pastorjfreeman

Well…Trey is doing pretty good. Even though his numbers are low, they are good considering all he has been through and the level of medications he is taking daily. However, his doctors feel Trey’s morale is a little low and would like to give him a couple of days away from the hospital. So…if Trey has a good day today and handles Campath well in the morning, he might get to come home for the weekend. I think this will be a very good thing for Trey.

Of course, we are a little nervous taking him out of the hospital, but we feel we will be able to keep him isolated and safe for a couple of days…plus it will lift his spirits tremendously. Trey is not depressed or anything like that, it just wears on you being in the hospital for so long. Getting some sunshine and fresh air will be great…along with some quality time with his family.

His rash is still concerning to our doctors. Emily and I think it’s improved slightly, but it’s still very pronounced. It would be FANTASTIC if his rash started disappearing significantly…quickly. Please keep that as a matter of prayer.

Any way, I hope Trey gets to go home. He knows not to get his hopes up, but he is very much wishing he can have the weekend at home.

One more thing…we do not know when Trey’s next transplant will be yet. They want to get the rash under control first. Our doctor’s will be meeting us sometime in the next week or two to discuss what is next for Trey. We will update you with those details when we have them. We love you and GREATLY appreciate your prayers!

Jeremy

School is over in two days and it is hard to believe that Trey missed virtually all of his kindergarten year. He has worked hard to stay up with his school work all year though. He has done so good. We are hoping he will be able to start the first grade on time…with all his friends. It’s a long shot and the odds are not in his favor, but God likes to go against the odds sometimes. Here is a picture I took with Trey in early September when he had just started kindergarten:

After a long and eventful first part of the week, I finally made it back with Trey. I have missed him BAD!!! I’ll get about 3 days with him and then I have to head back to Newcastle on Saturday for a funeral I’ll be doing.

I’ll write an update on Trey tomorrow after I see the doctor…so probably around Noon. For now, I’m just going to enjoy being with him.

From Emily:

Nothing really new to report on Trey. He is doing well. He is not requiring any pain medication, and his spleen is staying down. His appetite is also much better. The rash is still there, and the doctors are still deciding what to do about it. He has a procedure scheduled for next Tuesday if it is not much better….We are applying creams daily and increasing the campath does slightly.
Trey is such a strong little boy, but he asks everyday when he can go home. Please pray for the days to pass quickly for Trey and that God will give him peace as he waits patiently on His perfect timing!’

Trey is looking pretty good. He continues to have no fevers, or tummy pain…and he’s eating almost normally again. His new craving is the TWIX bar. He would eat 6 of them a day if we would let him. The doc also disconnected him from IV fluids today too, so now he can walk around without being connected to the medicine pole. That’s really great for him.

The rash is still very pronounced. I think it may be a bit fainter in color, but it’s still very much there. Since we know it’s the lukemia cells that have infiltrated the skin, we are hoping the Campath will target those cells as well now that the abnormal cells in the blood seem under control. We will see. The creams don’t seem to be working…if they are, they are slow moving. Any way, we needs signs of improvement by Monday morning. Please pray about that.

Some other good news is that Trey’s spleen still feels smaller, and his blood counts are looking better. We also continue to praise God that we have a match for Trey. It will be a few weeks before we do the next transplant though. So…it’s looking to be a long summer for all of us…and we are already praying this transplant will be just what Trey needs to live a long and healthy life. Oh Lord, may it be!

Also, my nephew, Toby, has improved. They took him off the ECMO machine today. He’s still on the ventilator, but his saturation levels are all staying up right now without the ECMO machine help. That’s a huge improvement from last week. The next step will be to wean him off the ventilator and see how he does with basic oxygen help…then the final step will be to see how he does breathing on his own. Ben and Jeannie are grateful and thankful for all this. Keep praying for them too.

Any way, life is interesting. Some days I feel very strong, and other days on the verge of collapse. We know God is with us and His will is being done. We are just holding on to Him and trying to endure with His joy! We are blessed to know and serve the one true God! Please keep the prayers coming. We love you.

Trey is getting ready to have his Campath today. We are upping the dosage just slightly in hopes of trying to really get to the cells that have infiltrated his skin. Please pray that the Campath will continue to keep the abnormal cells suppressed in the blood and start to go after the cells in the skin.

Trey’s rash is still very pronounced…it may be a touch lighter, but it’s just hard to tell if the rash is any better. Please continue to lift him up. The rash needs to be resolved before they can move onto the next bone marrow transplant. The have found a donor though…which is a huge answer to prayer. We, of course, do not know the donor’s name, but I’m told he’s a young man in his early 20’s. We are so thankful to have a match.

Trey will have the weekend off from Campath, and we are hoping that when Monday rolls around, that his skin will look much better. We know you’re praying and we really appreciate it! Please Lord…kill the bad cells…ALL OF THEM!

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