Start of Long-Term Maintenance

So today we started something big. Long Term Maintenance! This is what we have been waiting for for 9 months. However, this starts a very very long road, which makes it a bit difficult to wrap our brains around. For the last 9-10 months our family has been running on adrenaline. There was no break or let down from the 9-10 months of active treatment, we just jumped right into “normal” while everything remained abnormal. It’s difficult to explain but the reality it that we both have fulltime jobs, a kindergartener who is just starting and figuring out life, a baby at a new daycare, concert season, work meetings, enough medication to dispense that we might as well be a pharmacy, and a chemo regimen to maintain at a hospital an hour away with no paid leave from work. It’s a circus. 

We started maintenance with an OR day where he got spinal chemo as well as another IV chemo. He also started a round of steroids and 2 oral chemos at home…13 pills people! Sheesh! And 2 liquid suspensions. Our excel spreadsheet for medicine made our heads want to explode. We will get through it and some days, our milk may get put in the pantry or we may accidentally take a shower with our clothes on, but darn it, he will get his medicine! 

So Maintenance will last for 2 ½ years. Until end of October 2021 to be exact. During this time Cooper will receive daily chemo at home in addition to other drugs as well as chemo via IV once a month in the hospital. Every 3 months he will also have an OR day with spinal chemo….only 10 more OR days to go!
Cooper with his Child Life Specialist dropping of some ever popular "Aunt Connie port access shirts" that she graciously makes for the kids at Hopkins. She is amazing, that Aunt Connie!!!

One thing that was SO SAD about starting maintenance is that Cooper's nurse Jill who has been with us through everything was moving to the PACU. She has been the biggest sense of stability and is basically like family. Cooper just adores her, so we are so sad to see her go, but she got us through the tough stuff and for that we are eternally grateful. She took such good care of us and our boy and was SUCH a big part of this journey. 

 Cooper and Jill


The Sunday after we started Maintenance we were finally able to take the kids to the gym so Cooper could say hi to our combat family. They were SOOOO excited to see him and see how good he looked and they always continue to cheer us on!

It is definitely different and has its own challenges but we are certainly thankful to be where we are and for now, it’s a really good place to be. 

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