From Joeys Dad So we got the results of the MRI today and they were a little better than we expected. We knew from the changes in Joey over the past 2 weeks that the swelling had gone down because of the steroids and that the shunt was doing its job. That allowed him to feel better, walk better, eat better and not be so miserable and uncomfortable. The MRI also showed a little shrinkage in the size of the tumor. While that is good news were hoping the radiation continues to make it smaller. Also as long as Joeys blood work from today is good, he can start on the vaccine they told us about that were also hoping helps shrink the size of the tumor. We know nothing will stop it from coming back but the longer we can keep it shrunk or at bay, the longer we get to enjoy him here with us. Well find out about blood work Monday when we go back to hopefully start the vaccine. He hates going there and getting shots but we made it a little easier for him today. We told him in advance that he should just expect that they may need to do blood work, that way if they dont its a bonus. If they need it, at least hes prepared. Yesterday he wasnt fully prepared for it. Not sure if it hurt more yesterday but after they put his needle in, he and I went to the bathroom so he could pee. I had to help him because they had a needle in his arm for MRI meds and he couldnt bend it to be able to untie his gown and pants. I was on my knees tying them back up and was eye to eye with him when he looked at me and started crying. I knew he was upset but not enough to cry. I felt so bad for him and said a few things to him about the stupid nurse we had. Once he felt better we walked out and I guess a few people heard him and asked if he was ok. From now on well prepare him for blood work even if its not planned. That way hes not surprised with it and I can make sure Im right next to him when its done. I jokingly told his nurse today that if she hurt him I would be hurting her. He giggled a bout it. Such a small thing but it feels so good to see him smiling and laughing again. Last night he had a great time at the millers house with everyone. Today after our hospital visit he wanted Olive Garden again. Who didnt know that. Anyway he ate his usual, everything in the place. Our waitress saw our shirts or knew who he was and that he loved Olive Garden. She came over after lunch with a shirt, apron, pin, hair net and some other things. She said she heard it was his favorite place and wanted to know if he wanted to go behind the scenes and see how his favorite meals were made. We walked through the kitchen where the staff was more than happy to say hi and welcome him. Got some pictures Cindy Eichelsbacher Fabus will post later. He was in heaven seeing everything. Also got his picture with the manager and some staff. The best part came when the waitress returned with our check and told us that someone in the place paid for our meal for us. Not sure if it was management, staff or customers sitting around us who had witnessed everything. Either way it touched us deeply and we are very appreciative of who ever did that. Nick and Joey were asking why she was crying. I had to hold back some myself. I know my kids will appreciate some day all the kindness so many people have shown us. I just wish I could tell Joey but the truth would be so devastating to him. We usually tell him that people want to help because they know the struggles he is going through. Im extremely sad but very touched by how much Joey is touching everyone around him. Always hoping for that miracle, if not I hope we get another year or more with him. Thank you all for the prayers and support and for caring so damn much about Joey.
Posted on: Thu, 04 Sep 2014 18:10:30 +0000