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The Beginning We have a long road to travel and the journey is just beginning. This web site is dedicated to helping everyone learn more about what a special girl Kacie is and to educate everyone about the disease that she is fighting.
May 31, 2001 - Original Diagnosis On April 21, 2001 Kacie was scheduled for a 7-year-old well checkup. That day was the beginning of a nightmare. Kacie's blood counts; red blood cells, white blood cells, and platelets, were all very low. She was sent to Children's Hospital of the King's Daughters for further testing, which included a bone marrow aspiration. The diagnosis confirmed that Kacie has Fanconi Anemia (FA). Fanconi Anemia is a very rare disease that is primarily considered a blood disease, but it may also affect all systems of the body. Fanconi Anemia is an inherited anemia that may lead to bone marrow failure, known as Aplastic Anemia. The series of tests also confirmed that Kacie has Aplastic Anemia and will need a bone marrow transplant. We leave June 2 to go to the NY Presbyterian Hospital for a week of tests and meetings with specialists.  June 5, 2001 Trip to New York City
 Kacie participated in an extensive research project conducted at New York Presbyterian Hospital. She was case number 76 by this particular research team on Fanconi Anemia. She was examined and tested by several specialists. We learned a lot by participating in this program. Thanks to everyone who has helped in the support of research projects of this magnitude. This research has helped increase the success rates of helping patients who are dealing with the major problems associated with Fanconi Anemia. Check out all the pictures where Kacie was having tests performed.
We met with Dr. Wagner on June 18, 2001 for a bone marrow consultation. Since Fanconi Anemia is a rare illness, there is not a lot of data to determine when would be the best time for transplant. According to Dr. Wagner, the success rate for bone marrow transplant on a Fanconi patient is best prior to the patient developing leukemia or any other major illness. After consulting with Dr. Wagner, we agreed that the sooner we can get to transplant, the better.
We greatly appreciate the love and support from Jane & Ray Jack. They made us feel extremely welcome while in Minnesota. Not only did they take us around the town and to dinner, they also spent a memorable day with Kacie and us at the Mall of America.
Final blood tests are being done on bone marrow donors. Hopefully, we will have an answer soon!!!
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While in Minnesota, we visited the unit of the hospital where Kacie will be during transplant. She will be in an isolated room for approximately 4 to 6 weeks. Then she can move to the Ronald McDonald House and will be monitored for about 3 more months. Kacie really liked our visit to the Ronald McDonald House.
Erin's birthday is Sunday, July 22nd and Kacie's birthday is Monday, July 23rd. Plus I just had my birthday on July 18th! In case you hear all the birthday horns, it is only us… celebrating this weekend!