Office visit 5/26 and CT scan

05/26 11:50
ANC 4498

We went to the clinic just for a blood count and to have Alan's port accessed in preparation for his CT scan at the hospital. While we're at the hospital we'll also have a new NG tube put in - this time on the left side. We had good news and bad news for the docs.

Unfortunately, Alan's weight has dropped since we stopped doing the daytime feeds last week - from 22 lb 9 ounces last Monday to 21 lb 12 ounces today. The docs weren't happy about it but didn't seem overly concerned. We'll increase the rate of the night time feed to see if we can stop or at least slow down the weight loss. Alan is still not interested in eating.

The good news is that Alan has been so much more active in the last week. When we went to get him up this morning, he had pulled up to standing in the crib! He was still putting all his weight on his good leg, just using the right leg to balance, but it was a very encouraging sign that had the docs very pleased. His tripod crawl has been gaining more and more speed. When he sees the gate to the stairs open, he starts a rather impressive sprint. Whether it's because he's not being pumped full of Pediasure during the day or because his hip bone is starting to heal, we're just happy to see him so playful! We had finally digitized the tape in the camcorder last night, which included Alan and Kevin frolicking with bubbles before the diagnosis. It was bittersweet to see Alan running around with his big brother and we're eager for him to be doing so again.

Today's scan is just an interim assessment - we'll see the results tomorrow. But we have six more weeks of chemotherapy scheduled, and then another scan at the end of June. The docs will compare the results then - they want to shrink the tumor with chemotherapy as much as possible before talking about surgery. The treatments have been doing their job, for which we are very grateful. We've talked to other parents whose kids have gone through chemo and radiation with no effect on the tumor, so we are trying to not to take the shrinking of Alan's tumor for granted. But darn, we're impatient to continue on to the next stage and get that thing out of him. It's hard to be rational when you are reminded of what your baby was like before the cancer.