pastorjfreeman

Well, Trey was able to be home for 3 nights…it was fantastic! He did really well. He got to see some friends, play with his siblings, see two movies, see some fireworks, and just relax. I was so happy for him. I love to just watch him being a kid. I have almost forgotten what that is like for him, but to see joy on his face…it really is priceless.

We left early for the hospital this morning and got here around 10am. Once we got here, it was a whirlwind. He had to go to his regular doctor’s office first, then be admitted to his regular room, and then get ready for the photopheresis treatment (which is an extensive process). I did bring Clayton, one of his older brothers back with us, which gives him someone to play with. Trey will like that.

Any way, I’m not sure what the new normal will look like for Trey, or when the next transplant will be. His skin is a little better, but no where near being cleared up yet. We REALLY need some drastic improvement with his skin situation. His platelets also continue to struggle. When he gets a platelet transfusion, they shoot up significantly, but after a few days, they go back down. We need his platelets to stabilize on their own. Please pray about that. We are just waiting for Trey’s skin situation to stabilize, and the percentage of abnormal cells to go back down, so we can move to the next transplant. We, of course, are assuming those things WILL happen and are asking/trusting the Lord to help.

So, if we could ask you to pray for anything, it would be three things:
1. The percentage of abnormal cells to go lower;
2. For his platelets to stabilize and keep producing on their own; and
3. For his skin condition to continue to heal!

Thanks for praying with us. We love you.

As you know, things are always changing quickly with Trey and this weekend was no exception. On Saturday, I just mentioned to the doctor that it would be nice to give Trey a little hospital break at some point. We, of course, only wanted to do it if Trey was healthy enough and would not be jeopardized any further. The doctor said it was a good possibility because Trey’s numbers have been holding steady.

The next morning, our doctor came in and told Emily that he though Trey could go home and stay home until Wednesday. Well, I was back in Newcastle handling my Sunday responsibilities, so our friend, Shawna, just dropped everything and left for Dallas immediately to pick them up. We are so blessed to have friends like this. Trey was discharged around 4pm and home by about 7:30pm last night…and for the first time in many months, we were all under one roof again. Just plain awesome!

We are praying for a good three days for Trey. We just want him to relax and have fun. I sat next to my wife in our living room last night and just smiled watching Trey enjoying being home. Truly…there is no greater feeling! We praise the Lord for this extra measure of God’s grace!

Things happened so fast yesterday and I was so busy with all my Sunday stuff that I just didn’t have time to post anything. Any way, please pray that Trey can heal even more at home these few days, have no surprises, and shock the doctors with how well he looks when he goes back on Monday! Oh Lord, may it be!

Love everyone and thanks for praying!

“God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is his megaphone to rouse a deaf world.” -C.S. Lewis

Thankful today for God’s presence in our lives! I am resting in the reality that I do not have to understand why things happen…there doesn’t even have to be a silver lining…but rather, and most importantly, God is with us, IN us, and for us! His presence is all we need and because of that, we can endure and will overcome!

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.