It is hard to sum up everything that we have been through over the past month.  

As mentioned in his last update, we were hoping the increase in symptoms would die down after we completed 1 of the 2 meds in his chemo cycle.  Unfortunately that was not the case this time.  Max became less and less responsive and his symptoms overall increased greatly.  Hospice told us to have everyone gather around to say their goodbyes as this is what things typically look like prior to passing away.

After consulting with hospice and our oncology (and Max), we made the decision to still try and make his special concert to Rare Americans happen (see previous update for more details).  We had to rent a special van and borrow a different wheelchair to safely get him there but we made it happen.  We were able to do this in part because of donations received here (special van rentals are not cheap!).  We made it a super special night for him where he got to meet the band and buy every piece of "merch" his heart desired.  This pic from the update was from him at the concert.

The teams warned me that once the concert that Max was looking forward to for so long was over, he may take a big nose-dive because they often see people hold on for something specific then once that thing happens, they feel ready to let go.

But in classic Max form, that hasn't been how things have gone.  In light of his symptoms and overall health, we stopped the newer chemo he had been on since December.  This meant he was receiving no medication to control tumor growth.  In the week after stopping meds, we started to see Max become slightly more talkative and interactive.  He still is unable to stand or walk at all.  

As each week has passed, he has continued to hang on and throughout each day we see periods of strength then total exhaustion.  At some points he can't really speak or respond and then other times he is cracking jokes.  We met again with the oncology team and decided to try and add in a very mild chemo that can help with inflammation and keep him more comfortable.  It isn't as strong as the targeted drugs we have done in the past, but it felt like we needed to do SOMETHING.

So now we just continue to live day to day, never quite sure how he will feel when he wakes up.  We are also pushing insurance hard to provide him with a significantly more supportive wheelchair because his currently one is no longer safe due to his inability to hold his body upright.  Thanks to the donations here we have been able to get additional belts to move him safely, better pads and diapers since he can no longer use the bathroom and other things not covered by insurance that greatly improve his quality of life.

Thank you for all your support and we will continue to update.


-Katy,  Max & Family