Its been a long time since our last check in! We have been surviving quarantine with two kids and working full time, which has had its challenges, but we've had some fun too.  We are still practicing social distancing as we navigate how to re-enter 'normal' life again. Weston has been doing so well and he's growing like crazy..he's almost hit 40lbs!! Tomorrow will mark one year from Weston's first stem cell transplant.  He has come so far since then! 
April 24th was Weston's official last day of treatment and took his last dose of accutane! He only taking one medication currently which is bactrim, an antibiotic weekly.  Otherwise, he is off of EVERYTHING! This was a huge milestone for us! The following week, Weston had his end of treatment scans on April 30th.  The results of those scans were disappointing.  Weston's scans had remained stable from the imaging in January.  This means that there was little to no progress after 3 months of immunotherapy and accutane therapies.  It was hard for us to process these results, especially when we have watched Weston grow and develop so much in the last six months.  It didn't make sense for him to be this healthy and still have this kind of imaging.  After talking with our oncologist, we decided the best course of action was to wait and scan him in six weeks.  This decision was a difficult pill to swallow.  We no longer had the safety net of treatment to prevent any further growth.  In between scans, Weston had two urine tests that can trace neuroblastoma cells..both were negative!! It was some welcome news to hold us over.  After a looooong six week wait, we finally had scans on June 11th.  Our doctor called and told us some confusing news.  On his April scans, Weston had three spots on his head that were still lighting up on the MIBG image.  The June scans show 2 of the 3 spots have resolved and there is only 1 left.  While this is great progress and we are so happy that there was PROGRESS!!...we still have that one little spot to worry about.  We aren't sure what that spot is and we aren't sure if it is necessarily still active cancer cells.  If it is not cancer cells, it could be something called ganglioneuroma which is cancer cells that have matured to essentially become benign.  There are a few ways to test for this. One option is to biopsy the area to determine what it is.  Unfortunately, the tumor is less than a centimeter and it is close to his orbit (eye socket) and could possibly be a difficult area to operate safely.  The other option is to continue to scan and monitor the area.  At this point we are at a little bit of a standstill.  Our oncologist is consulting with doctors during a Tumor Board meeting this week to discuss the possibility of removing Weston's line and monitoring him in a couple of months.  We are hoping to have more answers at the end of the week.  We would love to be able to remove his line and take a little break from cancer life for the summer!! His central line prevents him from water play and swimming! I know he would love to be able to swim and run through the sprinkler...all the fun stuff he's missed out on the last year.   But, as we know this process is a marathon and we need to be patient and do what's right for his health.  
We will be sure to update everyone with next steps! All of your love and prayers have given us the positive results we have seen on this round of scans!!! We are so thankful for all the endless support!