Updated: Aug 23, 2019
After returning home last Wednesday (8/14), we've had a bit of a roller coaster of a week. Lots of ups and downs. While the MRI showed the chemo was working, it also showed significant swelling in his ventricles...close to levels when he was originally diagnosed in early June. They changed his shunt settings, but we were going to have to wait a week to see if there was any progress with a fast MRI. Event though we were not in-patient, Cameron had to come to the hospital 5 of the 7 days for appointments, apheresis, and a trip to the ER.
On Saturday Cameron was having severe headaches - a symptom from the hydrocephalus so we had to bring him to the ER. He had a fast-MRI which showed little to no reduction of his ventricles. The neuro-surgeon performed a shunt tap (poking a needle into the back of his head to penetrate the shunt to draw CSF), which was successful, so it seemed that there could be blockage or other issues somewhere else in the shunt. The neuro-surgeon re-calibrated the shunt and we were released home and set to meet with the attending neuro-surgeon on Monday. If there was an issue with the shunt, they would have to perform surgery on Cameron before his next cycle (Tough News #1). Tough because any surgery would delay chemo treatment by at least a week.
On the way home, we received a call from the BMT team that the labs that were run at the ER seemed to suggest that we may have lost our window for stem cell collection. Cam's counts shot through the roof which was great. The issue is that BMT tries to collect stem cells during that ramp, and they do not perform collection on the weekends. We were to wait until Monday to figure out what would be the best path forward. (Tough News #2). This was tough because BMT usually does not collect after the 3rd cycle since he will be getting ready for his last 3 rounds which has chemo so strong that he needs the stem cells to recover in time for the next cycle.
Cameron had a great day on Sunday. He played with his brothers most of the day and seemed to have a lot more energy than he did on Saturday. He went to the park and made a fort with Harper in the living room.
On Monday, we met with neuro-surgery. They wanted to wait until his MRI on Wednesday before making any decision since Cameron's symptoms did not seem to be getting worse. The BMT team also decided to push forward with collection on Tuesday given Cameron's counts on Monday. His counts were so high they thought they could still have a window, in fact they thought they would be able to collect it out-patient in the infusion center -- crisis averted.
On Tuesday, Cameron was hooked up to the apheresis machine and had his stem cells collected throughout the day. Because his counts had already peaked, they were only able to get 70% of what they needed...he had to come back for a second collection day (good news is that he got to go home and sleep in his bed).
On Wednesday, he was back on the apheresis machine, and since they wanted to make sure they collected everything they needed, he was unable to make his MRI. After apheresis, he was then admitted so that they could run the MRI that evening to determine if he would need surgery on his shunt on Thursday morning. He did not get into the MRI until 9pm and we waited impatiently until 10:30pm for the results to be reviewed. The neuro-surgical fellow reviewed the results with us which were great. The CSF in his ventricles decreased significantly and he no longer needed surgery. Another crisis averted.
We were set to begin chemo on Thursday night / Friday morning!