pastorjfreeman

We are still so very thankful that the flow cytometry revealed no increase of the abnormal cells this week…that, however, does not mean we are finished with this battle. Trey still has a long way to go.

We are currently attempting to do what we have done all along, which is get the abnormal cells in the blood under control, along with the getting the abnormal cells in Trey’s skin toned down too. As you have heard me say, this has been very difficult. You often feel like you are “robbing Peter to pay Paul” in this situation. One drug works for one thing, but hurts another and vice versa. It truly is a very frustrating situation at times.

We cannot go to transplant with the abnormal cells being as numerous as they are. Even though they are only at 20%, subjecting Trey to a rigorous chemotherapy regimen would only give these abnormal cells more room to cause major problems. So…we must get them under control. This means we are forced to make decisions about drugs, others treatments, radiation, etc…and with each choice comes various consequences.

Please pray for significant wisdom for us and our doctors. At this point, Emily and I are not wanting to give Trey Campath just yet…we feel it is hard on his body, negatively affects his skin, and also kills the good t-cells in his body. It does target the abnormal cells and handles them quite well, but it affects other positive things as well. Also, the romidepsin Trey has been getting seems to help, but hurts as well. He has been extremely nauseated since beginning that drug. It is hard for him to keep any food down. We are trying to use various anti-nausea meds to help, but he is still struggling. Please pray this resolves itself. We’d like to continue the romidepsin, but don’t want Trey feeling so poorly.

We are also trying to decide about the photopheresis. This treatment seems to be helping his skin, but it causes Trey’s skin to be dry and peel significantly. It has also causes some areas to get so irritated that sores have opened up that have gotten infected. So, again…there is good, but also bad with that.

As you can see…we just need wisdom and your prayers would be greatly appreciated. We are targeting the beginning of August for the next transplant now…as long as we can get the abnormal cells under control. I, of course, am praying for the miraculous and still believe that Trey’s body can heal itself. I’m praying than the good cells he does have will control the bad cells that remain. I’m hoping that with the removal of the spleen, the good cells he received during his transplant in December will just miraculously rise up and do what no medicine can. Would this shock our doctors? YES!!! Would I love to see them shocked? YES!!!

Please keep praying for Trey! We got a major victory this week and we just need a few more so we can get our son home. We totally trust the Lord though, and whatever happens, we know is His perfect plan for Trey.

Thanks for praying so hard with and for us. We love you.

Well, Emily just called and said that the doctor just got the flow cytometry report back and the percentage of abnormal cells is exactly the same as it was when they took it last time…20%!!!
PRAISE THE LORD!!!!!!

As you know, our prayer was for the abnormal cells to be at 20% or less…so this is a huge victory! Emily said she could tell that our doctor was very surprised. When he made rounds this morning, he told her he expected the percentage to be high…so, he was very surprised when he got the results back today. We give God ALL the glory for this and thank you more than we can say for your prayers…DON’T STOP!

So…what this means is that the abnormal cells are being “steadily” controlled and not out of control like our doctors were assuming. Since Trey was having so many lymphocytes showing up in his blood lately, our doctors were assuming the majority were abnormal cells…what all this tells us is that there are some good t-cells in his blood, that are apparently functioning well! Our doctors will stay the course they are on, but also may decide to begin using Campath again. Our biggest prayer right now is for WISDOM for our doctors. Please pray they will be filled with wisdom and insight from the Lord!

Right now, we are just breathing deeply and thanking the Lord for this victory. Blessed be the name of the Lord…praise HIS holy name!!!

We are still waiting for the results of the flow cytometry report. Usually when I am awaiting results, I tend to be a little anxious. Today, I am peaceful. I feel the Lord is giving what is needed…which is a peace that surpasses understanding.

At some point today, we will either be celebrating good news, or figuring out what to do next if the news is not so great…only the Lord knows though. BUT, in and through all things, we will hold onto the Lord and remain faithful to Him! He is our ROCK, our STRONGHOLD, our DELIVERER!!!

As we wait, I am ever mindful of some the lyrics to one of my favorite songs of all time, In Christ Alone:

“In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm;
What heights of love, what depths of peace, when fears are stilled, when strivings cease; My Comforter, my All in All, here in the love of Christ I stand.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life’s first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I’ll stand.”

Today…we stand in the love and power of Christ! Lord, we love and trust You!

Although we won’t know the results until Tuesday or Wednesday, they are drawing Trey’s blood today for the ever important flow cytometry report. As I’ve said, this is the most important blood draw of Trey’s little life. As you think about it today, just please pray throughout the day. We will post the results as soon as we know something.

Heavenly Father,
You known our heart. You know we trust You. But today, we ask for special grace. We ask for an underserved blessing. We ask that You would do the miraculous in Trey and lay Your strong and mighty healing hand upon him. Reach out and bring life…reach out and destroy the disease in my son. We humbly ask You to do what only You can do and wash over Trey in a powerful and awesome and holy way. We ask You for healing, but will trust You with the results. You are good and we have all our hope in You. We love You Lord!

In Jesus’ mighty name,
Amen

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!

Trey is out of surgery and doing fine. He’s asleep right now. He will have to have another surgery on Monday to put the new line in…but for now, he’s got nothing coming out of his chest. I know that’s a nice break for him.

Please pray his infection heals up nicely over the next few days and pray his skin continues to heal. My other children left for San Antonio today to be with my parents…so, I’m praying they have a great time too. I need a few days in Newcastle to get things done. I plan to go in early each day and stay late trying to catch up a little this week.

Thanks for the continued prayers in this marathon we are running. Thanks for holding our arms up with your prayers. We love you.

Trey is having a small surgery today. He had a double lumen broviac (central line) placed in his chest back in November. This is the way Trey gets meds, draws labs, gets treatments, etc. His current line has done a great job, but is wearing out, plus he continues to get small infections in this line. It is also a little small for photopheresis, and causes problems when he receives that kind of treatment. So…we are taking his current line out today, putting in a temporary pic line, and then on Monday, he will receive a bigger and better central line. Waiting until Monday to put the new line will also give Trey time to heal from the infection he has with his current line.

This is a relatively simple procedure, but we would still appreciate your prayers. His surgery is around 11 and shouldn’t take more than an hour or so. Also, keep praying his skin heals. It looks a touch better each day, but still has a long way to go. Thanks for praying for us. I’ll update again tonight.

I know it’s been a little while since we updated on Trey, but there hasn’t been much to update…which is a good thing. Emily has been with him for the past few days and says he continues to steadily improve. He currently is healing up from the surgery nicely; is requiring less and less pain medication; is having no fevers currently; his skin is also improving slowly; his appetite is increasing a little; and his overall blood counts continue to look pretty good.

Trey received the romidepsin medicine again last Sunday and will resume with the photopheresis treatment tomorrow and Friday. We are hoping the abnormal cells will stay suppressed and that his skin condition will continue to improve with the new drug and photopheresis treatment. Please keep praying about these things. We hope to move to the next transplant sometime this month.

Thank you for your continued prayers. We just cannot tell you how appreciative we are. Keep praying Trey all the way home…that day will come soon. I’ll update more when I am with Trey on Thursday.

We love you!

Jeremy and Emily