For those who have been journeying with us, you will be familiar with the phrase “flow cytometry.” Trey has had several flow cytometry tests over the past 8 months. The flow cytometry test is the best way for us to see what kind of cells are in Trey’s blood stream.
As most of you know, the level of abnormal “bad” cells has been as high as 60% in Trey’s blood stream, but with the use of several different drugs and treatments since the transplant in December, the percentage of abnormal cells has been as low at 0.03%.
However, when the percentage got to 0.03 in the blood, that is when we started having problems with the bad cells infiltrating his skin. So, as we started treating the skin, this gave room for the bad cells to rise again in the blood. One drug would seem to help control the bad cells in the blood and other drugs somewhat help with the skin, but we cannot seem to control both the blood and skin at the same time. It truly has been a very frustrating journey. Just when we think we turn a corner, something else pops up.
When the last flow cytometry test was run a few weeks ago, the level of bad cells in Trey’s blood had risen back up to 20%. This, of course, was very concerning to our doctors and us. We had a long conversation with one of our doctors today. He is extremely anxious and interested to see what the flow cytometry test will reveal next week. If the percentage of bad cells is greater than 20%, our doctors will be very concerned about what step to take next. As our doctor said today, “We are running out of options.” Honestly, I am not sure what the next step will be if the level is above 20%. They may try Campath again, but as I mentioned above, Campath was one of those drugs helping the blood, but hurting the skin. I know our doctors do not want to do the next transplant with the percentage of abnormal cells that high in Trey, but we may be forced to proceed any way.
If the percentage is 20% or less, we will all feel a little more optimistic about moving forward with the current plan of treatment, as we keep working toward the next transplant. So…the flow cytometry test on Monday is the most important blood test we have run yet on Trey. We DESPERATELY need the flow cytometry to show less than 20% of bad cells in Trey’s blood. Our doctor did tell me today that he expects the percentage to be higher than 20%, but we know that he does not determine that…GOD DOES! God is in control of everything happening with Trey, so whatever the result is, we know is His will for Trey. We have given Trey totally to the Lord.
We do ask for your prayers though. We plan to run the test on Monday and hope to know the results by Wednesday. These are critical times for Trey and we covet your prayers. Please rally any prayer support you can for Monday’s test.
I am asking…begging God daily for healing and long to have Trey back home with us…living life. I would give anything to see Trey healed on this earth. I would lay down my own life in a heartbeat so Trey could take up his…but it’s out of my hands and totally in the Lord’s. Please join us in asking God for a special dispensation of His grace on Monday.
Our God is in control and He is holding Trey!
We are lifting Trey up in our prayers and asking that God’s perfect will be accomplished and that the outcome will result in a perfect healing of body and heart. Praying for you and Emily that you will rest completely in the knowledge that our God has heard your cries and felt your tears as you wept in His arms. As we have learned, sometimes God uses our loved ones to reach and minister in the most difficult of places to touch others with their precious heart and Spirit living within them. Places and people are reached because of a divine appointment that could only be orchestrated by our God. My heart aches for you both and I know how weary you are. You’re both so courageous and are doing a fantastic work.
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
We love you.