Overview

This site was created when Rosa got a rare form of leukemiae, JMML. Below you will find a short summery of our story. More news you can find in latest news or journal. A summery of her treatment you will find here. More questions? Please mail!

Name: Rosa Francina Johanna Vlug Age: 3 years old Date of Birth: October 6th, 2001 Main Diagnosis: JMML Mom: Nelleke Guequierre Dad: Albert Vlug Siblings: Hendrik (1,5 years) and ??

Rosa is our eldest daughter. She was never ill until she was one year and 3 months. She had a strange sort of flu, no fever, but sleeping all day. The p.a. told us it was a strange flu and ‘we could sort it out in hospital or try an antibiotic’. We did the last thing and she recovered quickly.

Three months later, just before a holiday, I felt a strange long bump in her lower belly. We did not feel to well about it and went for a visit at our p.a. He did not trust it either and send us straight away to hospital. The echo showed that the bump was a very enlarged spleen (three times as big as usual). We went home and in the evening the doctor called us that Rosa had a sort of leukaemia and that we had to a childrens hospital nearby next day. Because of the salmon coloured spots on the skin and her young age the doctor immediately thought of JMML. One day you have a healthy child, the other day it has a serious live threatening disease and we were going for a bone marrow transplant…

I was 7 months pregnant at this time and our new born son Hendrik turned out to be a perfect match for his sister. In July we started the transplantation. Her spleen was not removed, no total body radiation was done and the chemo’s used were busulfex, cyclofosfamide and melphalan. She did very well during the transplant. One of the doctors told us that he knew she had all these terrible chemo’s but could only see it because of her hair falling out. In nine weeks she was only three days really ill and not playing.

Very quickly after transplant her own blood returned within 3 months. We were told that there was no treatment anymore for Rosa because her blood returned so quickly. We tried a Donor Lymphocyte Injection twice to raise donor percentage but that did not work. After that she had to take 6MP (a light chemo) everyday to control the disease. Now she is 3 years old and we are one year and 5 months after transplantation day and she still shows no sign of leukaemia. Her blood counts are perfectly normal but her donor percentage went further down to 40 percent. We decided together with her doctors not to do a second bone marrow transplant until we are sure that leukaemia has returned. And we hope of course that that may never be the case… We are now (since Jan 17th 05) giving Rosa Accutane 60 mg/day. The percentage donor blood might go up by giving this medication.

Rosa is doing very fine. She is growing and enjoying life. She recently went to a preschool and enjoys playing with the other kids and singing songs. We are expecting our new baby very soon (7 January 2005) and Rosa is looking forward to it. So we thank our Lord that Rosa has been a true miracle until now!