I wanted to let you know what we found out from the doctor thus far. She called yesterday to let us know that she received all the results from the newborn screen and that Adrianne's CAH levels were slightly elevated. She said we would do follow up blood work which we did yesterday afternoon. After three sticks in the doctors office we were sent to the hospital lab for a fourth stick. Please pray they got enough blood to complete the test. I don't want to have to take her back in and repeat the process. As hard as the afternoon was for me and my mom, Adrianne was a trooper. A couple of test that they are doing will be ready by today and one test has to be sent off so we won't have results until next week. Please pray that it was a false positive and that we will be done with this.
At our clinic appointment on Wednesday, we got the road map(calendar) for James' next phase. As Greg posted earlier we were a little disappointed because we thought we were going into maintenance but the phase is actually called interim maintenance. This phase consists of the 6MP which he has been taking and will continue to take for three years every night. Praise God James has finally started taking this well. He opens his mouth and lets me squirt it in and then I give him water. Keep praying for this to continue and that he would take his Bactrim that good.
He will also be giving burst of steroids during this phase. We will start next Wednesday and he will take them for 5 days and then take them again for 5 days in the middle of the phase. We will also be giving him another oral med once a week called methotrexate(which is the same med he gets when he has an LP). he will not have to have an LP until day 29 of this phase so we have a little break from those. James will also get vincristine through an IV a couple of times during this phase. This phase last 57 days and then we will enter into another phase called delayed intensification.
Delayed intensification will last about 60 days and James will be introduced to new meds and higher doses of chemo. They fully expect his counts to bottom out during this phase. This will happen over the Thanksgiving and Christmas holidays so we were very disappointed we can't travel this year but like Greg said James health is the utmost importance. I will have more specifics on this phase when we get close to completion of interim maintenance.
1. The tests for Adrianne will come back normal.
2. Adrianne will begin to sleep better at night instead of during the day.
3. James will continue to do well with treatment and taking his meds at night.
4. For Greg and I-these last couple of days have been very stressful-pray that we continue to have time for one another in the midst of taking care of our kids.
5. Pray for a better established routine for James and Adrianne because Nana leaves in a couple of weeks.
Again we appreciate your love and support during this difficult season of our life.