Thursday, August 19

We had expected to be discharged from the hospital at the end of the week, but yesterday we were told that since Collin's counts had started to come up, we could go home that day! So he had his OT and PT sessions in the morning, and then a blood transfusion in the afternoon. We were finally ready to leave in the early evening. When I pushed Collin in his stroller to the elevators, he was so excited his whole body shook, and he clapped his hands! It was so nice to be home, but by that time of day we were all exhausted, and Collin was fussy. When I went to give him his bath, he was all sweaty from crying, and his Broviac dressing had become unstuck. So even though it was the last thing I wanted to do last night, I had to do a dressing change; at least it went more smoothly than the last one I had to do at home.

Today I had to get re-organized and back into a routine. I was able to get Collin's medication schedule organized more easily this time, I think just because I have more practice handling things on my own than I did when we were discharged in June. Unfortunately we have to give the Neupogen shots again to boost Collin's blood counts (and by "we" I mean Bill!). When I went to draw up the Neupogen for the injection tonight, I didn't understand the amount the label said to give, so I called the 7 West nurses desk. I asked the nurse who answered the phone my question, and luckily our oncologist was right there, so she got on the phone and clarified for me. It's a good thing I called; as it turns out, it appears there was an error on the label, and we would have ended up giving Collin three times the amount we were supposed to. Collin spent the day being fussy and clingy; I guess just like I have to re-adjust to being home, he does too. Hopefully we'll both feel more settled in a few days.

Collin has an MRI tomorrow to see how things look. Based on the results, his oncologist will decide whether the next round will be mostly outpatient like Round 3 was, or if we will be re-admitted for another 3-4 week stay like the round we just completed. Then she expects that we will begin the final high-dose round with the stem cell rescue on October 11. Hopefully we will be finished and home by Thanksgiving. I remember how in April when we were told about the six rounds of chemo, it felt like it would never end, but our oncologist told us it would go faster than we thought. And it has; I can't believe we're more than half way through.

Looking back over the last few months, it's amazing to see how far Collin has come. He's doing really well, all things considered. But there is a part of me that fears it's too good to be true. I don't know how to live with the constant fear that my baby will be taken from me. Every time I think about the fact that he has cancer, it's like a slap in the face. I still cannot believe it. It takes my breath away.