Trey handled his treatment well yesterday. It’s only a once a week treatment, so he will get it again next week. He is getting his photopheresis treatment today and tomorrow as well.
I will say, things continue to be very complicated for Trey. With the level of abnormal cells growing and the size of Trey’s spleen enlarging, I feel we are getting to a place where we will need to make some decisions. One decision will be whether or not to take Trey’s spleen out. Our doctors feel this may be a good thing if it can be done laparoscopically. They do not want to put Trey at risk through a more invasive surgery, so if the spleen can be removed safely, I think we will move that direction as early as next week.
Another big decision will be when to move to transplant. Our doctors do not want to move to the next transplant with this much disease still in Trey’s body and skin. While we had the abnormal cells controlled in the blood, we could not control them in the skin…which is why we were forced to try something besides the Campath.
Now, we watch and see if this new drug will work. If it does not, I really have no idea what they will do next. We NEED, more than we can say, for this drug to have some very positive effect on Trey. I will admit, this is hard. It is hard for everything to be completely out of your hands, and although I know the Lord is holding Trey, I struggle to rest in that reality sometimes. God is good though and is patient with us…and HE IS IN CONTROL! We know that to be true without a doubt!
I read Psalm 20 this morning and it was very uplifting. Here are a few verses I am praying. Join me please in asking the Lord to do exceedingly, abundantly than all we could ask or imagine:
“May the Lord answer you in the day of trouble! May the name of the God of Jacob protect you! May he grant you your heart’s desire and fulfill all your plans…may the Lord fulfill all your petitions! Some trust in chariots and some in horses, but we trust in the name of the Lord our God (Psalms 20:1, 4, 5, 7).”
pastorjfreeman 