Saturday, June 30th; "Mom, when will I feel better?"

Okay, just so you know this is not going to be fun. After a very long day Thursday, we decided to take a family walk w/ the double stroller. Alex really, really did not want to go but by the time we made it to the lake he was saying, "this was such a great idea, I'm glad we are outside!" So life was good. Then about half way around the lake as Zoe and Dad are playing with Roxie in the grass and Alex and I are tagging behind, Alex asks, "Mom, when will I feel better?" OHHHH, the stabbing pain. Nooooo, please don't ask me that! Please, oh please! I'll buy you anything, but just don't ask me that!!!!

I stumbled all over my answer, batted it over to dad who looked like a deer in a semi's headlights. And was completely, unable to comfort Alex or ease his mind. It had to be one of the worst feelings, I have ever experienced. But, we went on, and as kids always do, were brought back to the moment and had a very enjoyable time. I must say the pain is still there, and even more so when you hear what happened yesterday (the following day).

So late Thursday night, I realized that Alex had not been to the restroom all day. Then I did a mental count of how much he had consumed in the week; and it did not add up to much. Since Monday, Alex has had a very tough week. Loss of appetite, symptoms reappearing, sleepiness, and horrible headaches. We contributed all of this to the lack of steroids, since Monday was his first day without them. Well, when we called the docs early Friday morn, they of course, wanted to see Alex.

Well, after spending a full day at the hospital, we learned that Alex's brain ventricles have filled with fluid due to swelling around the tumors. This swelling could be due to necrosis, growth, radiation. No one knows. But his csf (cerebral spinal fluid) is not being allowed to flow freely out of his head. They gave him high dose of steroids via IV. Fluids via IV. And sent us home with more steroids for the next few days. They said if Alex has any problems breathing, is sleepy and/or has worsening headaches to call and bring him back to the hospital. Well, I hate to say but he had a horrible night and breathing seemed very labored. So back we go.

As you may guess, I am exhausted. The kids had a play date scheduled and Alex really wanted to get out of the hospital and go, so STeve and I went to a local bar/restaurant and proceeded to drown our sorrows. We chose beer, chicken wings and black and bleu burgers with fries. The owner even bought us a round of shots! Oh Lord, please help me. After losing 15 pounds eating all the right stuff and no liquor, my body rebelled against me!!! And just to add to the pain, my labwork showed that I have low progesterone. Which explains why my "Aunt Flo" keeps showing up every three days!!! So exhaustion is not a big enough word for how I feel. I have no clue how to get through this day! But I will.

I have to run, Alex's teacher is coming for a visit. Have a wonderul holiday and God bless.

G