Clinic Day

Colleen went to clinic today. Her hemoglobin is still low at 8.3, but was 8.4 last week so she is holding steady and didn't get blood. She was given an injection of a medication that is supposed to boost red blood cells. She returns to clinic next week and she will be back on an IV infusion of Pantamadine. She had been on oral Bactrum, but that can cause the decreased red blood cells, so that is stopping to see if her hemoglobin goes up on the Pantamidine instead. Her DNA test will be repeated in two weeks and we hope to see 100% William. If it drops she may need more "William Marrow" from the freezer, and that would be WITHOUT immuno supression, increasing the risk of Graft vs Host disease significantly. Please pray that God would grant her a complete ingraftment of her brother's marrow. Her heart ultrasound Echo and EKG test results from last week were excellent. Her previously diagnosed atrial septal defect measured a tiny eight tenths of one millimeter. Very tiny. It appears to be smaller than it was years before. So her heart is excellent and did not have damage from the chemotherapy. Praise the Lord. Of course, daddy and I already knew Colleen has a good heart!

Clinic

Colleen had a great day at Clinic on Tuesday. First, her DNA blood test came back 95% William. With a 5% margin of error, that could be 100%. They will retest her in one month, and as long as the percentage doesn't drop, then it looks like a confirmed cure! She also escaped a test they do for cancer patients that sickle cell patients don't need, a bone marrow biopsy. Since she did not have cancer, there is no reason to check her marrow. So, one OUCHIE test averted! Also, her magnesium level on three times a day oral was EXCELLENT, so her port needle was removed and no more IVs at home. Yippee! She also doesn't need to go back until nine days, so they are pushing her appointments back to less than once per week. After next week, if all is well, she will probably only be in clinic once every two weeks. And in addition, her Tacro drug level was decreased. When she is off of the Tacro, then she can start going to the pediatrician for follow up. The estimate is two to three months. Her hair is growing back so well. She has baby fine hair all over her head, like a newborn. We will have to take a picture and post our no longer bald beauty. Thank you everyone for your prayers. Please continue to pray for Colleen to remain infection free, to keep William's bone marrow and not lose it, and pray for our entire family. Thank you.

Medicines

Colleen had TWO oral medicines discontinued. Also, last Thursday, dad tripped on her IV and she clotted off in her port before the visiting nurse could come. It was really a disguised blessing. She had to go to the hospital Friday morning to be reaccessed and get "eruokaniase" (sp?). Since she didn't get much of her IV magnesium Thursday night, they ran another blood test, and her level was fine. She was increased on her oral dose, we only had to give her the IV magnesium on Saturday, and tomorrow they will recheck her levels. If she is good for three days on the oral medicine alone, she will be done with the at home IVs!!! Please continue to keep Colleen and our family in your prayers.