This week started off pretty good. Brendon was feeling great and looking forward to trick-or-treating tonight. He went to school on Monday and Tuesday and he had a lot of fun. His appointment for his spinal dose of chemo was supposed to be on Thursday, November 1st. We received a call from the clinic Monday afternoon telling us that they had to reschedule his appointment because they had so many people on Thursday. So they told us we had to be at the hospital on Wednesday, October 31st at 1pm. Now Brendon can't eat or drink anything before these procedures so they usually try to do them in the mornings. I guess they couldn't get him in before then. I was also concerned because sometimes it takes him a couple of hours to wake completely up and be ready to go.. But I took it in stride thinking everything would work out. Yesterday when I picked Brendon up from school he told me that his shoulder was hurting again.. It was the exact same place that it hurt when he was first diagnosed in April and then again in August. His pain was pretty bad (6 or 7 on a scale of 1-10, 10 being the worst) when it was time for bed so he had to take a couple of pain pills. He slept through the night and when he woke up this morning his neck and shoulder were still hurting.. I gave him some more pain meds and called the doctor to see what they wanted to do. I figured I'd let them know just in case they wanted to do any scans while we were in that area. They were not extremely concerned because he did not have a fever or any other symptoms and when this happened in August everything came back fine. They said to give it a day to see if it goes away. Last time the pain lasted for about 4 days. I told them that I was fine with that as long as Brendon was not in danger and as long as the pain pills continued to work. I wanted Brendon to be able to go trick-or-treating as long as he was up to it.. So the morning started off with Bren being in pain and hungry. Not a great way for him to start the day he was looking forward to.. I told the doctor and the nurse that were performing his procedure about his pain and they wanted to get an x-ray just to make sure all was well. After the x-ray we went back to the ASU department where we were told the nurse wanted to talk to us about the results. Right away we were extremely scared and anxious. Now it's about 2:30pm and Bren has only had a few crackers and some ginger ale. He's grouchy and hungry and wants to go home, understandably.. We waited for about 30 minutes before Andy decided that maybe there was a miscommunication and went out to the nurses' station to explain that we had left our cell number and thought we were going to be called with the results. Another 30 minutes later the nurse asks me to come to the station to talk to the nurse that performed Brendon's procedure on the phone because she's not sure how to transfer it to the room.. By this time I want to vomit from the nerves.. The nurse on the phone tells me everything looks fine. So I ask, "What about his pain?". They don't know what's causing it. He has no fevers, coughs or any other symptom.. Huh. What do I do? Keep an eye on him and keep giving him pain meds. At least there were no new masses or lymph's. Good news.. Still a mystery as to what's making him hurt.. So we finally get ready to leave and as he's being wheeled out of ASU he starts to get really nauseous and we have to stop and get him some more medicine. We requested a smaller dose so that he wouldn't be knocked out. He hates taking meds that make him fall asleep.. We got home around 4:15 and Brendon had another dose of chemo that needed to be given to him at 4:30 by one of his home health nurses. He was so sleepy from the meds at the hospital that he could barely get out of the chair. We decided to let him rest for a little while to see how he felt for trick-or-treating. Around 5:30 we told him that if he felt up to it that he would have to start getting ready to go.. He stands up and can barely walk because he's so nauseous and tired.. He put his costume on and almost threw up. By then we knew that he was not going to make trick-or-treating. He was completely devastated and angry, as was I. He was SOO excited and he couldn't even go! So Andy, being the fantastic dad that he is, made the best of it and went out to get us a movie to watch as a family and brought Bren back Sour Skittles (his favorite). It's not the same as going door to door, but what could we do? I know that not being able to go trick-or-treating is not a huge deal in the grand scheme of things, but I'm so sad for him! Brendon is still in pain and he threw up before bed.. We are exhausted, scared and frustrated with this horrible disease! Anyway, here's a picture of Bren's costume. He's smiling because he didn't want to show the tears..
Well, on to happier things.. Today Brendon received a disc in the mail that had all the photos that were taken of him for Project Tomorrow. They were so cute! These are pictures of Bren practicing his modeling skills...
There were also all of the pictures that Brendon took of Andy on the disc, but I'm too tired to put together another slide show..
Please pray for us this week... I will keep you all posted.. I also want to clarify that all of the staff at the hospital and clinic have always been fantastic! I don't blame them for anything that happened today.. I think it was just one of those days.. Thanks for letting me get rid of a little frustration... I appreciate and love you all! ~Amber
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