Some children have a smooth journey through the transplant process, but others bounce from one 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.

The transplant center was very clear about all of the potential problems. That was good because it prepared me. My attitude is watch for them, hope they don’t happen, if they do, then live with them. My daughter had an easy time with the transplant. She’s a happy third grader, she’s alive, and we feel so, so very lucky.

The biggest risk of transplant is that your child’s leukemia may return despite having undergone the transplant procedure. If this happens, your transplant physician and your child’s oncologist will talk with you about further treatment options.

Short-term side effects

The transplant itself can result in a number of immediate and late complications. One concern after transplant is rejection of the donor cells by the child’s body. The new stem cells must relocate and grow in their new body. If the immune system of the child with leukemia was not suppressed adequately, the new stem cells may be rejected. Rejection is uncommon with HLA-matched sibling or unrelated volunteer adult donor transplants (<5%). This risk is somewhat higher with partially matched and umbilical cord blood transplants. If rejection does occur, a second transplant may be required, often using stem cells from a different donor. The rest of this section presents (in alphabetical order) some of the major complications that can develop post-transplant and the experiences of several families who coped with these problems.

Eating difficulties. Almost all children undergoing SCT 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 intravenous (IV) nutrition (see Chapter 22, 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. This usually occurs a few months after the transplant.

GVHD. GVHD is a reaction of the donor stem cells (graft) against the patient (host). It may be triggered by HLA antigen differences, by the chemotherapy and radiation used to prepare the child for transplantation, or by infections. It affects approximately 30 to 50% of children who have undergone an allogeneic transplant and 10 to 12% of children who have a cord blood transplant. It affects a higher percentage of children whose transplants used mismatched marrow or marrow from an unrelated donor. Although GVHD is a serious complication, it may decrease the likelihood that the child will relapse after transplant.

Hemorrhagic cystitis. Hemorrhagic cystitis (bleeding from the bladder) may result from certain chemotherapy drugs (e.g., cyclophosphamide) used in your child’s conditioning regimen. To prevent this, during conditioning your child will 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 or blood clots in the urine, pain when urinating, and bladder discomfort.

Infection and fever. Virtually all children will develop a fever soon after the transplant. A cause of the fever, such as an infection, may or may not be identified. Although the immune system of healthy children quickly destroys any foreign invaders, this is not the case for children who have undergone a transplant. Until the new stem cells begin to produce a functioning immune system, children are at risk of developing serious infections. Although the probability of infection decreases after engraftment, the immune system does not function normally until 6 to 12 months after the transplant.

After Hunter’s stem cell transplant, we had to follow many precautions. We had to be careful when we took him out, avoiding large crowds or public places (especially those indoors). He needed to wear a mask when we took him to his doctor’s visits. We took him to plenty of outdoor places for fun.

To help prevent bacterial infections, children receive prophylactic antibiotics during the first weeks after transplant when their white blood cell count is low. IV 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.

After transplant, children are also susceptible to serious viral infections; the most common are herpes simplex virus, influenza, RSV parainfluenza virus (the virus that causes croup), varicella zoster virus (which causes chickenpox and shingles), and cytomegalovirus (CMV). Viral infections are often very hard to treat, so many centers use prophylactic medications, such as acyclovir, to prevent them.

Our daughter (age 9) had a stem cell transplant. It’s been several months and her white blood cell count is still low, but we have come to the conclusion that we can’t make her live in a bubble anymore. We are careful to avoid potential risks, though, such as being around large crowds of people.

Following are suggestions to minimize exposure to bacteria, fungi, and viruses:

• 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 such as chicken pox, polio, MMR (measles, mumps, and rubella), or FluMist®.
• Keep your child away from zoos, 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.

During recovery, children must redevelop immunity to common organisms, which may require redoing the usual childhood immunizations. You should discuss the plan for reimmunization with the transplant physician.

Mucositis. Mucositis (inflammation of the mucous membranes lining the mouth and intestines) and stomatitis (mouth sores) are common complications following an SCT. Symptoms include reddened, discolored, or ulcerated membranes of the mouth; pain; difficulty swallowing; taste alterations; and difficulty speaking. The majority of children undergoing transplant 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.

High-dose chemo kills your taste buds, and I wanted to only eat sweet or spicy food, anything else tasted like cardboard. I’d eat ribs with BBQ sauce. KFC® mashed potatoes and gravy was great. Drinking was hard. I used to suck on ice cubes. It’s gross when the lining of your mouth comes out. It just pulls out, it’s white, but it doesn’t hurt. It comes out during bowel movements, too. You can’t swallow because of the sores, so you have to spit a lot.

Veno-occlusive disease (also known as sinusoidal obstruction syndrome or SOS). Veno-occlusive disease (VOD) causes the flow of blood through the liver to become 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.

Our 15-month-old son had JMML and was treated with two allogeneic transplants from a matched unrelated donor [MUD]. He had several side effects including a reaction to cyclosporine (they switched to tacrolimus) and two bouts of VOD. One of the hardest things for him to cope with was the restrictions on liquids when he had VOD. He cried because he was so thirsty and it was hard for me to watch. His potassium went way up once from tube feedings and they were worried about his heart, but the level came back down and everything was fine. His ANC is beginning to stabilize after receiving monthly IVIG infusions.

Long-term side effects

Increasing numbers of children are being cured of their disease and surviving years after an SCT. The intensity of the treatment prior to, during, and after transplant can cause major effects that are not apparent for months or even years. This section describes a few of the possible long-term side effects that sometimes develop after transplant. Your child should have life-long follow-up from experts to identify and treat any long-term effects that develop after an SCT.

Dental development. Certain chemotherapy drugs, given in high doses prior to transplant, may result in improper tooth development and short or absent tooth roots in children who had a transplant when they were younger than age 5. Your child should have a comprehensive dental exam prior to the transplant and a dental follow-up every six to twelve months after recovery from the SCT.

Thyroid function. Children who receive only chemotherapy before transplant do not usually develop thyroid deficiency. If, however, your child receives radiation therapy to the head or neck (e.g., cranial radiation or TBI), she should have life-long monitoring for thyroid deficiency. Tablets containing thyroid hormone are effective in treating the problem, if it develops.

Puberty, fertility, and growth. Depending on prior treatment and the conditioning regime used, problems with puberty or fertility can develop. For this reason, boys who have gone through puberty should bank sperm, if possible, before treatment begins. You may also consider methods to preserve fertility in girls (e.g., freezing eggs before treatment). Any child or teen who had a transplant should be followed closely by a pediatric endocrinologist who can prescribe hormones, if necessary (testosterone for boys, estrogen and progesterone for girls), to assist in normal pubertal development and who can assess fertility in older survivors. Your child’s growth may also be affected by the agents used for pre-transplant conditioning, especially TBI. Growth should be monitored for years after transplant and consultation with an endocrinologist obtained if your child is not growing normally.

Second cancers. Children who receive an SCT have a small risk of developing a second cancer. The risk depends on the chemotherapy drugs given, whether any radiation treatment was given, and genetic factors.

Summary. Overall impact and long-term effects of an SCT on individual children and teens are not known. Your child’s oncologist can explain known risks given your child’s disease and treatment. You can also read about late effects in Childhood Cancer Survivors: A Practical Guide to Your Future, 3rd ed. by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. It is very important that any child who had a transplant be followed for life by an expert in the late effects of treatment for childhood cancer. Many of these late effects, if found early, are treatable.

The road of chemotherapy treatment was long and harsh, but transplant was a test of faith and patience. Knowing that Mia’s immune system would be zapped to the point of no return was scary. However, it felt like the last step in killing off any sign of cancer in my little girl’s body and a step closer to the end of this nightmare. Isolation was tough on both of us but once again the staff, the programs, the volunteers, and everyone in the hospital were amazing. Mia’s room was personalized and decorated just for her. She only asked to leave the room the day before we left for good, day 38! The nurses and doctors did everything in their power to make the whole transplant process go as smoothly as possible for all of us. They kept us informed, called us on their days off, helped me clean Mia up when she was sick, and even played dress up to help get her out of bed and to the shower. We survived, and Mia was discharged on Day 39. She walked out dressed like a princess.