Long Week

You can see all of the his hair shedding all over the hood of his coat.
Normal day at clinic.
{sniff sniff} can you see the bald spots? He has so much hair and I have never been able to see spots but it is shedding pretty badly.
Bad close up of biggest bald spot.



Today is the beginning of a really long week. We have five days of chemo, Irinotecan and Vincristine AND five days of radiation. Vincristine is only on Thursdays and only takes a few minutes to administer but Irinotecan is like an hour I.V. drip, and usually requires a fluid bolus before and a flush afterwards. This means we are probably looking at about 2.5 to 3 hours in the clinic. I am feeling pretty well today but I have a little bit of "unsteadiness" lurking deep down. I am trying to stay positive but it is so hard to always have faith, must be one of my "tests". Sometimes I just really wish I knew the end result and just start preparing myself for the outcome, either way, but like one of my wise friends said "the journey is what builds our character". I also feel that knowing the outcome would invalidate hope, and hope is so wonderful, it gets me through our days. I may have already mentioned this quote but it is one of my faves thanks to my wonderful friend Paige. "Make the courageous decision to HOPE. Even when EVERYTHING around you contradicts this hope" -Dieter F. Uchtdorf. I hope for so many things but I think I am looking too far in advance, which makes me feel like I am balancing on a wobbly bridge. I need to take one day at a time, or at least one treatment session at a time, instead of looking to the summer or even farther, to the end of treatment. I just wish this was all a bad dream and I will wake up tomorrow to our cute little healthy family. I yelled at Belle this morning and she ran into her room, slammed her door, jumped into bed and sobbed. I felt so bad. I didn't need to yell at her. I was just having a chaotic morning trying to get everyone ready and maybe I let me low spirits get to me. I stopped what I was doing and went into her room to hold her. I apologized to her and told her how much I love her. She is having a hard timing adjusting to our "new norm". She feels neglected, and scared, and wonders why Spence is getting all of this attention. He looks normal for now and he feels normal for now but she doesn't understand the severity of his "illness". She is such a wonderful girl. She runs to both of her brothers' aid whenever they need it. She helps me out with Gavin so much and I just hope she knows how much I love her. Speaking of my Gavs, I will have to try and get a picture but he got his first tooth this weekend! On Saturday, March 6, 2010 Belle kept saying "mom I feel his tooth" over and over. Nate told her to get her fingers out of his mouth. I kind of forgot about it until he grabbed my finger and chomped down! She was right, he does have a tooth! I know this post is a little sporadic but I am keep remembering things that I want to write down. I mentioned last week that Spencer's hair is falling out. It is shedding like crazy. When I first noticed it, he started crying, which of course makes me start crying. What a scary thing for him to experience. It has to be traumatic. We are trying to hold on until the heading shaving party on the 20th of this month. The Dr. today told us that he thought he could hold on that long. Pray for Spencer's hair!