Today may be the day we've been looking forward to for over a week now. CJ may get to come home today. Everything is riding on two tests - a bone marrow check and a spinal tap. Depending on the results, he may be home by this afternoon.
Once he is home we will still have to be vigilant about exposing CJ to viruses or infection. Aunt Christy and Ganny (Sheree's mom) have been cleaning the house in preparation.
CJ's blood counts have been low so he received additional blood and platelet transfusions yesterday. Once he is released from the hospital he will make weekly visits to the clinic to receive his chemo treatment.
In addition to chemo, CJ takes large doses of steroids each day. These drugs work in conjunction with the chemo to kill the cancer cells. They come with some side-effects that may be a little hard on CJ and the family. We expect his little body to begin to swell. He may have an insatiable appetite. His sleep patterns will be affected. He will be sleepy, but won't be able to settle enough to fall asleep. Once the hunger sets in, it will be hard for him to have the feeling of being satisfied. Sheree will have to monitor his food intake so he doesn't gorge himself. Each child seems to have his or her own favorite food during this treatment. For ViviAnne it was mac & cheese. She couldn't get enough of it. CJ so far is showing a preference for McDonald's sausage, hashbrowns and chicken nuggets. Greg has been making 6 - 8 trips a day to the McDonalds on the first floor.
In preparation for CJ's homecoming Papaw Bob and I have stocked the fridge with sausage patties, hashbrown squares, chicken nuggets and ketchup - everything gets doused in ketchup!
I'll post another update once we know the results of today's tests. Here's hoping we are on to the next stage - outpatient treatment!
Hey guys. I don't want to overwhelm you any more than you all ready are. SO I will just say this because it has PROVEN to be the case for us the past these past 8 months and 1 day. (but who is counting?)Amazingly enough God will provide. Your job is to take care of your family AND yourself. God will take care of the rest.
ReplyDeletePraying for you nightly. Call when you need to scream and/or cry to vent. I get it.
Love
Kristen
During our first two weeks of blur, I ran into ViviAnne's first resident in the elevator. She was "off the clock" with her husband who had brought her dinner. I didn't want to bother her in this situation but she must have seen the emptiness, confusion, and fear in my eyes. I'm not sure what incoherent questions I threw out at that moment. But she said something very simple... She explained that cancer was in very general terms the overproduction of normal cells. With leukemia or at least ALL it was the overproduction of cells to compensate for the production of immature cells.
ReplyDeleteI know this is not the most medial of descriptions and I'm probably butchering the accuracy of what she said. But I crumbled right there. I had gone through the whole first week thinking some kind of foreign disease was eating away at my daughter. Killing myself with questions like: What was it? How did it get there? Did I give her this? I was wrong! What she taught me in a five-minute conversation was "my baby DID NOT have something in her body/blood that was not supposed to be there".
I know this doesn't help or change anything. Hell, You probably already know all of this but I just want to be sure that you aren't going down an extra (unnecessary) path of emotions that I/We did.
If you run into a doctor while they are not treating you their guard is down and they can speak from the heart not from the text book. They honestly care about you almost as much as they do your baby.
When you get home get a cardboard box. When the bills and EOB's and Insurance BS start rolling in...throw them all in the box and ignore them. There will be plenty of time to deal with them later.
God, I wish I didn't have to share this stuff with you!
Love you all,
Brent