Discharged

Colleen was discharged Sunday night. She is back on IV medications at home. I am comfortable with taking care of her at home, so even though she is still sick, she was allowed to be discharged (visiting nurses again). Thanks for your prayers.

Admission

Colleen was admitted to the hospital Wednesday. She has been running a low fever since Monday, along with pink eye. But her fever spiked 101 last night........so admission. She is otherwise doing well. Lack of apetite, but otherwise fine. Of course, zero temps here at the hospital. She belongs at home, but obviously, the doctors are overly cautious with her, as they should be. So some powerful antibiotics and hope to be home soon. There is the possibility that her port will be removed while she is here. So far it is not infected, but is always a possibe source of infection. Not sure if we want it removed yet, as she has a history of very poor IV access, so please be in prayer as we make important medical decisions for our daughter along with the doctors.

Colleen's second DNA test on her blood results were very encouraging. Beginning of December her test was 95% William's blood (5% margine of error). Her results from two weeks ago were:
"RESULTS:Both recipient and donor cells were detected by post-transplant analysis. Recipient cells are present at approximately <5% of all nucleated cells.
INTERPRETATION:Chimerism was detected. Correlation of results with clinical findings is recommended."
It looks like she may have kept a tiny bit of her own marrow, which is what CHIMERISM means. Her second test was higher for William than the first. She will repeat the test again around 6 months post transplant. As long as the "chimerism" remains stable (doesn't go the other way with lower percentage for William's marrow) then she is cured of sickle cell disease!
The BMT doesn't reverse any of her previous organ damage, or change her anatomy (ie: her tiny blood vessels), however, now she is making ROUND red blood cells. For her to spend the rest of her life symptom free is a miracle. That is our hope for our daughter. Thank you everyone for your prayers.
Today Colleen woke up with pink eye. Please pray that the medicine clears it quickly.

Lots of GOOD NEWS

Colleen had blood work yesterday at the pediatrician's office. Not only were all her numbers really great, but the BMT clinic reduced the dose of her Tacro drug again. The really SUPER GREAT NEWS is that her DNA blood test from last week showed "less than 5 %". As explained to me, there is a 5% margine of error. Her first DNA test from December was 95% William. This time she is greater than 95% William, so that means the test is even better this time. Aparently with a 5% margine of error, they couldn't get an exact number, so she is going in the right direction. The DNA test will be repeated again in a couple of months. We don't want the number to go down, that would be bad. Colleen is doing so well, praise God. Thank you for all of your prayers.

Tests

Colleen had clinic last Thursday. They repeated the DNA test and we are still waiting on the results. If it shows 95% or better for William's DNA, then that is great and she will probably keep his marrow for the rest of her life. However, if the percentage has dropped, not good. Please pray that God will grant her the cure and that she would not have to go through any more of the medical procedures to cure her. The other good news is that she now only has to go to clinic every other week. Yippee! The diarrhea continues, but she is back to early p0tty training. Also, the dose of the medication causing the unpleasantness has been reduced. Also, her weight was up again to over 29 pounds. She is back in the right direction.