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If a transplant has been recommended for your child or teenager, you may want to get a second opinion before proceeding.


The center closest to your home may not provide the best medical care available for your child....


If you are having difficulty getting your insurance company to pay...contact the Childhood Cancer Ombudsman Program....


It can be a physically and mentally grueling procedure, with the possibility of months or years of after-effects.


Keep your child away from crowds and people with infections.

Bone Marrow and Stem Cell Transplants


The following excerpt is taken from Chapter 19 of Childhood Cancer: A Parent's Guide to Solid Tumor Cancers , 2nd Edition by Honna Janes-Hodder & Nancy Keene, copyright 2002 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

STEM CELL TRANSPLANTATION, which includes bone marrow transplants, is a complicated procedure used to treat cancer and some blood diseases that were once considered incurable. There are three sources of stem cells: blood, bone marrow, or cord blood. In these procedures, the child is given high-dose chemotherapy, with or without radiation. Normal stem cells are then infused into the child's veins. The stem cells migrate to the cavities inside the bones where new, healthy blood cells are then produced.

Transplants, although frequently life-saving, are expensive, technically complex, and potentially life-threatening. Understanding the procedures and their ramifications at a time of crisis can be tremendously difficult. This chapter will present the basics of bone marrow and stem cell transplantation in simple terms, as well as share the experiences of several families.

Children who need transplants

At present, some types of tumors cannot be cured with conventional doses of chemotherapy, radiation, or surgery. Such tumors may be sensitive to extremely high doses of chemotherapy, but these doses permanently damage normal bone marrow. Transplants can replace damaged or destroyed marrow.

Many studies are currently under way using high-dose chemotherapy, with or without radiation therapy, followed by rescue with bone marrow or peripheral blood stem cells from the child (autologous transplants). For instance, high-dose chemotherapy with autologous stem cell rescue is incorporated in some current cooperative group and institutional studies for treating high-risk neuroblastoma. Tandem transplants (also called serial transplants, sequential transplants, and mini transplants), in which high-dose chemotherapy is repeatedly followed by stem cell rescue, are also being studied. The role of transplantation is being explored for children and adolescents with recurrent solid tumors such as metastatic Ewing's sarcoma, and recurrent Wilms tumor, hepatoblastoma, and rhabdomyosarcoma. Preliminary data from some of these studies is encouraging.

Hunter's high-risk neuroblastoma was treated with a double stem cell transplant. His own stem cells were harvested previously. He had enough cells collected to do three transplants. The third deposit of cells are frozen in case they're needed. The doctor told me that they could be frozen for a very long time. His protocol was very aggressive using chemotherapy, localized radiation, and total body irradiation as the last portion of his second transplant. It has been over a year and he continues to do extremely well.

If a transplant has been recommended for your child or teenager, you may want to get a second opinion before proceeding. To fully understand the issue, you may want to ask the oncologist some or all of the following questions:

  • What are all the treatment options?
  • For my child's type of cancer, history, and physical condition, what chance for survival does he have with a transplant? What are his chances with other treatment?
  • What are the short-term and long-term risks from the transplant? Explain the statistical chance of each risk.
  • What will be my child's short-term and long-term quality of life after the transplant?
  • What is the institution's procedure for this type of transplant?
  • What portion of the procedure will be outpatient versus inpatient?
  • How long will my child have to take medicines after the transplant?
  • What are the side effects of these medicines?
  • Is this transplant considered to be experimental? Have insurance companies been paying for this type of transplant?

Types of transplants

It is important to understand the type of transplant being recommended to enable you to better evaluate what has been proposed for your child.

Autologous marrow transplant

In an autologous stem cell transplant, the stem cells come from the child's own blood or bone marrow. Some transplant centers use various methods to try to kill (purge) any cancer cells that may be in the autologous product.

My son Matthew had both bone marrow and peripheral blood stem cells harvested in preparation for an autologous transplant. The bone marrow harvesting was done in the operating room under a general anesthesia. Matthew was returned to the recovery room afterwards experiencing very little discomfort, sporting two bandages on his lower back area.

A few months later he underwent stem cell harvesting. Unlike the bone marrow harvest, it required a three day hospitalization. The first step was to have a large catheter inserted in the femoral/groin area. The catheter was used for the actual apheresis of his stem cells. After two days of collection, we had secured enough stem cells to do several transplants. His catheter was removed a few hours later and we were discharged from the hospital. The only real complaint Matthew had was that he had to remain in bed for the entire three days. We had to be sure that the catheter wasn't dislodged through unnecessary movement. It wasn't a big deal for him, though. In fact, he took the catheter home as a keepsake.

After the marrow is harvested and treated, it is cryopreserved (frozen). The child then undergoes radiation and chemotherapy or high-dose chemotherapy alone to destroy any remaining cancer. The frozen marrow is then thawed, and reinfused into the child intravenously.

Courtney (age 18 months) received an autologous bone marrow transplant as part of her treatment for neuroblastoma. Her bone marrow was harvested eight days prior to day 0--transplant day. Two days after the collection she started high dose chemotherapy, including cisplatin, VM-26, Adriamycin, and melphalan. This took three days to complete and was followed by a day of rest. Two days before day 0 she began total body irradiation (TBI), given in fractions over three days. On the third and final day of TBI, Courtney was given back the bone marrow that had been harvested eight days earlier. That was nine years ago and she has been disease-free ever since.

There are ongoing studies to evaluate the risks and benefits of purged versus unpurged autologous transplants and determine whether autologous transplantation is better than conventional chemotherapy. It is clear from gene marker studies that most relapses following autologous marrow transplantation involve cancer cells infused with the marrow.

Peripheral blood stem cell transplant (PBSCT)

The bone marrow that doctors aspirate from the cavities in bones is full of stem cells-cells from which all types of blood cells evolve. Stem cells can also be found in the circulating (also called peripheral) blood, although in much lower numbers.

In a peripheral blood stem cell transplant (PBSCT), the child's own blood stem cells are harvested in a procedure called apheresis or leukapheresis. The pheresis is performed as the child is recovering from an intensive course of chemotherapy. As the blood counts begin to improve, the number of stem cells in the blood increases. Most centers also treat the child with GCSF (granulocyte colony stimulating factor) and/or GMCSF (granulocyte-macrophage colony stimulating factor) after the chemotherapy to further increase the numbers of stem cells in the blood.

Sean had an autologous stem cell transplant. His cells were collected in a process called apheresis. He was connected to a machine that was a lot like what is used for kidney dialysis. He had a catheter installed in his groin area that was used to connect him to the apheresis machine. His blood was removed through the catheter and run through a centrifuge which removed his stem cells and returned the remaining blood components back to his body. His stem cells were purged before they were given back to him on transplant day.

When the child's peripheral blood counts rise, blood is removed through a central venous catheter or a special temporary pheresis catheter and circulated through a machine that extracts the stem cells. The blood is then returned to the child. Each pheresis session lasts two to eight hours. The number of sessions required varies. Infants may need only one session, but children who have received extensive prior irradiation or chemotherapy may need six or eight sessions.

In rare cases, it is impossible to get enough stem cells from children who have recently undergone extensive chemotherapy and/or radiation. In these children, a bone marrow harvest may be able to collect an adequate number of stem cells.

Potential complications of peripheral blood stem cell apheresis include:

  • Hypocalcemia (low calcium in the blood). Your child may experience muscle cramps, chills, tremors, tingling of the fingers and toes, dizziness, or chest pain. He will be closely monitored during the procedure, and IV or oral calcium supplements will be administered to prevent this problem.
  • Thrombocytopenia (low platelets). A reduction of platelets can occur if platelets stick to the inside of the apheresis machine. Your child's platelet count will be checked before and after the apheresis, and a platelet transfusion will be given if needed.

  • Hypovolemia (low blood volume). A reduction in blood volume can occur at any time during the procedure and is more common in small children. Symptoms can include low blood pressure, rapid heart rate, lightheadedness, and sweating. To prevent this problem, the apheresis machine is generally "primed" with a unit of blood prior to the procedure.
  • Infection. If your child develops fever, chills, or low blood pressure, blood cultures will be obtained and IV antibiotics given.

Most apheresis procedures are safely performed on an outpatient basis, so you and your child can go home each evening. Some institutions, however, do require hospitalization throughout the procedure.

There are two types of peripheral stem cell transplants used in children with solid tumors:

  • Myeloablative chemotherapy. This uses doses of medicine high enough so that marrow cells are totally destroyed and will not recover without infusion of new stem cells. This is the traditional BMT employed for leukemia or diseases, such as neuroblastoma, that often harbor tumor cells within the marrow.
  • Myelosuppressive high-dose chemotherapy. This uses doses of medicine high enough so that marrow cell production is severely suppressed, but would eventually return over a period of 6 to 12 weeks. To shorten the recovery time to about 2 weeks (the time it normally takes with more conventional doses of chemotherapy), stem cells are infused. This method of peripheral stem cell transplantation allows doctors to expose the tumor cells to higher doses of chemotherapy than could be achieved with conventional dosing (yet somewhat lower doses than with bone marrow transplantation), while limiting the toxicity and potential high risk of death due to infection that would ordinarily be associated with simply allowing the child to recover on her own. This procedure is called serial transplant, sequential transplant, or mini-transplant.
Six-year-old Ethan had a stem cell harvest after his recovery from the first cytoxan doses he got. He was on Neupogen (GCSF), which is an injectable med that stimulates white cell release from the marrow. Neupogen has been a piece of cake for Ethan, doesn't hurt, partly because we have desensitized him to needles. Once he had enough of the stem cells in his bloodstream, he had a femoral PICC line placed because they needed a larger catheter to do this. The only down side was that he had to lay completely flat for about six hours, and collection took two days, so he had limited movement overnight between collections. Plan a lot of quiet activities! Videos, books on tape, handheld games, cards. He hated the no bathroom privileges and refused to use a urinal at all.

Other transplants

Allogeneic transplants use donor marrow from a family member or an unrelated person. Placental transplants use stem cells from the cord blood of a sibling or unrelated donor. Syngeneic bone marrow transplants are those in which the patient's donor is an identical twin. Since these types of transplants are only very rarely used to treat children with solid tumors (mainly children with neuroblastoma), they are not covered here.

Jeremy had a syngeneic transplant from his identical twin brother as his donor to treat his secondary AML after treatment for Ewing's. He received cytoxan and radiation in his conditioning regimen. One of the worst side effects he experienced was the nausea and vomiting. He was released from the hospital on day 9, readmitted on day 11 because of an infection, and discharged again on day 12. We stayed near the hospital and then we were allowed to go home on day 30. He has done very well.

For more information on types of transplants, write or phone BMT InfoNet, 2900 Skokie Valley Road, Suite B, Highland Park, IL 60035, (888) 597-7674. The BMT Newsletter is also electronically published on the Internet at http://www.bmtnews.org.

Choosing a transplant center

Choosing a transplant center is a very important decision. Institutions may just be starting a marrow or stem cell program, or they may have vast experience. Some may be excellent for adults, but have limited pediatric experience. Some may allow you to room in with your child; others may isolate the patient for weeks. Protocols vary among institutions as well. The center closest to your home may not provide the best medical care available for your child or allow the necessary quality of life (rooming in, social workers, etc.) that you need. Additionally, your insurance plan may require you and your child to go to a transplant center with which they have an existing contract.

The Autologous Blood and Marrow Transplant Registry (ABMTR) collects data on autologous blood and marrow transplants performed in North and South America. More than 450 transplant centers from 48 countries are listed on their Web site at www.ibmtr.org (click on transplant centers). You can contact them by phone at (414) 456-8325.

To help you learn about the policies of different transplant centers, here are some questions that you might ask:

  • How many pediatric transplants did the institution do last year? How many of the type recommended for my child?
  • How successful is your program? What are the one-year, two-year, and five-year survival rates for children with the same type and severity of disease? (Remember that some institutions accept very high-risk patients, and these statistics would not compare to those of a place that only performs less risky transplants.)
  • What is the nurse-to-patient ratio? Do all the staff members have pediatric training and experience?
  • What support staff is available (educator, social worker, child life therapist, chaplain, etc.)?
  • Will my child be in a pediatric or combined adult-pediatric unit?
  • What are the institution's rules on parents staying in the child's hospital room?
  • What on-site or nearby housing is available for families of children undergoing transplant? What are the costs for this housing?
  • What are the institution's anti-infection requirements? Isolation? Gown and gloves? Washing hands?
  • Describe the BMT procedure in detail, including anticipated complications.
  • Explain the risks and benefits of this procedure.
  • What is the average length of time before a child leaves the hospital? For a child who has been discharged from the hospital but whose home is far away, how long before he can leave the area to go home?
  • What will my child's life be like, assuming all goes perfectly? What will it be like if there are problems?
  • What are the long-term side effects of this type of transplant? What long-term follow-up is available?
  • Explain the waiting list requirements.
  • How much will this procedure cost? How much will my insurance cover? (This is not applicable in Canada, where provincial health programs cover the cost of the procedure.)

Many transplant centers have videos and booklets for patients and their families that explain services and describe what to expect before, during, and after transplant. Call any transplant center that you are considering, and ask them to send you all available materials.

The head of oncology at UCLA comes to our city every two months to follow up on the kids who have been treated there. It was a big draw to us to have post-transplant follow-up at home, rather than having to travel a great distance to get back to the center. The other thing was that children are not put in laminar airflow, and families aren't required to cap and gown, only scrub their hands. Since I'm allergic to those hospital gloves, this allowed me to stay with my daughter throughout. We did, however, call around to several centers to compare facilities, costs, and insurance coverage.

Making an informed consent is a serious decision when considering a life-threatening procedure such as a bone marrow or other type of stem cell transplant. It is very important to work closely with your oncologist and treatment team when making this decision. Do not hesitate to keep asking questions until you fully understand what is being proposed. Ask the doctors to use plain English if they are using complicated medical terms. Bring a tape recorder or friend to help remember the information. Many centers require the assent of children 7 to 18 years old in addition to the consent of the parent. Do not sign the consent form until you feel comfortable that you understand the procedure and have had every question answered.

Paying for the transplant

Stem cell transplants are expensive. Some transplants are considered standard of care, so insurers cover the procedure without problems. However, you will need to research carefully whether your insurance company considers the type of transplant proposed for your child to be experimental and therefore not covered. Most insurance plans have a lifetime cap, and many only pay 80 percent of the costs of the transplant up to the cap. Often, transplant centers will not perform the procedure without all of the money guaranteed. With time being of the essence, this can cause great anguish for families who struggle to raise funds or mortgage all of their belongings to pay.

Our first quote from the transplant center was $350,000, but we were able to negotiate for a lower price.

•  •  •   •  •  

My son died soon after the transplant. I hate to talk about the money, because I don't want people to think I begrudge spending it. I know that I would feel differently if the transplant had been successful, but I honestly think that we were misled about the real chance of success for his type of disease. We spent the equity on our house, plus took out a second mortgage. We will be paying it off the rest of our lives.

Most insurance companies will assign your child's care to a transplant coordinator or case manager, whose responsibility it is to make arrangements with the transplant center and handle financial issues. Getting to know your coordinator and letting him know your needs and concerns may provide an additional valuable resource for you during this stressful time.

If you are having difficulty getting your insurance company to pay for the transplant, contact the Childhood Cancer Ombudsman Program for help. The Blood and Bone Marrow Newsletter provides a free referral service to attorneys and not-for-profit organizations who may be able to help you. Fill in the form at http://www.bmtnews.org or phone (847) 433-3313.

You can also contact the Medical Care Management Corporation, which arbitrates disputes between insurers and medical centers. You can contact this organization by phone: (301) 652-1818 or on the Internet at http://www.mcman.com.

If you are not insured (or are underinsured) and must raise all or part of the necessary funds, contact organizations that provide financial assistance. They may be able to offer financial help, and can supply advice on how to quickly and effectively raise funds. Before working with any of these organizations, ask for all printed information available, and ask questions about any fees or costs associated with their services. Make sure that when the treatment is completed or the child dies, remaining funds may be applied to outstanding medical debts.

In Canada, each province and territory has a provincial health plan that covers the medical costs of transplant. However, there are still expenses that will need to be covered by the family. Children will often have to travel long distances to facilities that are capable of performing a bone marrow transplant. Travel, accommodations, and related costs have to be paid for by the parents. Bone marrow or peripheral blood stem cell transplants place financial burdens on Canadian families even though the country has a standardized healthcare system.

The transplant

Before the actual transplant, the child's bone marrow is destroyed or suppressed using high-dose chemotherapy with or without radiation. This portion of treatment is called conditioning. The purpose of the high doses of chemotherapy and radiation is to kill most or all of the remaining cancer cells in the body and to make room in the bones for the new bone marrow or stem cells. For allogeneic transplants, the conditioning also suppresses the child's immunity in order to allow the donor marrow a better chance to grow.

Conditioning regimens vary according to institution and protocol, and also depend on the medical condition and history of the patient. Typically, the chemotherapy is given for two to six days, and radiation (if part of conditioning) is given in multiple small doses over several days.

If your child receives conditioning chemotherapy as an outpatient, she will need to go to the transplant unit no later than the evening before the procedure for hydration. The transplant itself consists of simply infusing the marrow or stem cells through a central venous catheter or IV into the patient, just like a blood transfusion. The marrow or stem cells travel through the blood vessels, eventually filling the empty spaces in the long bones. Engraftment is the process in which new marrow begins to produce healthy white cells, red cells, and platelets.

I couldn't believe how beautiful the bone marrow was--a bag of shimmering red liquid. It just glistened. It meant life.

Various minor to major complications may occur during the bone marrow or peripheral blood stem cell transfusion. A transplant physician will monitor your child during the infusion. Possible complications are:

  • Abdominal cramps
  • Difficulty breathing
  • Slow heartbeat
  • Tightness in the chest
  • Chills
  • Cough
  • Diarrhea
  • Skin rash
  • Fever
  • Flushing
  • Headache
  • Changes in blood pressure
  • Nausea and vomiting
  • Unpleasant taste (usually relieved by sucking on hard candies or flavored liquids)
  • Emotional responses

    Stem cell transplantation can take a heavy emotional toll on the child, the parents, and the siblings. It can be a grueling procedure physically and mentally, with the possibility of months or years of after effects. Most transplant team members are trained extensively to meet the needs of the patient and family during the transplant and long convalescence. The team includes physicians and nurses, psychiatrists, social workers, chaplains, educators, nutritionists, and child life therapists.

    Leah was feeling very good and very healthy when she went in for her transplant. We lived near the transplant center, and she had a least twenty visitors a day. I think the visits and the nonstop telephone conversations really kept her spirits up.

    •  •  •   •  •  

    Levi's transplant experience was like watching someone wake up from a deep sleep. For the two weeks he was flat on his back, suffering greatly from mucositis and a tummy bug that caused diarrhea for three days straight. It was a real horror. Then one evening he sat up and said, "What's all that stuff?" He was referring to all the gifts that had piled up in the corner of his room. He opened every toy, got down on the floor and drew pictures of all the foods he was craving, and never looked back. He was disgusted that all food tasted like cardboard when he was feeling so hungry. It was like an instant transformation. I think my own recovery was longer. I believe part of me froze in order to survive the transplant, and it took a long time to thaw.

    Complications

    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 will develop problems, nor is there any way to anticipate whether the new development will be a mere inconvenience or a catastrophe. This section will present some of the major complications that can develop post-transplant, and the experiences of several families in facing these problems.

    Infections

    Most infections following transplant come from organisms within the body (e.g., cytomegalovirus, mouth and gut bacteria). Good hand washing by parents, visitors, and healthcare workers can help decrease the risks of infections from bacteria and fungi.

    The immune system of healthy children quickly destroys any foreign invaders; this is not so for children who have undergone a bone marrow transplant. The diseased immune system of these children has been destroyed by chemotherapy and radiation to allow the healthy marrow or stem cells to grow. Until the new marrow or stem cells engraft and begin to produce large numbers of white cells , post-transplant children are in danger of developing serious infections.

    During conditioning and until recovery of neutrophil counts, children are at high risk for developing bacterial infections. Fungal infections can also occur. The use of growth factors that stimulate and accelerate white blood cell recovery has decreased the time it takes for neutrophil engraftment, thus decreasing the incidence of serious infections. Your child may receive this medication one to two days following the transplant procedure. Additionally, your child will be evaluated carefully each day for signs and symptoms of infection. Potential sites of problems include the skin, mouth, perirectal area, and central venous catheter exit site. Report to your nurses immediately any new symptoms such as cough, shortness of breath, abdominal pain, diarrhea, pain on urination, vaginal discharge, or mental confusion. Antibiotics will be started promptly for any signs of infection. Some centers will use preventive (prophylactic) antibiotics even without signs of infection.

    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. These infections can occur up to two years after the transplant. Viral infections are notoriously hard to treat, so many centers use prophylactic acyclovir, granciclovir, or immunoglobulin to prevent them. CMV is usually preventable if the patient and donor are both CMV-negative and all transfused blood products are CMV-negative or filtered to remove white blood cells.

    Our daughter (age 9) had a peripheral blood 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.

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

    • Medical staff and all family members must 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 oncologist will determine the appropriate date for reinitiating immunizations.
    • Keep your child away from anyone who has recently been inoculated with a live virus (chicken pox, polio).
    • Keep your child away from barnyard animals and all animal feces.
    • Have all carpets shampooed before the child returns home from the transplant.
    • Avoid remodeling your home while your child is recovering.
    • Call the doctor at the first sign of a fever or infection.
    After Hunter's double 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 would take him to plenty of outdoor places for fun. I found the precautions easy to follow.

    Bleeding

    Bleeding may occur throughout your child's post-transplant recovery until adequate engraftment has occurred. Nosebleeds, bruising, and bleeding from the gums, urinary tract, or gastrointestinal tract are all common problems. Generally, these problems are handled with platelet transfusions. Most transplant centers strive to keep children's platelet counts at a safe level until bone marrow recovery has occurred. Generally speaking, platelets are the last type of blood cell to fully recover following bone marrow or peripheral blood stem cell transplant.

    Mucositis

    Mucositis (inflammation of the mucous membranes lining the mouth and gastrointestinal tract) and stomatitis (mouth sores) are common complications following stem cell transplants. 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.

    If mucositis occurs, your child will require frequent mouth care, modifications in diet, and pain medications. It is very important to try to coordinate your child's required mouth care with the administration of appropriate pain medications. Likewise, make sure your child receives pain medication before eating, drinking, or taking oral medication. When white blood cells return, 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, it doesn't hurt. It comes out during bowel movements, too, but you don't realize it. But, you can't swallow because of the sores, so you have to spit a lot.

    Eating difficulties

    The vast majority of children undergoing bone marrow or peripheral blood stem cell transplants require intravenous nutrition during their convalescence. Various factors contribute to this problem, including preexisting nutritional problems, side effects of conditioning chemotherapy, anticipatory nausea and vomiting, mouth sores, and infections of the gastrointestinal tract. Your child may experience a few, some, or all of these problems before engraftment occurs. Most transplant centers initiate intravenous nutrition promptly after transplant and continue until your child's appetite and ability to take in adequate calories by mouth have returned.

    Your child may require prophylactic 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. As with mucositis, your child's ability to eat and drink more normally is closely correlated with the recovery of blood counts.

    Veno-occlusive disease

    Veno-occlusive disease (VOD) 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 to develop 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 (intravenous hyperalimentation).

    Long-term side effects

    Increasing numbers of children are being cured of their disease and surviving years after a bone marrow or peripheral blood stem cell transplant. The intensity of the treatment prior to, during, and after transplant can cause major effects not apparent for months or years. This section describes a few of the major long-term side effects that sometimes develop after a transplant.

    The transplant center was very clear about all of the potential problems. That was good, for it prepared me. My attitude is watch for them, hope they don't happen, but if they do, then live with them. JaNette has lost about 50 percent of her lung capacity, probably from the radiation. She has to do daily treatments to keep her lungs from tightening up. She still is on cyclosporin one-and-a-half years later and flares up with the GVHD rash periodically. She can no longer tolerate gamma globulin, so her counts go down sometimes and she gets pneumonia. I know that she may get cataracts, develop heart problems, and many other things. But she had an easy time with the transplant, she's a happy third-grader, she's alive, and we feel so, so very lucky.

    Recurrence

    Despite the intensive chemotherapy and/or radiation given prior to the bone marrow or stem cell transplant, some children suffer a recurrence of the original disease. Recurrence is most likely to occur in the first two years after the transplant.

    Dental development

    Certain chemotherapy drugs, administered in high doses before the transplant, may result in improper tooth development and blunted or absent tooth roots in children under 5 years of age. Your child will likely have a comprehensive dental examination before the transplant and should have dental follow-up after recovery.

    Thyroid function

    Children who receive only chemotherapy do not develop thyroid deficiency as a result of treatment. Children who receive total body radiation have a 25 to 50 percent chance of developing low thyroid function due to a decreased production of thyroid hormone. Tablets containing thyroid hormone usually are effective in treating the problem.

    Growth and development

    Children who receive total body radiation or radiation to the brain may have altered growth and development. All children who have had a bone marrow or stem cell transplant should get periodic evaluations from a pediatric endocrinologist to monitor growth and development. Growth hormone is sometimes necessary for children who received radiation therapy.

    Puberty and sterility

    Children who had only chemotherapy during the conditioning regimen usually have normal sexual development, though not always. Those who had total body radiation, however, are particularly at risk for delayed puberty. (The incidence is lower if the radiation was given in several smaller doses.) All children treated by transplantation should be followed closely by a pediatric endocrinologist, who can prescribe hormones (testosterone for boys, estrogen and progesterone for girls) to assist in normal pubertal development. Girls are more likely to need hormonal replacement; boys usually produce testosterone but not sperm.

    Children who receive total body radiation usually (but not always) become sterile; that is, after growing up, girls will not be able to become pregnant, nor will boys be able to father children. Ability to have a normal sex life is not affected. Some children treated only with chemotherapy have remained fertile, and to date all offspring have been healthy. Adolescent boys may want to bank sperm prior to beginning their conditioning regimen. The banking of eggs is more experimental and takes much longer to accomplish; therefore, it is performed infrequently.

    Problems with the eyes

    Many children treated with total body radiation (TBI) develop cataracts. How the radiation is administered affects the child's chance of developing this complication. If the total body radiation is given in one dose, approximately 80 percent of children develop cataracts. If the TBI is given in smaller doses over several days (fractionated), the chances of developing cataracts is less than 25 percent. Most protocols use fractionated TBI.

    Naomi has had cataracts for the past six years as a result of radiation given prior to her BMT. She has approximately 50 percent cataract coverage in one eye and 66 percent in the other. She has maintained 20/20 vision in spite of the cataracts. The only thing that she does find, though, is that the contrast of light to dark is affected. For example, in school, the white chalk writing on the black board is difficult to read at times. Bright summer sun or the reflection of the sun off snow really bothers her. She wears good quality sunglasses with UV protection when she is out in bright sunlight.

    Decreased tear production may also be a late effect after radiation treatment.

    Second cancers

    Children who receive a BMT or stem cell transplant have a theoretical risk of developing a second malignancy (cancer). Because transplants are relatively new treatments for children and adolescents with cancer, the overall impact and long-term effects are not yet clear. Your doctor can explain known risks given your child's disease and treatment.


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