My 18 year old daughter Elizabeth McGranahan is currently (May 2010) at the Universtiy of Minnesota receiving a cord blood transplant under the guidance of Dr. Jakub Tolar.
Elizabeth was first diagnosed with Aplastice Anemia in Jan of 2005. She completed a round of ATG therapy in the summer of 2005. After that her blood counts remained low, but other than bruising she was not having too many complications from her bone marrow failure. In the fall of 2007 her condition began to worsen. She was needing more frequent transfusions, her energy level was very low and she was missing a lot of school from the various illnesses she would pick up.
We began consutling with the Bone Marrow Transplant team at Children's Mercy Hosptial in Dec of 2007. In Jan of 2008 testing was done on her telomere length as a part of her pre-transplant screening. While we were waiting for the test results, her condition rapidly declined. She had about two months of non-stop menstural bleeding that kept her in and out of the hospital. During this time her test results came back showing that she had the shortened telomeres that are characterisitc with DC. Her doctor consulted with Dr. Neelam Giri at the NIH. Although Elizabeth did not have any of the clinical presentations of DC, they tentativley labeled her "DC-like" and suggested a course of Anadrol.
While Elizabeth was beginning her Anadrol therapy, we had her younger brother Jameson's telomere's tested. Jameson was a perfect HLA match for his sister, and the thought had been he would be her bone marrow donor if we had to move to transplant. Unfortunately, his test results showed that his telomere length is even shorter than Elizabeth's and he was no longer a donor candidate. Jameson is currently a healthy 13 year old and is not showing any sympotms related to DC.
Elizabeth completed her Andrgoen therapy without showing any promising results. We traveled to the NIH in July of 2009 to participate in the inherited bone marrow failure study. It was suggested at that time Elizabeth proceed to transplant.
We first met with Dr. Tolar at the University of MN in August. Elizabeth's hope was to complete the first semester of her senior year of high school and begin transplant in Jan. Dr. Tolar felt that would be okay since Elizabeth was showing signs of iron overload from her frequent red cell transfusions. Delaying transplant would give her more time for iron chelation and would hopefully get the iron overload under control.
As the semester progressed, Elizabeth found that her body would just not keep up with her mind and her desire to delay transplant. We traveled to MN to begin the transplant process in late Nov. During work-up week the results of her ferriscan came back showing severe iron overlaod. Dr. Tolar did not feel comfortable proceeding with transplant at that time and suggested that Elizabeth return home and continue with iron chelation, but to increase the chelation to 24 hours per day. His hope was that within a year her iron level would be low enough to proceed with transplant. We made tentative plans to re-check the ferriscan in 6 mo.
The 24 hour chelation was very hard on Elizabeth and it made her very sick. But we saw quick and steady results, so she chose to stay the course and fight through the sickness. By the end of March her ferritin levels had improved so much that a second ferriscan was scheduled. She was then cleared to proceed with tranasplant and we returned to Minneapolis on April 18. She received two cord blood units for transplant on May 11 and is currently in the hospital waiting for engraftment.
Elizabeth is blooging through her experience. Her blog can be found at: http://elizabethsmiles.blogspot.com/
I am also updating a page for her on caring bridge at: http://www.caringbridge.org/visit/elizabethmcgranahan
Either of us would be happy to share experiences with any other family who is facing this same battle.
Marsha Gribble
marigoldsue@yahoo.com
