Today was tough. I had an appointment with Dr. Chen to sign consent forms for Ava's upcoming admission. I had no idea I was to meet with him today, Drew was at work and was upset he missed the appointment. Dr, Chen spent some time with me going over the plan for Ava's treatment.  She will spend 3 days in the hospital and receive the campath, then for 3 weeks will be at risk for everything and anything that may come her way while her lymphocyte count is down. This has me terrified, especially with cold and flu season around the corner. After the 3 weeks, she will have the DLI (donor lymphocyte infusion), which in itself has major risks. We were unaware of how serious these were until my appointment today. The DLI's main complication is GVHD (graft versus host disease), severe GVHD to be exact. Because of the risk, Dr Chen will not give her the amount of lymphocytes allowed. He wants to start slow and see what happens, he rather try it this way then risk a life threatening situation (which GVHD can cause). Although we are starting off with a smaller "dose", she still has a small percent chance of getting GVHD, acute or severe. Not only is this one issue, but the DLI may not even work. I can't imagine finding out 2 months down the road that it didn't work. Talk about feeling defeated, I almost thought about not going through with any of it. I had a lengthy conversation about this with him today. What would happen if we just stopped where we were? She is doing great and has plenty of platelets, right?  Dr Chen said that not only is there the chance of her losing her graft, but she may also be at risk for other life threatening issues down the road. This may be horrible to say, but I almost rather have years with her and see what comes up, then to risk having something happen to her in the next few months. Drew and I are both very worried but we need to put our faith in her doctor and believe he knows best. I asked Dr Chen today what he would do if it was his child and he said he would go through with this treatment. I then asked him what his wife would do and he said, she would worry, cry and lose sleep but in the end would go with his plan.  I am doing the same thing, in the same order. I did end up signing the consent forms.
Please keep Ava in your thoughts and prayers.