Team Eliana Rose

In March 2015, we thought that we were treating an umbilical infection. The infection wasn’t healing. The antibiotics weren’t helping and the infection grew in size every day. Eliana was scheduled to see a pediatric specialist in Phoenix, AZ the following Tuesday. Friday evening Eliana’s pediatrician decided to act quickly because something wasn’t right. He had her airlifted from Yuma to Phoenix Children’s Hospital that evening.

The first blood test showed she had ZERO Neutrophils. Just in case there was a lab error, they ran another one. The second and third tests came back the same. The next morning, 3 doctors walked in fully covered with masks. They told us that more tests would need to be done and that a team of hematologists and immunologists are coming together to try and figure out her diagnosis.

The head immunologist and hematologists came in and told us they would need to do a bone marrow biopsy to see what was going on with her production of white blood cells. I watched helplessly while my 3 month old daughter was poked with needles and 3 failed IVs. They put a PICC line in which was cath to a main artery near her heart. She was sedated and they started the procedure as we waited anxiously.

They discovered that there was an arrest in the maturation of her Neutrophils. She has a rare case of Kostmann’s Syndrome. 14 Doctors came in to see her and learn what they could. They said she was an interesting case, that they were learning something completely new to them. The hematologist decided that she was to be put on daily injections of Nuepegen for the rest of her life which is her only line of defense to fighting infections. The injections leave her body achy. IF she in fact got an infection, she would have to be seen IMMEDIATELY because the infection could kill her. I was given both doctors cell phone numbers in the chance of that happening.

After almost a week in the hospital, the hematologist told us there was a cure! The cure is a bone marrow transplant.Eliana will have to undergo 6-7 days of chemotherapy to erase her immune system in order to recognize the donor's bone marrow as her own. She will spend 2 months in the hospital and 3-6 months near the hospital to monitor her healing. Eliana’s fight has just begun. She will need bi weekly blood draws to keep on eye on her levels. Please help us raise awareness for this syndrome in the hopes that everyone will register with be the match.http://de.gofund.me/TeamElianaRose I don’t think we have cried so hard in our lives. All we can do now is pray that God shows his healing power and comforts Eliana in this painful process."