Choices and Decisions

Mireya's health has declined and due to the severe nature of her condition, it is imperative that we make a decision on the next steps for her care. We've been talking about the options of the Autoimmune Suppressive Therapy and the Bone Marrow Transplant at a high level for a few weeks, but finally had to sit down with our physician to really dig into the nuts and bolts of this procedure. There is so much involved and I tell you if we didn't have our faith, we'd probably be standing somewhere wasting time with our heads in the sand wishing it would all go away. Unfortunately we don't have time to waste. There are a lot of factors and variables to consider with both options. When they start talking about failure, death, extreme medications and side effects it becomes more than a simple choice. You begin to think about all the points in between.

Both options suppress the immune system, one will replace what is not working and the other 'could' help the body bounce back on it's own. The percentage of success is higher with the BMT, but the suppressive therapy is a lower risk option. AST takes months to determine if it is working. During the course of AST there is the potential for additional transfusions, which can complicate having a transplant following AST. I keep telling myself breath, pray and know that everything is going to be ok, even with all the risks associated with all of this.

The BMT has a high success rate, but is also high risk. There is a possibility of the body rejecting the transplant even in a sibling match. Insurance requires an extensive workup of tests and evaluations on both Jalen and Mireya before the BMT will be scheduled. The approval is usually quick, so it could be as early as a week from today that we begin the whole process. The initial recovery period is anywhere from 5-8 weeks in the hospital following the transplant. During that time we would visit the clinic several times a week to monitor and track progress. Mireya will also have to take medications over the course of a year to support her system. These medications will slowly be tapered off in intervals as her health improves. We learned throughout the course of her recovery and monitoring, Mireya would be unable to go to school. We were looking forward to her going to the Pre-K program this year at St. Lukes, but we'll have to figure something else out.

Quentin and I have been very prayerful over this decision. Half the battle is finding a donor match. What a miracle and blessing to have our son be the match. That is huge. Mireya is so young and overall we want the best option for a total cure, long term survival and one without a life long dependency on medication. We know that God is in control and is concerned about everything that burdens us. We continue to trust him, despite our worries or fears. I refuse to believe the Lord has brought us this far and given us the favor he has for failure.

A friend messaged me this week and told me to 'Take Heed, God has chosen to have you and Quentin sit at his feet and commune with him like never before' that resonated with me because we definitely are learning to trust God in a greater way. He is our peace, he gives us comfort, and we believe he has already provided everything we stand in need of. Please continue to pray with and for us. This is not easy, but we trust that it is right.