Friday, January 14 - Day +93

Yesterday Collin had his latest MRI. I was worried it would be a rough morning since he wasn't allowed to eat because of the anesthesia (lately he's been eating like he's making up for lost time) but luckily he handled it pretty well. The MRI was scheduled for 10:00 am, which was also helpful (and certainly better than being scheduled for 1:00 pm and having to deny him food for longer). Since his Broviac is no longer there to inject Propofol into, they used gas to put him to sleep. The gas doesn't smell good, and he fights the mask as it is put over his face, but luckily he goes under quickly. Once he was asleep, they inserted an IV and drew blood for labwork, and then took him and placed him in the MRI machine. It took about two and a half hours since they scanned his brain and spine (it amounts to a few hundred images taken) and afterwards, Collin woke up very quickly and calmly. I was not able to get results before we left the hospital, so I figured I would have to wait for them until his clinic appointment this afternoon, and was trying to assume that no news is good news. Then, about 8:30 last night, the phone rang, and it was Collin's oncologist. She said, "You didn't think I'd make to you go to sleep without knowing anything, did you?" She then told me everything was clear! It was the best news we could have hoped for!

Today Collin had appointments with both his oncologist and his neurosurgeon. The neurosurgeon agreed that the MRI was great, and both doctors seemed very pleased with how Collin is doing. What a huge relief! Over the next six months, we will continue to closely monitor the right side of Collin's face; if it doesn't show any improvement by then, we can consult a plastic surgeon to discuss surgery to stretch and re-connect the nerve that controls facial movement. Also over the next six months, Collin will be given maintenance chemo to give him the best chance possible of no relapse. The maintenance chemo will begin Monday, and we will give it orally at home. Three of the drugs are ones that he has had before: Temodar, Cytoxan, and Etoposide. The fourth, Accutane, is new to Collin. During the maintenance chemo, Collin will be seen in the clinic every other week to be monitored, have his blood counts and other labs checked, etc. Hopefully the maintenance chemo won't cause a lot of vomiting, but he will be started back on the anti-emetic Zofran just in case. And hopefully Collin will cooperate with taking the chemo by mouth so we don't have to put the feeding tube back in!

On Wednesday, Collin had his best outpatient speech therapy appointment yet. At first he wasn't too willing to participate and verbalize much, but then something clicked and he started talking more. He participated with such enthusiasm it brought tears to my eyes! He went on to have a great physical therapy session as well, and his PT feels he'll be walking soon!