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Treatments | Bone Marrow Transplant

What is the Purpose?

A bone marrow transplant has the main purpose of allowing a child to receive high doses of chemotherapy or radiation. These high doses severely damage or kill the child's bone marrow and related leukemia. A bone marrow transplant introduces new marrow into the child's system in order to produce healthy blood cells to fight infections and to repair the body. Healthy bone marrow produces red blood cells, white blood cells and platelets.

Less than two and one half decades ago, bone marrow transplantation was an experimental procedure. It was considered an alternative treatment by the medical schools and medical journals at that time. Today, over 3,000 people receive allogenic BMTs (bone marrow from a third party). The number of autologous BMTs (the patient's own bone marrow) for children is increasing at this time. The National Marrow Donor Program estimates that the number of allogenic transplants would triple if available donors could be found. Research is active in corollary treatments with BMT such as interferon, growth factors, radioactive isotopes, and monoclona antibodies.

What are the types of BMTs?

Bone Marrow Transplants are described by the source of the bone marrow infused into the child's system. The three general types are allogenic, syngeneic, and autologous.

• Allogenic BMT - The source of an allogenic BMT is typically from the sibling, unless there is no matched sibling in which case the marrow comes from the parent or an unrelated donor. We found the key for success was how closely the donor's marrow matched our daughter's marrow. The physicians focused on six markers called human leukocyte antigens located in our daughter's white blood cells to judge the match. We found the process typically will take six months in the event the donor is a third party.

  Timing is critical. Only three or four patients out of ten have a sibling or parent that matches their bone marrow. The odds for an unrelated donor range from 1 in 10,000 to 1 in 20,000. Since the cost of testing siblings, parents and related family are small, it is highly recommended to determine if they match early on in the treatment program.

  The National Marrow Donor Program ("NMPD") was established in 1986 which has approximately 1.2 million registered potential donors in 1997. The NMPD generally estimates 120 days from the first request before bone marrow can be delivered. The goals of NMPD are honorable in attempting to expand the list of donors and thus improve the odds of finding matches, and to shorten the 120 day search time. A church drive for Jennifer Stroud added approximately 450 people to this list. Already one has been a donor for another candidate! A family cannot express the gratitude for this "gift of life" that comes from a donor. Information on the NMDP is set forth in Reference.
   

• Syngeneic BMT - A syngeneic BMT involves taking bone marrow from an identical twin. This BMT is rare, since identical twins represent approximately one birth out of every 270. Timing is critical here again in the event the identical twin's bone marrow is rejected based on the matching process or for other medical reasons.

  The benefit of a syngeneic BMT is since the genes are identical, there is little danger from graft versus host disease. The negative offset is since there is no graft versus host disease, the relapse rates are higher in patients who have received syngeneic BMTs versus those with allogenic BMTs.
   

• Autologous BMT - In an autologous BMT, the child's own bone marrow is used in the transplantation process. The bone marrow of the child is harvested when the child is in remission and then stored and frozen until the child is ready for transplantation. Important Note: We find that this should be seriously considered when the child is first in remission. Jennifer was in remission after her second chemotherapy treatment, and it would have been an ideal time for an autologous harvest of her marrow as an insurance policy in the event of future relapse. Once she relapsed, it was determined by the treatment team that an autologous transfer would not be helpful, since she was not in remission.

  The parents should investigate the policy of the treatment team and the hospital procedure regarding autologous BMTs. There is a wide range of views as to how the child's marrow should be purged (destroying undetected cancer cells in the child's marrow after harvesting), the use of peripheral blood stem cells in addition to the bone marrow infusion, and other medical procedures.

  Autologous BMTs are becoming more common than in past years. Since the child is not in danger of graft versus host disease, since it is his or her own bone marrow, the recovery period is easier. The disadvantage is that with graft versus host disease absent, the relapse rates are generally higher than in patients who received autologous BMTs.

  In the event a child's bone marrow is too severely damaged by previous chemotherapy/radiation treatment or weakened by the leukemia, the transplant may successfully be accomplished by only using peripheral blood stem cells. This is a new area that is receiving increasing attention in the medical profession.

What questions should I ask the treatment team and hospital?

The decision by a parent for a BMT is one of the most emotional decisions in a fight against leukemia. The informed parent will weigh the side effects and long-term risks against the possible benefits of a BMT. Therefore, it is crucial that a quantifiable list be used by the parent at this emotional time.

The following list is compiled from the Stroud family, other parents that have made this decision, and the Leukemia Society of America. Questions that should be asked include:

• How many BMTs and the types of BMTs has the treatment team/hospital performed for this child's type of leukemia and age group?
• Will the treatment team/hospital provide the parents names and addresses of prior BMTs as referrals?
• Is the treatment team/hospital part of a pediatric oncology group? If so, what is the proposed protocol, including chemotherapy and radiation treatments?
• How is the staff trained for BMTs and are there nurses designated only for BMTs?
• You should visit the hospital, the patient room and physical facilities available to the BMT patient and family.
• Ask about hotel/housing accommodations available for out of town families. Your child will be in the hospital for 30+ days and 1 - 2 months in the general vicinity for clinic visits.
• What is the isolation policy of the hospital? Can the parent spend the night with the child during this isolation period? What are the visitation rules for family and friends?
• Ask for a detailed summary of prior BMTs and their remission history for ninety days, one year and five years.
• Ask what are the main causes of death for your child's specific leukemia, type of BMT and age group?
• Ask the treatment team to discuss the acute, chronic and long-term effects of a BMT.
• What are the hospital's procedures for dealing with side effects? What are the most common side effects for your child's proposed BMT and age group?
• Ask to discuss with the hospital the availability of sperm banking for the appropriate age group.
• What religious support and services are available to the child and the family?

What are some helpful BMT hints for a parent?
 

• BMT Procedure - The procedure consists of a marrow harvest (up to 120 days for an unrelated donor), preparation of the child which generally consists of chemotherapy and radiation, day zero which is the bone marrow transplant day, an isolation period in the hospital, post transplantation from day 14 through day 30, and convalescence. A number of booklets in the Reference are available to help the parent prepare the child.
• Side Effects - A number of the side effects are temporary, such as hair loss, mouth sores, diarrhea, vomiting, and other side effects due to the chemotherapy and radiation. Although the side effects should not be minimized, they normally are temporary and will pass as the child recovers.

  There are other side effects that can be quite serious. These include infections, because the white blood count and defenses against infection are minimal, graft versus host disease that can have an effect on the liver, skin and gastrointestinal tract, bleeding, especially during the first four weeks after transplantation when the platelet production resumes, liver complications, the bone marrow transplant failing itself to graft because the donor cells do not grow and the patient's own cells may or may not begin to grow again, or a graft failure when the donor cells are inadequate in number and function poorly. Information and booklets regarding these items are set forth in the Reference section.
   

• Controlling Side Effects - Once the parent and child are made aware of potential side effects, then the next step is to minimize or eliminate them. A number of the side effects Jennifer experienced could be offset by other drugs, changes in her diet, and changes in her daily routine. Nutritional therapy was also effective to reduce side effects and increase the quality of her life. The Reference section lists past proven methods to help parents.
• Long Term Effects - The parent needs to weigh the long-term effects of the combined chemotherapy and/or radiation with the anticipated benefits from a BMT. Common long term effects may include physical strength and stamina reduction, some children have reduced pulmonary function because of lung damage, cataracts may develop between 3 and 6 years post transplant, thyroid dysfunction and stunting of growth sometimes occur. Certain cranial irradiation and intrathecal therapy can cause negative neurological problems in young children. Problems with sexuality and sterility can also occur when the children reach adolescence and young adulthood. Information that can help parents is available in the Reference section.
• Financial Considerations - We found most medical centers estimate BMT costs to be in excess of $250,000.00. Because of the expense, the centers require guaranty of funds in advance either from the family or insurance company. The parent needs to exercise caution. A number of health policies still consider BMTs to be "experimental," and therefore, may not provide full or oftentimes just partial coverage. Every parent should clarify the financial risk and obligations prior to signing a consent form for a BMT procedure.

  Review your insurance policy, if applicable, with the financial administrators at the hospital. Ask for specific categories of expenses that are covered, what out-of-pocket deductibles the family will have to pay, and any financial aid for items that are not covered. Policies often will provide more coverage for "centers of excellence." Be sure to review this with your insurance company before selecting a hospital.