Tuesday, May 24, 2011

Keeping On

No new from us lately because PRAISE THE LORD nothing to report. Brian is doing well. He had five weeks of weekly chemo (remember that meant we were at the hospital two days a week) and now has moved to a every three week schedule. He has settled nicely in the routine of going to chemo every three weeks. That doesn't mean that he is "settled" with having to go to chemo. Every single time we drive by the hospital Brian tenses up and you can hear the tension and worry in his voice when he says, "Why are we going this way, Mommy? I don't have to go to the doctor today, do I, Mommy?"
   It makes me sad for him. Other things that are kinda sad...

getting this letter in the mail. Notice it says Childhood Cancer Research Network Participant. Yes, thanks for reminding me.
During our "off" weeks of chemo we almost feel normal. I guess chemo is our normal, but you know what I mean. Getting mail about childhood cancer research is really depressing. It's a reminder that we have a child with a serious illness. He is not like a "normal" four year old. In February I took Olivia to the pediatrician for some bumps on her skin. I was concerned that she had LCH because, at that time, she was the exact same age as Brian was when he was initially diagnosed. Our pediatrician reassured me that Olivia just had some dry skin and needed lotion daily, but she totally understood my worries because of what we have experienced with Brian. Some of struggles that come along with what we are dealing with is not seen or understood by those that just see us from a distance. Sometimes we can't even explain with words what we are going through. You kinda have to live it to know. That is what we found so encouraging about meeting the other families back in December at the Wings of Hope Christmas party. We didn't have to try to explain what we are going through, they knew. Of course at that same party we had someone ask if Brian had picked out his Make a Wish dream. I instantly thought, "oh, we don't qualify for that." (But he does.) It's crazy, we go from identifying to denial.
We have gotten mighty comfortable with our role and relationship with the hospital. A few weeks ago I took Brian in for his bloodwork the day before chemo. There was a new tech in lab (it had been a couple of weeks since we had been there because we had just moved to our new three week schedule) and since I am experienced I started to notice she wasn't doing things the way we always do.When the receptionist says "Hi, Carrie, how's Brian doing, we didn't see you the last two weeks, is everything OK?" I think I can say we come here often enough that I know the drill. So of course I say something to the tech. I let her know that we use the "butterfly" (I am not a medical professional, just the mommy so I know the terms as they are relayed to a four year old) and fill two separate tubes of blood. The tech assured me that the needle was the same size and she knew what she was doing. She then drew one syringe of blood and said done. Feeling like that just couldn't be it, I again questioned. Annoyed with me being "that woman" the tech looked at me and said, "YES, that is all I need, you're done."
Wouldn't you know not three hours later the lab calls and tells me I have to bring Brian back in because they didn't get enough blood to do all the tests. I asked if they had run the test to check his ANC levels. I know that this is what they check to see if Brian's counts are OK to receive chemo the next day. She said yes so I knew that we had what we needed for the next day and that we were going to be back in the lab three weeks later for all the other bloodwork. I then told her that we would not be coming back in. She then said we would have to come first thing in the morning. I informed her we would be at chemo, and that  we would not be coming back in until three weeks from then. 
Other news, Brian's best buddy, Ellie, is moving away and that is kinda sad. B and Ellie had a great play day together last week and we are going to squeeze in as many as we can during the next few weeks.  

 Please keep praying for Brian as he has chemo followed by five days of steriods every three weeks through next March. We will do our best to keep you all updated as much as possible. Sorry for the extended absence this past month.