I’m trying not to make too much of this day, but it was a much needed breath of fresh air. We truly are on a roller coaster with Trey and never know what each day brings…yesterday had some lows and today had some highs!
First off, Trey slept great last night…best nights sleep in weeks (which means I slept good too). Then he woke up in a great mood, full of life, and just looked better. His blood counts looked good and his lungs are sounding a little better. The pulmonologist came by and thought Trey looked better too. Trey also had an ECHO done of his heart today, just to make sure there is nothing going on there.
Trey also wanted to watch TV this morning, play with his toys, and he even asked for something to eat and drink (something he’s not done in about a week). I just couldn’t believe the change from one day to the next…I was and am so grateful!!! I am giving ALL glory to God!!! His skin also continues to improve little by little. He still has a long way to go, but I feel for the first time it’s headed in the right direction. Again, I’m trying not to make too much of all this, but I’m praying this is the first day of the rest of Trey’s life…may the healing begin today and may he never look back. Oh Lord, may it be!
Trey also received Campath today and handled it very well. As always, we will just have to see what the blood work reveals. He did not have much of a reaction today, so we always hope the bad cells have not developed a resistance to the Campath…again, we will just have to wait and see. We may just need to give a higher dose of Campath on Friday if the blood work reveals too little of a response.
At this point we won’t do another flow cytometry test until next Monday. So, Trey will get photopheresis tomorrow and Thursday, Campath on Friday, Romidepsin (most likely on Saturday, IVIG on Sunday and a day of rest on Monday. We are desperately praying for all these things to work like we know they can. Please pray for tremendous wisdom for our doctors as they evaluate Trey and make decisions about what treatments to use for him.
I’m praying for another restful night for Trey and hope he wakes up as good tomorrow as he did today. Please join me in that prayer.
One of the hardest parts for me is knowing how far to push Trey. There are some things he just does not want to do. I’m sure the nurses think I’m a push over, but it’s just hard getting on to Trey about anything. I hate that he has to go through this all and I try to pick my battles with him carefully. I’m just grateful for each day I get with him and pray I can have wisdom in how to parent him during these difficult days. I assure you…it’s not easy.
Any way, thanks for your prayers. Only God knows what we will wake up to tomorrow…but I would be so glad it tomorrow was much like today.
pastorjfreeman 