pastorjfreeman

Do me a favor friends, before you go to sleep, please say a prayer for Trey’s rash to improve. I’m hoping in the morning it will look better. Thanks everyone!

The doctor just came by and shared with a few important things with me:

1. He wants to continue on this strong cream to see if it works on Trey’s rash. He’s not sure it will, but is hopeful. If the rash does not show signs of improvement by Monday, they will have to put another central line in Trey and begin treating his blood directly. This rash is connected to the abnormal cells in his body and is a blood related skin problem. As a dermatologist friend put it, “It is a leukemic infiltrate – that is, the leukemic cells have infiltrated the skin and have presented small red spots, nodules, or purpuric/petechial nodules.” So…what we really need is for the Campath to begin attacking these cells. Now that there is 0.03% of abnormal cells in the blood, we are hoping the Campath will begin targeting these cells on the skin and controlling them too.

Please pray about this. The last thing Trey needs is another surgery having a second broviac central line placed. Please pray this rash shows incredible signs of improvement by Monday! The rash is also beginning to itch Trey now, so it’s more bothersome than it has been. He’s very annoyed by this. We appreciate your prayers.

2. Our doctor also told us that several potential matches have already popped up for Trey. The potential donors will have to be further tested of course, but Dr. Goldman now feels we will have no problem finding a perfect 10/10 match. PRAISE THE LORD!!!

All in all, Trey is doing well. We are stopping the nutrition in his line today…which means they feel he is eating enough to no longer need the TPN. We are grateful for this…it’s all progress and it’s good.

I am still praying that somehow the good cells that are in Trey’s body will miraculously recover and start growing. This would amaze our doctors. However, that might not be God’s plan for Trey…so whatever comes next, we rejoice and trust the Lord is holding and lifting His child.

We love you and so appreciate your daily prayers! Keep crying out!

I just got back to Dallas and Trey looks great. He’s eating again, laughing and just seems to feel better all the way around. Before I got here, his doctor called and told Emily that the percentage of abnormal cells has now gone from 3.5% to 0.03%! PRAISE THE LORD!!!! This continues to show that the Campath is working and we thank God for that. Trey’s tummy still looks good and as far as we know, his spleen has not grown any larger. We just thank God so much for all these things!

His main problem right now is his rash. It’s really bad. We are trying a strong cream that we hope will help. The biopsy revealed that the rash is consistent with the large granular lukemia, and the cream targets those cells specifically. So…it just goes to show that even though there is only 0.03% of the abnormal cells, they are still causing problems. These are very pesky and aggressive cells. Please pray this cream work miracles on the rash. If the rash continues to get worse, we will be forced to experiment with much more extreme treatments. We would love to avoid such measures. I would love it if Trey woke up tomorrow and the rash was totally gone. Please ask the Lord for this on Trey’s behalf.

As far as what’s next for Trey…we really don’t know. We are kind of in a “watch and wait” phase. If things keep improving, we will probably not have to take out his spleen. If things really keep improving, he may not need another transplant. However, our doctors feel that a third transplant is inevitable…it’s just a matter of when to do it. They are glad the abnormal cells are under control, but do not feel he will be able to grow good, healthy cells without another transplant. We will see!

We are praying for God’s will to be done in Trey’s life…and whatever happens, we will trust Him. If he needs another transplant, then so be it…if not, then so be it. Trey is totally in the Lord’s hands. We love you guys and really need and appreciate your prayers. Let pray that rash away! Join us…

Jeremy

Good morning! Let me quick you a couple of updates:

1. Trey continues to feel good. His numbers/blood counts are looking good as well. We are so grateful for all of that. His rash however is significantly worse. It seems to get worse after he receives Campath. His rash has spread and is very pronounced. We need answers for how to treat this. Our doctors have had a specialist look at it and they are formulating a plan…a plan that needs to be implemented ASAP! Please pray they can figure something out and begin some kind of treatment today. We are very grateful the rash does not hurt Trey. He starting to scratch it more and we can tell he is noticing it more as well…so we just need it resolved.

2. Here is an update from Ben and Jeannie about Toby:
The surgery getting Toby on the ECMO machine went smoothly. The ECMO basically serves as an artificial lung and does all the work for Toby, and right now, the ECMO is doing its job. We are just going to be waiting and praying that his body will heal from what was effectively respiratory failure. We are praying his lungs will heal and clear up now that they can rest. We still hope we can identify a cause so more specific treatment can be attempted.

As you can tell, we still have much going on and much that we need prayer for. Many days it feels like one step forward, ten steps back…but we are all trusting that the Lord is directing our steps whichever way they go. Thank you for your constant prayers. They are felt and so needed.

Jeremy

If you have a minute, listen to my sermon from Sunday. I would love your thoughts on it. It was titled: To Know Him and to Make Him Known! Here is the link:

http://www.fbcnewcastle.com/media.php?pageID=36&

The doctor just came by with good news for Trey. An ultrasound from this morning revealed that his spleen has gone down in size by 25%!!! This is huge. It was measuring 23, and is now measuring 16 (normal is 11-12). This is a huge praise for us and probably the reason Trey has not complained of tummy pain for many days! Based on this progress, we will continue with Campath this week. He will get the 5 mg dose today.

Our biggest hurdle before moving to another transplant is the skin. Trey’s rash is severe and is a form of the LGL. It does not appear to be better and seems to be a touch worse each day. Our doctors are consulting a special skin doctor, and considering a couple of possible treatments. Please pray with us that this rash resolves itself…an overnight miracle would be awesome! (Thankfully, the rash does not hurt or itch…just looks very scary and we need to stop it from spreading). Trey is also eating better, and has been fever-free for about a week now. We are enjoying these much needed good days, and praying they continue!!! We, of course, are trying to stay steady. We don’t like to get too high or too low based upon our circumstances, but are simply asking God for strength to endure and the ability to glorify Him in all things! Please pray with us for the rash to look better ASAP!!!

On a more somber note, please pray for our nephew Toby! His situation is touch and go right now. Even with the ventilator, his lungs are not responding as they should. The doctors are trying some more aggressive treatments to help, but we really need things to turn around for Toby right now. Please pray for his parents, Ben and Jeannie, and the doctors as they work hard to address and fix Toby’s problems. We know the Lord is in control and is holding all involved in His hands…and we trust Him!

I’m praying this over Trey and Trey’s cousin Toby today…oh Lord may it be!!!

“The Lord sustains him on his sickbed; in his illness you restore him to full health (Psalms 41:3).”

Oh Lord sustain…restore…bring about FULL health! We love and trust You!