Super Hero Cooper

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 suspens

We remember vividly the day that school started for every other child and seeing all of the happy posts of kids dressed up in their first day of school clothes, holding their cute signs, starting an exciting year fresh off of a warm and happy break. That same day we were on our way to the hospital for Cooper to get his mid induction blood test which would tell us how much leukemia was left in his peripheral blood, and several rounds of chemo. This was a big day for us too, but not for the reasons we thought. The day we thought would be filled with tears of job watching our first child step onto the school bus to start school, instead was filled with an operating room, needles, chemo, tears, and anxiety. This was such a big day in retrospect, as this day would determine whether the induction course of treatment was on track to show no leukemia in his marrow by day 29. This determines the entire course of treatment and whether he is responding to standard of care. HUGE, but cert

In the middle of Cooper's treatment we planned an end of treatment trip for Cooper with very good trip insurance in the event that his treatment got delayed or he got sick. We took the trip over spring break because schools were out and we had no way of knowing if Coop would be in school or not by this point. Also, we had to go when Kristy was off of work since she has no leave left. The trip was just amazing. We missed Evyn so very much. We didn't bring her because Universal is not a great place for a 9 month old and we felt like Cooper deserved our undivided attention somewhere outside of a hospital. It was tough for us because we don't leave out kiddos, even with a sitter for a date night . Evyn did get with Grammy and Grandad while we were gone! Cooper got to ride everything he wanted and we hardly waited in any lines. He LOVED being in Harry Potter world. We also got to see Mimi and Pop and Uncle Wes and Aunt Meredith. Since they all live in Florida, they were able to

 The Easter Bunny came a week early to our house. We planned a trip for Cooper for his end of treatment to Universal Studios. When we planned the trip, we didn't know if Cooper would be in school by then or even done with treatment, so we planned it during his school spring break and also got really good trip insurance. Since we planned it over spring break, this meant that We weren't getting home until late in the evening on Easter Sunday and we wanted the kiddos to celebrate their first Easter together, so the Easter Bunny made a special early appearance this year!

We have been trying to process how exactly to write this post. It comes with a lot of emotions and also a lot of struggles. Today we finished something big. Cooper completed active treatment for leukemia. Today we said goodbye to a lot of meds that make him feel horrible. We said goodbye to 3-5 doses of chemo a week...sometimes more. We said goodbye to being confined within our walls. While we are so happy to have this stage behind us, we did not say goodbye to treatment. For those of you who have been following our story, we mention a lot how leukemia is a little different in that when kids complete "active" treatment, they do not ring the bell and they continue to get IV chemo for the next 2 1/2 years.  That being said, we believed that April 8th, our end game...because in this you can't have a 3 year end game, you will lose it, would bring us relief. We thought that on April 8th we would exhale, rejoice, breathe. We did not. We didn't feel relieved, instead we l

Back in December, the Casey Cares foundation contacted us because a donor saw Cooper's story and wanted to send him to the Washington Capitals game. Unfortunately, we had to decline since we were not at a point where taking Cooper out to a public event was a good idea. After Cooper's 4th treatment of interim maintenance 2 he  was cleared by his docs to go to a game so the foundation was able to give him that opportunity this past week. Cooper had a BLAST!!!!! He got 3 game pucks, one which was given to him by Lars Eller, got to high five The Great 8, and the capitals organization hooked him up with a really cool gift bag with an autographed Oshie bobblehead. It was such an awesome night. Cooper was exhausted and of course fell asleep on the way home!  Getting ready for the game!!!!  Cooper made a really awesome sign for warm-ups and he got a great spot right by the bench. The Capitals loved his sign. Everyone started tweeting Cooper's picture out and we had r