Week two...

The hardest part about this journey, for me, is missing my son everyday. That might sound strange so let me explain further. When Brody got sick in January the boy we knew slipped away overcome by the complexities of his diagnosis. He stopped talking, walking, playing with toys. He no longer enjoyed his favorite foods. He continued to develop physically as a 21 month old should, but his illness took away all the joy of seeing him progress socially. This was so difficult to deal with. Brody was the happiest baby and toddler, woke up everyday with a smile on his face ready to start a new day. His vocabulary began early and it was so fun watching him discover the world. In March, when we brought him home from the hospital the second time, it took about 4 weeks and many of these characteristics returned. We wanted nothing more than to have our little guy back. He began walking again in April and was regaining his strength in his legs. His fun little expressions were slowly returning, things looked like they were shifting in the right direction. So, when he got sick again in mid May and spent 4+ weeks slowly regressing, my heart broke all over again. I knew restarting treatment would, on one hand, stop the chaos going on inside his body. But, on the other, the medications would take him away again. The steroids must make him feel crazy inside. His pupils get super dilated and he gets agitated. I know this is all temporary but we just can't get through it fast enough. Not for him and not for me, not for Jeff or Kade. What compounds all of this is the fear everyday that he'll get some sort of secondary infection from having a central line and being immune compromised, both of which leave him so vulnerable. Although we know what to expect from the next eight weeks of treatment, we dont know at all what it will be like after that. Will the medications and treatments for bone marrow transplant be worse? Will he disappear for longer periods this time? Brody is here everyday helping us help him fight for his life but its not two year old Brody. Its not a child running around chasing other kids or playing with toys or getting in to everything in sight. Its a little boy who's body has turned on him not allowing him to enjoy all the beauty and wonder that childhood brings.

I share this because I need our friends and family to know that some days this situation is down right depressing and difficult to deal with. So, if we dont return a text or a voicemail or email or feel like having company, please give us a little space. We know you're there, we know you care and that its difficult for you too. We are fragile spirits in this home and at this point in the game we dont have enough energy to make others feel better. However, there are other days when the sun is shining and Brody is having a good day and we want nothing more than to share it.

Today, June 15, 2010 has been a relatively good day so far. Brody woke and ate a hearty breakfast. Considering he's hardly eaten at all in the past 5 weeks, this is a pretty big deal. He's very thin, much thinner than last time. The GI issues he was having seemed to keep him from eating through much of May. He was down nearly 4lbs so we are anxious to see what he's gained back. He then took his morning regiment of medications and had a nice warm bath. It was so relaxing that he crashed out and is taking a nap! This is a good thing considering he's got a loooonnnnggg afternoon at the doctors today. He also woke up looking a little more himself, we'll see how the rest of the day goes.

Today marks the beginning of week two. We go to Doernbecher today and see Dr. Stork and get Brody's third round of chemotherapy. We've met Dr. Stork only once but she is a wonderful lady. Very thorough, very caring. I want to ask her what she thinks is going on inside Brody's body, what might he be feeling/experiencing. Its hard to know what he's going through. I've never had anything more serious than a cold or flu or strep throat.. I can't begin to imagine what he feels like, what the medications do to him. I'll report back when I have a chance. Right now my other little one needs me to stop typing!