Advice From HLH/BMT Parents

Things We Have Learned

1. Don’t get caught up in hospital rankings. They are businesses and they know that good a ranking helps their “sales”. Countless hospital employees have told us that if the ranking is something that is important to the hospital they will play “the game” and do the things that will help them get a good ranking. They are then able to use that ranking as an advertising tool to attract more customers. If you are interested in the ranking, then look at what the criteria is for the ranking-you will see very little of it will impact actual patient care.

2. If you or a loved one gets diagnosed with a rare or life threatening illness go where the experts are located for that specific illness. The doctors that have dedicated their life to that disease, you will then have access to the latest research, drugs and treatment. By the time it is published for everyone else in the medical community, it might be too late.

3. EXPERIENCE-EXPERIENCE-EXPERIENCE. Albert Einstein said it best, “The only source of knowledge is experience.” Cincinnati Children’s Hospital is the biggest pediatric bone marrow unit in the United States. Last year they did 108 transplants! There are currently 7 children in-patient on the BMT floor with us right now who have HLH. Just last year, one of the doctors here created HLH in a mouse and was the first doctor in the world to do so. The reality is that the more you do something the more you learn. Volume truly equals success.

4. You need to feel that you are part of a team. The doctors need to be visible, accessible and present. Not just some of the time but all the time. You need to be heard and have your thoughts and opinions taken seriously.

5. Disease does not take a break and neither should your hospital. All tests, specialists and medicines need to be available all the time and not just Monday through Friday.

6. Don’t be afraid to speak up. Oh how we wish that someone had stepped forward early in the process with Andrew and had pushed us to go check out Cincinnati. The chemo protocol might be the same from one hospital to the next but it is the knowledge that is gained during the transplant process every day that truly matters.

7. Listen, ask questions, take notes and keep records. It is your duty and responsibility to be your child’s number one advocate. No one loves your child as much as you do and therefore you must never rest or become complacent. If you feel things are not going right you must climb the ladder until you reach the person or persons to make sure you are heard. Most importantly, if you are unhappy with your doctor or hospital, then leave. It is a matter of life and death.