Tuesday, April 27

This was the day we were to get back the biopsy results. Our oncologist met with us that afternoon to tell us that Collin did indeed have Medulloblastoma, and she gave us a brief overview of what his treatment plan for chemotherapy would involve. He is too young for radiation; the goal is to treat him the best way possible while preserving his best chance at having a normal life, and at his age radiation would cause too much damage to his body, IQ, etc. Instead he will be put through five rounds of aggressive chemotherapy which will take place over six months, 80-90% of which he will spend in the hospital. The final round of chemotherapy will involve a stem cell rescue, where they will take his own stem cells out of his blood, wash them of any cancer cells, and then replace them into his body after the aggressive chemo destroys everything else. He will lose his hair, and endure the mouth sores, nausea, vomiting, etc. that go along with chemo. His immune system will be obliterated, so he will stay in the hospital where they can monitor him closely for any infection.

Collin had been harder and harder to feed at home, especially over the last few weeks. This child, who ate more at Thanksgiving than the rest of us, wouldn't even eat his favorite foods anymore. We now realized it was because of the location of the tumor; what I thought was picky eating was actually because he was having more and more trouble swallowing. That, combined with the vomiting (also due to the tumor) resulted in weight loss. Now due to the condition he was in after the tumor resection, he was still unable to eat by mouth, so the decision was made to place a feeding tube. They decided to use a nasojejunal, or NJ tube. It is a thin, very flexible tube that is inserted into the nose, down the esophagus, and through the stomach into the small intestine.

The tube was placed early Tuesday evening. I held Collin's hands as they stuck the tube up his nose and down into his belly. Then, to make sure it was placed correctly, a portable X-Ray machine had to be brought to the room to take a picture to make sure the tube was in the right spot. It wasn't, so they had to take it out, re-insert it, and take another X-Ray. Luckily, the second time it was where it needed to be.