Connor had his CT scan today in Atlanta and it was clear-Thank the Lord, he continues to be NED (no evidence of disease) It is always a day full of anxiety, leading up to and the day of, worrying-always remembering his positive N-MYC gene found in his tumor (meaning the tumor is more aggressive) Sure keeps us on our toes and reminds us how quickly things could change...So little is known about kids with Stage 1 NB who are positive for this gene, that we always feel a huge relief when we get the all clear. Thank you for all the prayers for Connor!
He did great with the contrast at first-it is just such a large amount of REALLY gross liquid for anyone, let alone a 2 yr. old, to consume. We played a game of feeding it to his pals Mickey, Elmo, and of course Mama and Dada, lol-it worked for a bit...until the nurses came in with the SECOND cup for him to begin drinking and all kinds of scary looking equipment that he just knew was meant for him. Poor sweet boy-he was doing so well until then...after that, he was hell bent on getting out of there and NOTHING was going to console him until he got his wish (MUCH later)
For some reason the radiologist decided it would be okay to use his port instead of an IV for the contrast, which needed to be injected just prior to the scan. This put us in an odd predicament...We certainly did not WANT him to have to have an IV, but in the past we have been told the contrast could cause problems with his port and we do not want that to happen under any circumstances...that could mean surgery to replace the one he has if his starts to act up. It took a lot of reassurance for us to say, "Go ahead and use the port" They say now that he is older it is alright to do-pray they are right about that! LOL So good news, no IV today...he was accessed and we took him to the scan room where they had to use an insane amount of anesthesia to knock him out-he is a fighter right up to the last second-half sedated and STILL twisting and turning and moaning, "Baaah..." for his beloved bottle he hadn't been able to have at all, since he needed to be NPO all day for the scan...We hovered over him, soothing him until he was out, and then watched as the scan was performed. As hard as it is to see him crying and upset-it seems even harder to see him like this :(
Once the scan was done we had a quick lunch and headed to the Aflac Cancer Center, where we assumed he would be beginning his Rituximab treatment today. As we waited-it was getting later and later, too late to start ANY infusion, much less the Rituximab, which last time required some stopping and starting, and slowing down the infusion rate based on his reaction to the drugs (hives, BP issues, etc) We hoped to at least get his IVIG in-but no time for that either...he ended up getting his monthly antibiotic infusion-so it wasn't a complete waste of time being there-or waste of already being accessed for the day, lol.
The next four Fridays (starting this week) we will be in Atlanta doing the Rituximab treatments. His IVIG is pending (we got approved by our insurance for 6 hours a month of home infusion services) and hope to get it done at home for the first time next week. This will be a huge blessing! No shuffling kids around for the day, or night before, or traveling back in forth for this infusion. The doctor still wants to see Connor every 4 weeks, but it is much more do-able to go for just an office visit.
So that is the latest...A huge thank you to Aunt Laurie for keeping Ryan, Stacy, and Samantha and taking such good care of them while we were gone-even taking Sami to ballet class, lol. And to Aunt Kristi for helping with Samantha getting back and forth to school AND cooking dinner for the kiddos too :-) And to Nini for picking Ry and Stacy up from school. We couldn't do it without you guys and love you sooo much!
Deb
