Questions to ask the transplant team
Choosing a transplant center:
Do not consider a facility based solely on geographical location. Different centers have different expertise and you should go to one that is an expert in the type of transplant that your child will receive. Contact several facilities and ask?
What tests are done pre- and post-transplant?
What is your center's success rate for my child's type of leukemia?
How many pediatric bone marrow transplants have been done at your facility?
Do you do cord blood transplants and if so how many have you done?
Do you have a pediatric intensive care unit on site? (This may seem like a given, but not all do.)
Do you have a separate pediatric BMT unit? (Many combine both adults and pediatrics in one unit. It is safer if you are in a unit with nurses who only care for children and are pediatric nurses.
(There are very good online links for choosing a transplant center, see bone marrow/stem cell, cord blood transplants on the ACCO/Candlelighters site.)
What is the best match we can use (marrow or cord) and what is the back up plan if engraftment fails?
Is a sibling match better than an unrelated match for my child's type of leukemia?
What are the statistics for relapse after a sibling transplant versus an unrelated donor?
If my child relapses after transplant what options do we have?
Cord blood transplants:
Parents stress to consider cord blood transplants. Cord blood transplants do not have to be a perfect match, and thus might be easier to find.
Duke is the largest pediatric bone marrow transplant center in the country. They do related and unrelated bone marrow/stem cell transplants as well as cord blood transplants. Dr. Kurtzberg is well-known as an expert in pediatric cord blood transplants. Contact her at 919-668-1100. Duke is the number one place for cord blood transplants.
Questions to ask the transplant team:
How many doctors are a part of the transplant team?
Is the patient ever left in the hands of a resident? NO is a must!!
Are patients assigned the same set of nurses while inpatient for transplant?
What chemo/radiation regimen will be used pre-transplant conditioning? How many facilities use this same pre-conditioning treatment for the same type of transplant that my child has?
Are specialists available when complications arise?
What prophylactic medications are used? (Anti-fungal and anti-viral drugs: should be diflucian and acycloviar.)
What are the most common complications post transplant? (Fungal infections, VOD, etc.)
If a serious complication occurs what stronger drugs are provided? (Gancyclivar for CMV, defibrotide for VOD.)
Is defibrotide (A phase II drug) available and how quickly is is available if VOD does occur?
What treatment is used for mucositis? Ask them if Kepivance is available for pediatric use. If used pre-transplant it is effective in preventing mouth sores.
What are the neutropenic diet restrictions? (So you can prepare the child for the major changes in his/her eating habits.)
What is the average engraftment time?
What are the chances of engraftment failure?
What anti-rejection drugs will be used during conditioning and post transplant? (Cyclosporine, steroids, Prograf)
Are diagnostic BMA's and LP's done post-transplant?
Is there any additional chemotherapy post transplant?
At what point post transplant do you transition patients from IV meds to oral meds? (Most meds are absorbed better through IV post-transplant. Also, your child will likely have a fragile digestive system and using oral meds can be a huge mistake. Push for IV meds as long as possible!)
Will there be any scheduled needle pokes necessary during the transplant and post transplant, even with a central line in place? (Needle pokes are very traumatic and need to be avoided. For example, GCSF can be given via lines and not injections.)