Some children have a smooth journey through the transplant process, while others bounce from one life-threatening complication to another. Some children live, and some children die. 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 catastrophe.

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 may occur in different ways throughout your child’s post-transplant recovery phase, including:

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

These common problems are generally 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 following PBSCT.

Eating difficulties

Almost all children undergoing PBSCT require intravenous (IV) nutrition during their convalescence. Some centers feed children using tubes inserted through the nose to the stomach or small intestine. This is a good choice if the child isn’t experiencing nausea and vomiting. Other children require IV nutrition (see Chapter 20, Nutrition). Most transplant centers initiate 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 dietician and keep accurate records of your child’s eating. Your child’s ability to eat and drink more normally is closely correlated with the recovery of blood 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, she will probably also receive the drug Mesna® to help coat the bladder lining. Occasionally, hemorrhagic cystitis is caused by a bacterial or viral bladder infection. Symptoms 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 will receive antibiotics, 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 cells (2 to 4 weeks after the transplant), children are in danger of developing serious infections.

To combat bacterial infections, children receive large doses of several kinds of antibiotics if they develop a fever any time during the first weeks after transplant when their white blood cell count is low. Fungal infections can also occur. Fortunately, bone marrow growth factors, such as Neupogen®, stimulate and accelerate white blood cell recovery. Your child will begin receiving this medication 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 the first month post-transplant, children are also susceptible to serious viral infections, most commonly herpes simplex virus, cytomegalovirus (CMV), and varicella zoster virus (causes chickenpox and shingles). These infections can occur up to 2 years after the transplant. Viral infections are notoriously hard to treat, so many centers use prophylactic acyclovir, granciclovir, or immunoglobulin to prevent them. The most common organisms that cause infections are CMV and pneumocystis carinii (a type of pneumonia). CMV is usually preventable if your child is CMV-negative and all trans-fused blood products are CMV-negative or filtered to remove white blood cells. The risk of pneumocystis carinii infection can be decreased by using prophylactic trimethoprim/ sulfamethoxazole or IV pentamidine.

During immune recovery, a patient must redevelop immunity to the common organisms that infect all children, which may require redoing the usual childhood immunizations. Children are tested 6 to 12 months following transplant for their immunity, and reimmunization is done (or not) based on the results of the testing.

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

• Medical staff and all family members must thoroughly wash their hands before touching the 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 neuro-oncologist will determine the appropriate date for getting immunizations.
• Keep your child away from anyone who has recently been inoculated with a live virus
• (e.g., chicken pox, polio).
• Keep your child away from barnyard animals and all animal feces.
• Avoid remodeling your home while your child is recovering.
• Have all carpets shampooed prior to your child’s return home from transplant.
• Family pets should be shampooed prior to your child’s return home.
• 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 PBSCTs. 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, modifications in diet, and pain medications. It is very important to try and coordinate your child’s required mouth care with the administration of appropriate pain medications. Likewise, making sure your child receives pain medication prior to eating often helps. When white blood cells return, your child’s mouth will heal.

Neurological complications

Children with brain or spinal cord tumors are at increased risk of developing neurological complications after transplant. Mental confusion, acute hearing loss, and expressive and receptive communication problems may occur. Fortunately, these are usually temporary. Your child may need assistance with communicating her needs and wants. In many cases, a communication or picture board is helpful until your child is able to communicate better. Speech therapy helps, and you should request this service if your treatment team does not suggest it. Patience and a supportive attitude are very important and will reassure your child should this complication occur.

Pulmonary edema

Pulmonary edema (collection of fluid in lung tissue) is sometimes seen in children who have had single or tandem PBSCTs. Symptoms include shortness of breath, cough, bloody sputum, fever, sweating, chest pain, and swelling of the hands and feet. Your child may require oxygen, diuretic medications, corticosteroids, and temporary fluid restriction until the problem resolves.

Veno-occlusive disease

Veno-occlusive disease (VOD) is a complication in which 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 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.