Super Hero Cooper

Trying to find the words for today is a tough one. We've seen hundreds of people’s pictures of their kids first day of school and their last day and how they have compared the 2 and how much they have grown and changed over the year. We have that picture too, but ours looks very different. Looking at those pictures are heart-wrenching, not only because it isn’t normal, but because of the eyes. The eyes changed. There was a point where there was nothing behind them because of  being weathered by the storm, because of the loss of his innocence, because of the things he has seen and had to do. In that same respect, the progress is beyond words. When Cooper’s first day of school was supposed to be, we were in a hospital still very much unsure about the details of his diagnosis, prognosis, and what this meant for our family as a whole. Since Cooper was supposed to start kindergarten he has changed immensely, some because of progress, but also because of how sick he really was. Wh...

 Cooper's 6th birthday is here! This is a birthday that we were so incredibly happy to see! He has been through so much and in August we didn't know where we would be at this time this year. Sadly we were also incredibly happy to say peace out to year 5. It breaks our heart that Cooper missed year 5 of his life essentially, and so did we, but it was certainly a year that we were ready to say goodbye to, in hoping that things are looking up. Cooper's birthday was during the week and it also happened to match up with when Mimi and Pop had a flight layover returning from London, so they stopped by for an evening to see Cooper on his birthday. We had a nice birthday dinner and a Harry Potter Cake and had a great time.  For Cooper's birthday party, he had a lego themed pool party with some great friends and family. He loved every minute of it, even though it rained. The rain didn't keep the kids from swimming though! He had such a great ...

For Memorial Day weekend we traveled to Waynesboro to see some really close family friends that we hadn't seen since April when Kristy was cut off from traveling when she was pregnant with Evyn. Kristy's parents always have a big picnic for Memorial Day and we haven't been able to attend in over 2 years. It was so good to see everyone who has supported us so much from afar during Cooper's treatment. It was also wonderful for people to finally get to meet Evyn!  We even got to have a little mini birthday celebration for Cooper with some family and friends while we were there. Cooper sure did love his ice cream cake! I was so excited to see my best friend Bekah and her daughter Cora. I haven't seen them in over a year and they have never met Evyn. It was so good to see them and watch Cora and Coop play together.

After Cooper immunoglobulin, a super fun scare and a 103.5 fever with Evyn, and Kristy's concert week. We GOT AWAY!!!! This is the first time we have gone away as a family of 4...EVER. We went to Deep Creek Lake. The Believe in Tomorrow Children's Foundation is a wonderful foundation that we are a part of and they provide respite housing for immediate families only to use in the middle of treatment. We can use any of the vacation houses free of charge every 3 months during treatment. It is so nice to be able to get away and not have to think about the expense, especially since often taking off of work requires time without pay. This foundation does so much to help the kids by providing amazing experiences and family time. It was much needed and much appreciated. Cooper got to do a ropes course, the mountain coaster, mini golf, went hiking, and we also got to hang at the beach for a bit. We had never been to Deep Creek before and it was awes...

First off, apologies if this post is a rant, because quite frankly this past  week and been a mess and it shouldn't have been. The real deal is that what occurred at clinic and with Coop never should have happened or even been a discussion, but it is, because of the measles. A disease that was eradicated and is now growing with a vengeance because of person preference and choices. Now, we don't want to get political, but put any parent that is in that oncology clinic in an argument with an antivax person, and sorry but you will lose. We have more data, more scientific knowledge, and more numbers and blood levels to back up that argument than 90% of the population and the bottom line is that it is scary, it is real, and yes...those people who aren't vaccinated who are impacting HERD immunity ARE affecting our kids not just themselves....but we digress. Long story short, due to patient 0 in MD, there have been exposure issues, let's say...it's much more of a nightma...

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 sus...

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...