pastorjfreeman

Update from Emily:

Jesus Christ is the SAME yesterday, today, and forever!!!! He is in control when we get good news, and he is in control when the news is not so good. Today the flow test revealed that The bad cells have gone up to about 20%. ( they were previously 0.01%). This is not what we hoped to hear.

Our doctors are also leaning once again toward removing Trey’s spleen, and are consulting with the surgeon to see if it can be done laparoscopically.
Today from 2:00 to 6:00 trey will receive the new drug Romidepsin. Please join us in praying that this drug is the answer… That it will not only go after the skin, but also everywhere else in treys body that is affected!!!
We do know WHO goes before us, and He continues to renew us each day. Thank you for your love and prayers!!

The doctors have decided to stop Campath and try a new drug called Romidepsin. This drug is a relatively new drug, but has recently been successful in treating relapsed cutaneous T-cell Lymphoma. It should target the skin more and hopefully keep the abnormal cells controlled in the blood. Trey’s ultrasound showed a little more enlargement of the spleen (14.7 to 15.6cm), which might be to blame for his tummy trouble. We are waiting on the results from the flow cytometry test to tell us if the cells are growing in the blood too. We pray not.

Trey’s new treatment will begin tomorrow. One of our biggest prayers has always been wisdom and new insights for our doctors. This new drug looks promising, and we are hopeful it will work. Trey’s transplant is still tentatively set for July, depending on his skin of course. Please pray that God uses this new drug to work wonders in Trey’s body…with no side effects. Thank you!

“I bless the Lord who gives me counsel; in the night also my heart instructs me. I have set the Lord always before me; because he is at my right hand, I shall not be shaken (Psalms 16:7-8).”

I am clinging to those verses right now. As most of you know, Emily and I have been home together for the weekend to be here for Ben and Jeannie and Toby’s funeral. Emily is heading back to Dallas tomorrow…actually today since it’s after midnight (Monday).

I’m anxious for Emily to get back to be with Trey. He continues to have fevers and tummy pain again. His skin is also worse than ever. The fever and tummy pain are most likely just related to the abnormal cells since his blood cultures continue to grow out negative. I’m really praying for the Lord to help Trey more than He already is. Please join me in praying for God to do “exceedingly abundantly” MORE than all we could every think or ask. Please pray his skin condition could be resolved and that the fevers and tummy pain would go away so we can move to the next phase of treatment for him. Please pray God lays His hand on Trey’s body tonight.

We trust the Lord, but are asking Him to do the miraculous in Trey. I just want him back home and our family back together…but as I preached this morning, God’s ways are greater and what He does, He does for His glory. So, in all things, we trust the Lord and pray He gets great glory from Trey’s life.

Heavenly Father,
You are good and what You do is good. We know that You can do far more than we could think, ask or imagine, and we ask You to do that in Trey’s life today. Do the miraculous! Heal the skin!!! Destroy the cells!!! Bring life back to my son!!! Make him whole!!! We love You Lord and trust You…but You tell us to ask of You in faith…so that’s what we are doing! We ask because You are the only One who can do what’s needed in Trey! We need You and we ask You to act mightily on Trey’s behalf. We love You Jesus and it’s in Your mighty name we pray these things,

Amen!

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!

It has been a while since I posted…which is a good thing because there has not been much to update. However, we have one big prayer need right now for Trey.

Trey skin condition is a problem. I don’t like to use the word rash any more, because it doesn’t aptly describe his problem. It’s much more serious than a rash…it is basically an infiltration of the lukemia cells in his skin…and it’s all over his body. There are days his skin looks better and days it is worse, and for whatever reason, the Campath is not destroying these bad cells that are in the skin. I can tell our doctors are concerned about it and are beginning to talk about more aggressive treatment options. We don’t want Trey to have to undergo more exploratory and perhaps unnecessary treatments…what we want is the “rash” to resolve itself.

So, what we are asking is for some very specific prayer for Trey’s skin problem:

1. Pray his skin just miraculously begins to clear up…Trey and I prayed about this today! Join us in this prayer please;
2. Pray the doctors have tremendous wisdom about treatment. Pray God opens their eyes to something they have not seen and that the treatment they offer will work!

Trey’s skin condition is setting us back. We need it resolved quickly. I am praying and believing that God is going to handle this for Trey, just like He’s handled everything else. Our God is able and we believe!!!

Also, here is a brief update on Toby. According to Ben and Jeannie, the doctors want to watch Toby a few more days before they do the lung biopsy. Toby has had some very moderate improvement in his lungs and the docs just want to give the lungs a few more days. Please pray his lungs continue to heal!

As always, keep praying…our God is in control! He is our refuge and strong tower!!! We trust Him!