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. 

Comments

Post a Comment

Popular posts from this blog

Beginning of the Road

18 Aug 2018 So it begins... There are certain days in your life that you will always remember - wedding day, birth of a child, the day you bought your first home, graduations - you get the idea. Unfortunately not all these dates are remembered for a positive reason... It is with absolute heartbreak that Kristy and I want to let our family, friends and loved ones know that on Aug 18 2018, our son, Cooper was diagnosed with child leukemia.  I cannot put into words how we are feeling or even if we have fully comprehended what this means for us as a family.  As most of you readers probably know, Kristy and I were blessed to welcome Evyn Wylde Trueblood into the word on 15 Jul 2018. So adjusting our lives to a newborn and a family of 4, to now have this news is more than we ever thought we would be able to handle. I am opening this page mainly for three reasons.  First and foremost to remember Cooper in your thoughts and prayers.  Our God is the creator, great healer and more impo
Read more

Snacks, Hair, and a Dose of 5 Year Old Perspective

Everyone thinks their own kids are the best. That's every parent's right as their guardian.  We are obviously bias but we can't help but look at our kid in absolute awe with how he is dealing with this situation. Nothing like your 5 year old setting the record straight with a bunch of grownups who feel like they're trying to get their act together. From the beginning we have done our best to be completely honest with Cooper about what is happening to him. Granted, this is a tall order to try to make sure to explain a life threatening disease in a developmentally appropriate way. Those of you who know Cooper well, know that he is a very literal kid, a straight shooter. You'd better be honest with him or he will be the first one to call your bluff if you aren't. It is this wonderful quality that Cooper has that will most likely earn all of his classroom teachers a nice bottle of merlot for Christmas. Cooper is also a very observant kiddo, he's a watcher...he
Read more

Last big intensification push: It has begun

Image
So on Friday we did not make counts to start the second part of intensification, so we went in Wednesday and Coop made counts like a boss! It was such a long clinic day, but we were thankful to go home. We were the first ones there and the last ones to leave. We barely got out before they would have had to admit us to inpatient. Luckily this week, Kristy was able to attend clinic with Coop too. Last week she was getting over the shingles and couldn't go to clinic as a precaution to the other patients there. Good old stress induced shingles...Ugh....just what every parent with a baby and an immunocompromised kid needs, right?  Cooper actually got out on his bike during the few days we had after he didn't make counts. We figured if he was asking to go outside, he was feeling much better and we had a pretty good feeling he would get going on Wednesday.  Cooper had the choice to leave clinic and keep his port accessed at home for the home care nurse to come out and admin
Read more