I Have Nothing Nice to Say

Lyla had an MRI yesterday as part of her routine followup. We hoped there would be no change, but got nervous when she was in the machine for 3 hours -- a lot longer than usual. She won bingo twice and the grand prize coverall while in the MRI machine and did a great job waking up from anesthesia and didn't even need her bipap mask. She woke up, got a drink and we were on our way to the clinic.

We missed our appointment since the scan took so long, but we got a room when we got to
Minneapolis and Dr. Bendel came in to see us after finishing with another patient and talking with the St. Paul radiologist. She asked how Lyla was doing and reviewed the notes she got from Sarah re: PM&R. Then she told us that Lyla had a change on her scan and that after consulting with radiology and another oncologist, they thought it was important to address it right away. The small crescent of tissue we have been watching for months now has started to widen (as you can see above), and while it is small, there is no time to wait, especially given where it's located, the potential for damage if it continues to grow and Lyla's history of fast growth.

Lyla will have a new port placed sometime the week of August 5 and will get her first dose of a new kind of chemotherapy the same day. The new treatment will be a year long and will hopefully shut off or shrink the tumor. The new drug -- called Vinblastine -- is a derivative of Vincristine (that she had last time) and has the best ratio of efficacy to risks and side effects. She said the most common symptom is low counts, but they have a higher threshold with this treatment, so they will not give it to her if the numbers are too low. It is only a slow push, so she will not have to spend hours and hours at the clinic each week and could even get the treatment through home care if we wanted (we chose the clinic). Side effects are mild nausea, some nerve pain and possible hair loss. Foot drop is in the mix too, so we'll have to coordinate with Sarah to see how that will impact her PM&R goals.

We're still learning what all this will mean. We stopped over and shared the news with mom and dad last night. We had arby's for dinner, then they took Lyla to hallmark and bought her the "stuffie" she's been wanting while Masud and I talked, called Ryan and drove to meet them.

So much for a chemo free 2013.