My daughter, Amber (15yo), was diagnosed with severe aplastic anemia on May 18, 2001. Since her brother was not a match, she started immunosuppressive therapy on May 27, 2001 at Mass General Hospital in Boston. Her therapy consisted of ATG/Cyclo/Prednisone. Unfortunately, she developed pneumonia, sepsis (psuedomonas in her blood), and renal failure five days after therapy began. 

She was taken to the ICU, placed on a ventilator, and was put in a drug induced coma to allow her body to heal. By the grace of God, (after two and a half weeks), she was transferred back to a regular pedi floor where she has endured intense physical and occupational therapy to be able to walk and use her hands once again. She has fully recovered from her bacterial infection, but now has a severe case of gastris and is having difficulty eating due to intense nausea and frequent vomiting. 

Her team of doctors, along with the nursing staff, are doing a terrific job of coming up with solutions and taking into account Amber's psychological state, as well as her physical self. We are hoping to get her to a point where she can go home before she is to be transferred to Children's Hospital Boston (affiliated with the Dana Farber Institute) for a MUD BMT. Her doctor's feel this will offer her a better chance at a long-term remission or "cure", given her age and the advances of MUD BMT. 

However, we are scared to death of this disease and what a person has to go through to beat it, too bad there are no guarantees in life! Her being in the ICU was very scary with all the machinery and medications they were pumping into her! She is carefully monitored by a team of doctors from every discipline-hematology, oncology, urology, cardiology, pulmonary, GI, psychology, and physical therapy- and they are very aware of treatments available. 

They are very good addressing and concerns or questions we may have- the child life specialist (person who runs the playroom and offers diversions for ped patients) is the one who gave me this web address and the laptop computer to communicate with others and research more intensly. (Although that is all I have been doing for the past 2 months, and frankly, the more I research the more I am frightened and overwhelmed!) 

I have spoken with many young people and older people who have gone through related and unrelated matched BMT's successfully with survival of up to 20 years so far. However, I have not met anyone with AA who has successfully made it through, but have read many success stories. I have been reviewing your website the last month and think it is a great site. I will tell everyone I know about it, it is terrible to think you are alone and no one understands. 

I come from a very large family and we all felt helpless when Amber was diagnosed, so to feel useful, my family has already organized and completed bone marrow drives in Ohio and North Carolina. We have all been tested and put in the national donor registry, along with donating blood and platelets. We have had many friends and strangers participate with us and who have been offering support throughout this difficult time. I am truly grateful, we will need the support to make it through this. Forgive me if I got carried away, I have been staying 24-7 with my daughter at the hospital and am a beginner on the computer. I am not sure I was to write all this here, but thank you for giving me somewhere where the people really seem to care!