Tomorrow is the big day, Seth finally begins his treatment!! With everything we’ve been through it didn’t seem like this day would ever come. I really hope I don’t jinx us by saying it out loud and for the world to see. Tomorrow Seth is scheduled to have a bone marrow sample taken in the operating room along with a lumbar puncture (because the brain reservoir isn’t placed yet) to begin the intrathecal chemotherapy and will become inpatient to administer the remainder of his chemotherapy.
We had our pre-op appointment today and we thought for sure they were going to say because of his cough and congestion we had to wait again. Thankfully the anesthesiologist said even though he is coughing and stuffy his lungs sound clear. It also made her feel better that Seth was under anesthesia last week for the flow study before the confirmation of the RSV came back. If it was something like a hernia or more routine procedure they would have postponed but given the circumstances, how long we’ve waited already, and the need to get treatment started we are moving forward.
After pre-op we went for a follow up with Dr. Goumnerova. She said he looks great and will continue to watch the fluid collection that continues to show after the craniotomy. She said it isn’t unusual given the procedure, his age, and where in the brain the procedure was done. We will have a vent check (mini MRI) tomorrow so she can see what’s going on in there and while Seth is admitted over the next 6 weeks we can figure out when it would work to have the reservoir placed. This will at least limit some of the sedations Seth has to have so we are anxious to have this placed when it is safe.
Wish us luck tomorrow and please keep Seth in your thoughts as the regimen he’s about to start is extremely aggressive and takes a toll on the recipient. We’ll keep you updated as we can but the focus will be on Seth and Sadie as we will be separated for some time and then Steve and I will be alternating back and forth who’s in the hospital once Seth gets further into the treatment.