Eli's MRI today went well. He did very well and was feeling great this evening, albeit a bit groggy. He was very brave, although it was very hard for him not to eat until 1:30 in the afternoon. He's normally had about 3 meals by then so it was quite a hard thing to do. It was yet another long and stressful day at the hospital. The MRI was so long that he had to be anesthetized for it; it's always hard for us to watch him be put under and sit in the waiting room, waiting, waiting. At least today it wasn't waiting for a surgery; he was in much better shape after this.
The scan today was twofold in purpose 1. to determine what effect the bleomycin treatments are having on his tumor and 2. to visualize growths under the skin on his leg and back that we have wondered about for a while now, but were not particularly concerning before his craniopharyngioma diagnosis. No one is really worried about them but we thought they should get checked out and depending on how they look, maybe biopsy them.
The MRI results show little to no change in the tumor, which is not unexpected. No one expects the tumor to be gone already (although it would have been nice); the average number of bleomycin treatments is 3. As we progress further into the treatments and the wall of the tumor becomes less and less strong, we will get more aggressive with the draining of the cyst in hopes of collapsing it in on itself. Based on what we saw today we are going to start with another 3 week round of bleomycin in 2 weeks and get another MRI in about 6 weeks. We are hopeful and are trying to be patient, we know this is going to take a while but sometimes all the waiting is hard. I understand why people opt for surgery to get it out right then and there, at least then it's not so unknown. The neuro-oncologist is going to consult another doc about the growths, they don't look scary based on the MRI, but he doesn't know what they are.
As for Eli's general health and well being, he is doing amazingly well. He is headed back to school on wednesday, hopefully that won't be too hard on him. I know he will like being back in school, especially now that he is feeling so much better, but it will be a hard adjustment. It is good for him too, he loves other kids and the singing and art. He will also benefit from the physical challenges posed by school; they will help him to catch up to his peers in terms of the gross motor delays he has from the hydrocephalus. The doctors all say he will be just fine in terms of motor development, he just needs some time and extra help to catch up. Eli has had a good month, he has really blossomed in terms of movement and strength. He loves to jump on his trampoline, do headstands (with his feet still on the ground) and he is almost to the point where he can run and go up and down stairs on his own. These are all major feats where he had made little to no progress in the last year.
We have finally been able to have some quality time together as a family and that has gone very far in terms of keeping our spirits high. We took a mini vacation, just the 3 of us, to Manitou springs and had a great time. We went to the Cheyenne Mt zoo, cave of the winds and garden of the gods. Eli had a great time just hanging out with his Mommy and Daddy (we probably could have been anywhere) and so did we! This trip has inspired us to use some frequent flyer miles that are going to expire and take a trip to Hawaii!! We booked tickets to the big island for June - it cost us $22; now we have to figure out how to get a place to stay for that cheap. Any ideas?
