January 22, 2011

My husband must have read my blog post or just picked up on my gloominess because he volunteered to stay at the hospital with the baby so that I could go home (to my actual house) and sleep in my own bed and spend time with my boys. I was worried at first because Grayson is not doing well, but I knew I needed a break so I left Grayson with Tom and Kasey (our nurse) and trusted he would be well cared for in my absence. It took me a while to actually leave the room because I was having second thoughts, but once I got on the elevator I was really excited. I was speed walking through the hospital and then when I hit the doors, I actually ran to my car. Not just because I was alone in Baltimore City but because once I actually made the decision to leave I couldn't get home fast enough. I listened to the radio and sang along and just felt happy to be driving and to see the snow. When I got home my boys met me with bog hugs and kisses and it just felt so good to see them outside of the hospital. We stayed up late playing Wii Just Dance 2 (quite the work-out) and MarioKart. I was in stitches because my 3 year old was actually doing the moves. We all had such a fun time and I got to sleep in my own bed and slept in. I had breakfast with them and took time to take care of myself before I went back to the hospital.

Of course when I got there, reality hits and I look at my baby and I am immediately reminded of how sick he really is. He is bright red from the GVH skin rash. It is sort of like a really bad sunburn complete with peeling, dryness and itching. I have socks on his hands because he is constantly scratching despite the medications they are giving him for itching. He is on benadryl, atarax and methylprednisolone (steroid to treat GVH). The only relief is that I continually rub aquaphor all over him. I keep the open container by our bed and rub it on him all through the night and all day long. It doesn't stop the itching but I think me just rubbing on his skin helps relieve some of the itch.  His skin is also very sensitive. So sensitive that when he had the liver biopsy, they put tape over his eyes to keep them closed and when they took of the tape, it ripped the skin away from the bridge of his nose. His skin is so prone to break down that anytime he scratches his skin open and he bleeds. Poor little man has scabs all over his face, head and tummy. He is still beautiful and despite the discomfort he still smiles for us.

His skin GVH is not the only concern now. The liver biopsy showed GVH in the liver which can be harder to cure than the skin. Unfortunately the usual treatment of steroids has not been effective for him so they added another immune-suppressing drug called Tacrolimus. They also still have the option for light therapy for the skin but that is only going to be an option if the liver GVH is under control. They started this new drug on Thursday night and it is now at a therapeutic level in his system. We have until Monday morning to see if the bilirubin has decreased. If it has then we will start the light therapy for the skin which is supposed to be very effective. If this Tacrolimus does not make a change and start decreasing his bilirubin and healing his liver, then we will have to treat his GVH with more chemotherapy. It will mean another round of high dose chemo aimed at the T cells in his peripheral blood opposed to the stem cells like the chemo from his bone marrow transplant regime. To hear the words chemotherapy again makes my heart ache and my eye sting but God is in control and he knows what he is doing so I cannot worry I can only pray for peace and understanding. In addition I am praying that the Tacrolimus is the drug that just works for Grayson's liver and that we can start light therapy Monday to start treating his skin.

Grayson is making progress in some other areas. He has been eating small bits here and there. He ate almost a whole container of baby food (applesauce). Occupational Therapy has been coming to see him and says there is nothing physically preventing him from eating but rather a mental block. His mucositis was pretty bad and he associates anything being put in his mouth with pain. He is getting better though and I hope that he will be able to start taking more by mouth and less by IV. He also had his NG tube replaced. He sneezed out his first one (powerful sneeze). The second one he was awake when they placed it and it was very unpleasant. He is taking breast milk through NG at a constant rate 24 hours a day to keep his liver happy and to try to increase his appetite. He does scratch at the NG tube because it is taped to his face but overall I think he is doing pretty well with it.

Please pray for his bilirubin to come down by Monday and continue to fall and stabalize with the Tacrolimus. Pray for no chemo!!! Pray for relief and healing from the itchy, red, raw skin.  Pray for continued strength for my little guy. He has been through so much and he really is so strong. One last thing. Grayson's lower eyelids are also having problems. They seem to be separating from his actual eyeball. Not severe yet but the doctor says there is a condition like this associated with chronic GVH. WE DO NOT WANT CHRONIC GVH (Grayson has actue GVH right now). Please pray that this is something else maybe just irritation/inflammation from the skin GVH. 

Thanks and love to all of the individuals, families and churches praying for our family. You are what is helping us get through each day.