Saturday, August 21

Thursday night we didn't get a lot of sleep; Collin was very restless, and for a good part of the night was awake every 15 minutes or so. Then on Friday, he couldn't eat since he needed anesthesia for the MRI, so he was very unhappy all morning. After he wore himself out crying because I couldn't feed him, we both fell asleep for a while before it was time to leave for the hospital.

The MRI was scheduled for 1:00 pm. Luckily things were running on time. I signed the usual consent forms, and then stayed with him until they sedated him. Luckily the sedation was painless for him; since he has the Broviac, they just injected Propofol into it, and he fell asleep instantly. The sight of him suddenly going limp and lifeless looking, and then being carried away, always upsets me.

Two hours later, when the scan was over, they brought me to where he was waking up. He woke up pretty quickly and in a good mood, and happily ate a popsicle. We waited for his oncologist to come down and tell us the results, but she was tied up and Collin ran out of patience. He let us know he was ready to go by screaming and pointing to the door. So we went home and waited for the doctor to call us with the results.

A few hours later, one of the attending oncologists called to let us know the MRI results. He said the MRI looked great. I asked him what that meant, and based on what he described and my understanding of certain terminology, it means:
-The abnormal collection of cerebrospinal fluid that collected under the skin around the incision on the back of his head, called a pseudomeningocele, is much smaller;
-There was an area of blood that had collected in the post surgical bed; the area is smaller now and the blood is being reabsorbed;
-The areas of enhancement, or areas that glowed, on previous MRIs that showed nerve root thickening are glowing less, which means the chemo is working;
-There is no evidence of new tumor growth;
-There are now no visible lesions on the spine.
He said the MRI was looked at and discussed by the pediatric neuroradiologist, Collin's neurosurgeon, and his oncologist, and they were all pleased with the results. The scan isn't perfect yet, but it shows improvement over the last one done in June, and shows we are continuing to head in the right direction. All in all, good news! They had also drawn labs before the MRI, and I was able to get partial results before we left. Collin's white blood cell count had gone from 1.0 on Wednesday to 13.5 on Friday. That meant the Neupogen shots were working, and we didn't have to give them anymore. It also explained why Collin had been so restless and uncomfortable the night before-his bones were achy again since his bone marrow was working hard to make new white blood cells.

Later Friday evening after his bath, Collin's head felt warm, so we took his temperature. It was elevated, so I checked with both of my thermometers. I wanted to make sure it wasn't because of the warm water I had used for his spongebath, and I was so exhausted I felt nauseous, so I asked Bill to wake me in an hour so I could check again, and then I went to sleep. Sure enough, when we checked an hour later, his temperature hadn't changed, so I called and spoke to the doctor on call. He said even though Collin's immune system was boosted, his Broviac had been used for the anesthesia for the MRI, and he didn't feel comfortable having Collin stay home in case he had picked up an infection in the Broviac (any time the line is used, there is the chance that it can become contaminated with something that causes infection, especially if it isn't cleaned properly by the person using the line). So, I packed up the essentials, and Collin and I went back to the hospital at 11:00 pm. We were admitted right next to the room we had just left two days before. Of course by the time we were admitted, Collin had no temp at all (the nurses assured me it happens all the time). The usual cultures and chest X-ray were done to check for infection, and Collin was started back on the two broad-spectrum antibiotics.

All day today, Collin has been fever free, and we spent the day doing our best to keep him entertained. I imagine we will be here anywhere from 36 to 72 hours while we wait to see if the cultures show any specific infection. It is frustrating beyond words to be back so soon, but I know we are where we need to be right now. I just really hope we can go back home very soon!