Wednesday, May 12

OT worked with Collin this morning before his afternoon tests. She had him sit in a firm foam seat called a tumble form chair. He pushed a toy away when it was offered to him. He was fussy and agitated during therapy, but he did eventually calm down a little and seemed to tolerate it well; he sat reclined in the chair for about twenty minutes and did a good job keeping his head centered.

Over the last day or so, Collin has sounded more hoarse when he is crying, and he makes a lot of noise when he breathes. Respiratory therapy stopped in today and gave him Albuterol to open up his airway, and I immediately noticed a difference in how he sounded. He will have the breathing treatments twice a day.

Neurosurgery stopped in to evaluate the area of fluid collection, called a pseudomeningecele, at the back of Collin's head under his incision. The size of the bump seems to fluctuate, but it is soft. They will continue to monitor it.

Collin had to have a bone scan and a lumbar puncture this afternoon as part of the baseline tests prior to beginning chemo. The bone scan was to see if there was any cancer spread to his bone marrow, and the LP was to see if there were any cancer cells present in his CSF. Bill and I accompanied Collin down to nuclear medicine and I held him until they were ready for him. I laid him on the table and talked to him while they sedated him. One of the nurses there was the one who had talked to us the night he had the first MRI and had brought us to the PICU afterwards, and I knew he would take good care of Collin for us. When the bone scan and LP were completed, they took him to recover in the same room he recovered in the night of the first MRI, where the nurse let us use the phone to call who we needed to call after we were told about the tumor. I feel very anxious every time I have to go back to that area. While we waited for Collin to wake up from the bone scan, we met with the oncologist in the tiny room where they had first told us about the tumor. She reviewed the first round of chemo with us, and discussed some of the long term side effects. She told us there would be a fifty percent chance that Collin will need hearing aides, because high frequency hearing loss can result from the chemo. Because the Headstart chemo protocol has only been used for about fifteen years, there is not much data about long term effects on fertility, or other organs. She also said it is possible to develop a secondary cancer as a result of the chemo. About seven to ten days after the start of chemo, he will feel very sick, develop mouth sores, and start to lose his hair. I thought about his long, beautiful eyelashes that I love, and now they would fall out. Then the oncologist told us that the bone scan showed an area of question in one of his legs; it's possible that it could just be bruising from his unsteady gait and frequent falls. Based on previous blood tests and the fact that in most cases Medulloblastoma stays in the brain and spinal cord, she doesn't expect there to be any presence of cancer in Collin's bone marrow, but she has to be sure, so he will have a bone marrow biopsy tomorrow. He will also have a baseline hearing test tomorrow.