Wednesday July 19th

Ok, well I just figured out that the last blog has the wrong weekday in the title. Sorry if I confused anyone. Also, since I just received 188 spam emails, I have changed the settings so you have to be a registered user to post a comment. Please don't let this hinder you from leaving comments. That would totally defeat the purpose. It is just sad that some people use blogs like this as a marketing tool. Oh well, I figure their lives are shallow and void of meaningful relationships so they must have no clue! Okay, I'm off my soap box.

Today started off okay and ended okay but took an interesting turn at midday. Alex woke up in a very sad, upset mood. He kept saying "Mommie, I miss my Daddy" over and over again. We got to school and he seemed to be okay when I left. I spent the morning working on several different projects and got to Alex's school in time to catch a prime parking spot in the shade. I was in the lobby when Alex's class began to walk by to go outside. As soon as he saw me, he started getting tearful and asking for his father again. We then went to pick up Zoe and spent a few minutes in her room playing ball with her. When we left, we made a stop at my office and then headed home. Alex started crying in the car and complained that his head hurt. As soon as we walked in the door, both kids started crying. Our neighbor, Heather, was at the door to watch Zoe as Alex and I went to Children's for his physical therapy. Heather came in and Zoe got a clue that I was leaving and cried even louder. Alex was crying for medicine that I could not get to him soon enough. So I gave Zoe to Heather, got Alex his Ibuprofen and two seconds later, he starts throwing up.

Okay, so when we left the hospital they said if Alex has nausea and/or headaches I should call. So in addition to both of these symptoms, I had noticed at the school that his incision was raised and swollen more than usual. So I got Alex's shirt changed, showed Heather where the diapers were and headed to Children's. On the way, I called our nurse in Neurooncology but she was not available, so I called neurosurgery. By this time, we were in the PT clinic waiting for our therapist. Jane Freeman in neurosurgery had examined Alex a week ago and said we could come down and she'd look at the incision. So we met the PT therapist and headed to the 3rd floor. Jane looked at Alex and after some discussion with me then Dr. Handler decided that Alex should have a catscan. Aughh!!

So we head down to the first floor to radiology (where this all began, and my least favorite department) and waited. Alex and I went to get a root beer and snack. His appetite has been poor all day, so I thought I would keep offering different snacks. Anyway, after a significant wait, we were called back. Alex immediately started getting anxious. (Who could blame him?) We got to the catscan room and he really did not want to lay down on the table. Finally, after much coaxing, he was positioned in the machine. I was able to hold his hand the whole time and he actually did very well. He wanted to cry but when I told him that crying would only make it last longer, he was able to compose himself. What a great kid!!

So back to the third floor. Jane called us back to look at the scan and pointed out that some spinal fluid has accumulated on the incision. She also stated that this is normal since he is more active and upright and not of much concern. So we were sent home.

Alex immediately took a nap and Zoe and I shared some time together. We missed out on our dinner with our friends and Alex asked me at 9p why we did not go play with Samantha. Hopefully, we'll make that play date soon.

While we were leaving radiology there was a young couple who obviously had just received very bad news. The mother was holding her baby so close and her eyes were so red from crying it broke my heart. I just wanted to make it all go away for them. Being at the hospital and seeing things like this and very sick children really affects you deeply. I am learning how to deal with being helpless. When Alex cries in the middle of the night and is inconsolable, I'm helpless. When he asks for "no more pokes', I'm helpless. When he can't walk, talk, drink like other three year olds, I'm helpless. It is a very difficult situation to get used to, especially for such a control freak like me! I'm sure it will get easier, but is that a good thing? I guess we'll find out.

So tomorrow is chemo round number two. Whoo Hoo! I'm dreading it. I try to focus on the positives, like the shared one-on-one time with Alex, but that is not really how or where a parent wants to spend "quality" time. The good thing is that Steve will return from his trip tomorrow!! I'm trying to think of some fun activities for us to do this weekend as a family, but maybe just being home and getting some rest is what everyone needs now. We'll see. I must say I have become much more spontaneous in the last month. No time like the present!!!

Ok, please let me know if being registered to leave a comment is a hassle. Thank you all for your continued support. It means alot to us all.

Good night and God bless.

G