May 17, 2012

SD no longer has to take chemo in his port at home. We had two 4-day (Thursday - Sunday) rounds that we had to give him. At the end of the first round, we had to de-access him at home. The needle in the picture below is what goes into his chest every time we go to clinic to draw blood and inject chemo (click on the picture to see it full-size). Mandy gave SD chemo through his port on eight different days; she was very brave, and so was SD!

As planned, we took SD to Munson on Monday to get his counts checked. He didn't look extremely pale to us (he has always been Very Fair; there aren't many more shades of pale one could be) and had good energy, so we figured that it would be a quick visit. It turns out that his counts had actually gone down quite a bit and that he needed some blood. Just getting that information took over two hours and we had not come prepared for a long stay! They allowed Emma to be with us, so it was a bit of a challenge to get through a long day confined to a little room, but we managed. Actually, the nurse was extremely impressed with how well the kids did - she was still talking about it when we went back today!

The transfusion took three hours, but we were at the hospital between 6 1/2 - 7 hours. Thank goodness there is a Meijer so close by! Stephen went out to pick up some food and a couple things to occupy SD and Emma. We were given our own room because SD was so neutropenic that the nurse wanted to keep him away from other people as much as possible.

After his transfusion, we were amazed over the change in SD. As mentioned above, he was energetic and cheerful before (although we were still dealing with the bouts of odd behavior mentioned in our previous post), but he had SO much color and was even more cheerful, laughing and giggling all the time like he used to do. The frightening thing for us is that he was that low in his counts and we didn't recognize it at all. We just can't get over how a child needing blood could still be as active as he had been.

SD had his counts rechecked today. While his hemoglobin is way up thanks to the transfusion (11.3 as opposed to 7.7 on Monday), his platelets and neutrophils have gone way down even since Monday. They haven't been this low ever, even during induction (except when he didn't have any neutrophils during the first few days after diagnosis). His risk of infection is very high right now, so we still need to be especially careful about what he's exposed to. We are just keeping him at home or outdoors, aside from the necessary hospital visits. He needs to go back on Monday for another blood count, and they expect to have to give him platelets that day.

We're so thankful for blood donors! SD's life was saved by multiple blood transfusions at the end of November, and he may need more transfusions before he's fully recovered. To all blood donors everywhere, we say *Thank You*!