pastorjfreeman

Awesome turnout this morning for the Journey for Trey! Blessed is an understatement. Thanks to all who came out and a special thank you to Maddyx, Trey’s Kindergarten friend, for having this idea!!! THANK YOU TO EVERYONE!

Here is a picture of Trey today! This is about a 9 hour process…he truly is a champ! So far so good. Again, we won’t know if this works for about 2 weeks! Keep praying.

I met with one of our doctors this morning and we are moving forward with the photopheresis. He feels this is the best chance we have at getting the remaining part of Trey’s disease under control. As he said, “You can’t go on cruise control with this kind of a disease. You have to stay aggressive.” So…we are hoping the photopheresis will help take care of the rest of the abnormal cells that are in the skin. Trey is having intermittent fevers again and we have to assume it’s the abnormal cells…and we need to go after them.

Please pray that this process will work. Before we move to transplant, we need to get as much of the LGL disease under control as possible. Please ask of the Lord to help with this. If we can get the skin cleared up, we will be “all systems go” for the next transplant. We are asking God to use the photopheresis to finish off these bad cells.

We will do photopheresis today and tomorrow, and then again next Thursday and Friday. We hope to see some signs that it is working in two weeks. Please pray Trey handles it well and that there are little to no side effects. It is supposed to be a relatively easy process. They will basically take blood from Trey’s central line, put it through a machine, sort out what they need, treat those specific cells, and put them back into his body. It will take anywhere from 1.5-3 hours. It’s supposed to be a painless process for Trey…please pray it is.

Oh Lord…help us and heal Trey! We trust in You!

Trey likes to keep life interesting! He began running a fever about 1am last night and then again around 7am this morning. He currently, as of 12:45pm, has a fever right now. He is also, once again, having some slight blood pressure issues. Trey is very suppressed right now and highly susceptible to sickness, so…he’s either picked something up or is having delayed reactions to the Campath. Either way, things are under control for the time being though. He’s on meds for infection and other stuff to help if it’s the Campath. He’s not in a dangerous situation by any means at the moment, we are just watching him closely.

Our doctors do want to hold off on Campath for a few days and see how Trey does, but we don’t want to hold off too long and give the abnormal cells any room to start causing problems again. Trey’s liver and spleen are looking good, and his platelets are holding their own…so we need to stay on top of all that.

We are going to begin using something called photopheresis. Even though this has been around for a while, there is a new and advanced machine being used to help provide better performance. Our hospital is one of like 20-30 hospitals in the US that have this new machine. Basically, by using photopheresis, some of Trey’s blood will be taken from his central line, put through this advanced machine, treated, and put back in his body. The purpose of using this is to hopefully help with Trey’s skin condition. They hope that by treating the blood, it will help aid the healing process in his skin. We will see. Please be praying about this. As with anything, there are some small side effects, but nothing too serious. Just pray it helps.

That’s all for now. Things to pray for are:
1. Trey’s fevers to go away;
2. Trey’s blood pressure to stay up; and
3. His skin to heal and that the photopheresis would help!

Thanks everyone!

“O Lord, in the morning you hear my voice… (Psalms 5:3a).”

Trey had Campath last night and did very well. He woke up early, but feeling good. He had a good breakfast and is in good spirits. His skin continues to struggle, but I honestly think it looks a little better today. Trey and I are praying and asking God to heal his skin. The doctor will be by later. They are trying to decide whether or not to use a process called photopheresis. Please pray for wisdom about this. We don’t want Trey to have to endure anything that will not be beneficial to him. So please keep praying about all this with us.

Today should be an easy day for Trey since it is a rest day from Campath. So…I’m hoping to get some sermon prep done and spend some time with my boy. Hope everyone has a great day! The Lord has great plans for His children…walk with and trust in Him!