox, polio, FluMist^®).

•  Keep your child away from barnyard animals and all animal feces.

•  Avoid remodeling your home while your child is recovering.

•  Avoid areas of active construction where ground digging is occurring.

•  Shampoo all home carpets and rugs before your child returns home from transplant.

•  Bathe and shampoo all family pets prior to your child’s return home from transplant.

•  Thoroughly wash fruits and vegetables prior to eating and completely cook all meat, poultry, and fish.

•  Do not allow your child to share utensils, dishware, or drinks with other people.

•  Call the doctor at the first sign of a fever or infection.

Mucositis

Mucositis (inflammation of the mucous membranes lining the mouth and gastrointestinal tract) and stomatitis (mouth sores) are common complications following PBSCT. Symptoms include reddened, discolored, or ulcerated membranes of the mouth; pain; difficulty swallowing; taste alterations; and difficulty speaking. The majority of children undergoing transplants experience this problem.

Your child will require frequent mouth care, changes in diet, and pain medications. To make daily mouth care less painful, try to ensure that it happens after pain medicine has been given. Likewise, it helps to make sure your child receives pain medication before eating. When the bone marrow starts making white blood cells again, your child’s mouth will heal.

Pulmonary edema

Pulmonary edema (collection of fluid in lung tissue) is sometimes seen in children who have had a PBSCT. Symptoms may include rapid breathing, shortness of breath, cough, and bloody sputum. Children may also experience swelling of the hands and feet because of too much fluid in their body. Your child may require oxygen, diuretic medications (to help him urinate), corticosteroids, and temporary fluid restriction until the problem resolves.

Veno-occlusive disease

Veno-occlusive disease (VOD), also known as sinusoidal obstruction syndrome (SOS), is a complication in which the flow of blood through the liver becomes obstructed. Children who have had more than one transplant, previous liver problems, or past exposure to intensive chemotherapy are more at risk of developing VOD. It can occur gradually or very quickly. Symptoms of VOD include jaundice (yellowing of the eyes and skin), enlarged liver, pain in the upper right abdomen, fluid in the abdomen, unexplained weight gain, and poor response to platelet transfusions. Treatment includes fluid restriction, diuretics (such as Lasix^®), anti-clotting medications, and removal of all but the most essential amino acids from IV nutrition.