Office Visit 6/26

06/26 10:45
ANC 1189

The whistling sound you hear is that of Alan's white blood cell count plummeting. We were expecting it though, and it's still a decent level. Nonetheless, the Neupogen shots continue over the weekend.

Alan has been weighing the same at each visit this week, give or take an ounce. He's been getting about 1000 calories a day for the last couple of weeks, and though he has gained almost three pounds since the feeding tube went back in, it's mostly bounce back weight gain to make up for everything he had lost while he was tube-free. Now that his weight gain has plateaued, we'll need to slowly increase the amount he's being fed, starting with increasing the rate of his daytime boluses. While we don't expect the same rate of weight gain he's had, he does still need to gain weight.

Doc P brought up radiation therapy today, something we thought was off the table when the Infantile Fibrosarcoma diagnosis was confirmed. With the tumor growing off his pelvic bone, Doc P is worried that some cancer cells might remain on the bone even after surgery. The other choice, removing the bone where the cancer cells might remain, is not an option. Doc P also confirmed his agreement with Doc A, that we will almost certainly start a new schedule of chemotherapy after his MRI.

While this tumor is usually just treated by surgical resection, the surgery-only option is only available if it can be cleanly removed. In the case of our fellow IF friends, Gavin had so much tissue removed from his arm that Jodie had to send him into surgery not knowing if he would be coming out with his arm or not, and he still has reconstructive surgery scheduled in the future. Liam had to have a lung and affected bronchi stem tissues removed so he could be entirely clear of the cancer cells.

Now that we know that radiation is back on the table, we don't feel so bad about additional chemotherapy. If the extra time for the tumor to shrink and Alan's pelvic bone to recover means that we can avoid radiation without removing anything except the tumor, we're fine with that!