pastorjfreeman

We are still waiting for the doctor’s approval to leave for the weekend, but check out the shirt Trey wants to travel home in if he gets to leave:

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!