Medical Update: Back in April of this year toward the beginning of our journey we were told that Juliette had a abnormality in both: Chromosome 7 or Monosomy 7 ( This puts her at risk of Leukemia ) & Chromosome 8 or Trisomy 8. As of this moment she test negative for both abnormalities. In addition the blood work shows no MDS. Please remember that there are very few cells right now at all. I am encouraged and hopeful but I am also cautiously optimistic. She still has a empty Bone Marrow / Bone Marrow Failure. The few donors cells left our fighting for survival. But unfortunately these cells continue to loose this battle. I have no new information in regards to the 2 donors and 1 chord that were sent off for Confirmatory Typing. Still waiting. Juliette continues to receive Neupogen daily. Neupogen (filgrastim) is used to treat neutropenia, a lack of certain white blood cells caused by cancer or a bone marrow transplant. However, her counts continue to remain low. Bordering extremely low. I asked the doctor this question as a statement and she agreed. One might say that without the Neupogen Juliettes counts would be absolute zero. Juliette has received platelet transfusions every night for the last 4 nights in a row. This is a new development. She was already receiving a lot of blood transfusions for white, red, and platelets. But not every night. Maybe every other or every 3rd day. She will receive another transfusion this evening. That makes 5 in a row. The nurses will draw blood and test 15 minutes after the transfusion to check the levels. If the levels are already low this would mean that Juliette has developed an antibody that is attacking. Then the doctors can simply talk with the blood bank and obtain a different type of blood without that specific Antigen. If the levels are not immediately low after the transfusion then it would mean that her body is using these platelets at a rapid level and needs to be replenished everyday. If that is the result the doctors will literally be at a loss. I think I am the most frustrated at the moment because my 11 year old daughter is trapped here in the hospital. Before all of these hard decisons were made / to have the transplant or not / Intense Chemo vs. Reduced Chemo / Chord vs. Donor / And so many more tough potential life altering / ending decisions ....... Juliette was playing softball, basketball, girl scouts, thriving both in school and socially, just enjoying being an 11 year old girl. My beautiful 11 year old angel. My Ryan Juliette Lyng. Now she is unable to survive out side of this hospital for the foreseeable future. Her brothers miss having their trickster, funny, entertaining, sassy little sister at home. We all do. And all Juliette wants to do is just go home. When I convinced the doctors to let her off her pole to go trick or treating on Halloween, you know what she said. When we got back to the room and it was just us and she was still free of her pole she said, Dad lets make a break for it and go home. I know we will have to come back. But just one night. I want to go home. When Juliette learned that she would need another transplant she cried hysterically and said I just want to go home.
Posted on: Fri, 07 Nov 2014 23:07:52 +0000
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