Super Hero Cooper

Today was a big day for Cooper!  Today he successful met levels to complete his Ph II of his chemotherapy and move to his first "maintenance".  This is a big day for a few reasons.  First, it means another major phase of his treatment is behind us and we are nearly half-way through active therapy.  Also, the real end of his treatment (removal of the port) is based on D1 of Interim Maintenance I - today.  This means that Oct 29, 2021 will be Cooper's last day of leukemia therapy!  As we have said, this is a long road and it's discouraging to think about how long the road is ahead, but it's important to that that his "active" therapy is much shorter. To celebrate, Cooper gets a small "party" where he gets to pick his dinner and desert. He really wanted a few of our neighbors to come over to celebrate with his Harry Potter themed dinner since they have helped us so much. He was super excited that his buddy Brett (the teenage boy next door, who

Well this week was just YUCK! We have had a bit of a time the last week or so. We were really looking to have 14 days off from the hospital, but that ended up being a no go. For starters our water treatment system needed to be replaced for our well water. Let me tell you, no water, or laundry for a week with a newborn and a kid that is throwing up regularly is a special kind of hell. We survived without throwing our clothes away and by using lots of paper plates, which was a positive. We will have to reduce, reuse, and recycle at a later date in life. See our sense of humor here? We haven't lost it completely, because some days if you don't laugh, you'll cry. Cooper has had some rough side effects from all of the lumbar punctures combined with the oral chemo and his other meds, all which have a top side effect of nausea. So, yep...Every. Single. Day...poor little dude is getting sick. Friday afternoon, we still couldn't get the nausea under control and Coop spiked

There are many things that happened these past 2 weeks that prompted me to write this. I think from an outsider looking in, you don’t get a clear picture of how things are really going. Much of the time, everything looks like it’s going ok, because that’s what cancer parents do. Everything we focus on, everything we post, everything we say to everyone else is the positive. If you don’t constantly focus on the positive, this will take you under and you will drown. However, inside these walls, there’s a lot people don’t see and a lot people don’t understand. Going through this process, there are things that Jason and I hear a lot from friends and family. Things like… “Kids are so resilient.” “Everything will be okay.” “I can’t imagine what you’re going through.” “All of this is part of God’s plan.” And then there’s this…. “You are so strong, I don’t know how you are doing this.” So I want to start with a story. The night before we were admitted to JH with Cooper’s

We reached our last treatment of consolidation. Woo hoo!!!! We still have 10 days left in this cycle, but no more hospital visits, so that is a huge win. Thanks to Cooper's awesome blood counts he had 14 days off of hospital visits until we start Interim Maintenance I. This is by far the biggest break he has had from the hospital in 2 months. All in all Cooper has felt pretty good this cycle. However, that is in comparison to the first 29 days, which were an absolute nightmare. This cycle, the hardest thing was the fact that Cooper had to go under anesthesia and have a spinal tap every single week. That's hard on his little body. Also, when they go under that frequently, they start to build up a tolerance to the anesthetic drugs, making it more difficult for them to wake. Every treatment day of the cycle started at 5:00am with us driving the hour and a half to the hospital, with poor Coop getting sick most of the way there. No eating on anesthesia days and oral chemo is a yuck

We decided that with Cooper's ANC sitting at 4,000 we would go out an do some fun fall stuff. You never know when those numbers are going to drop, so you have to get in some fun while you can! Obviously, still with precautions and pretty much uncrowded outdoor activities, but Fall is perfect for that. We headed to Lawyer's Farm on a Friday afternoon for a corn maze and some fall fun.  Apple Cannons!!!  Zip line!!! Cooper and I also decided to check out a new place called Sunflowers of Lisbon by my school. It was a perfect outing and we even got some ice cream at Alex's and we got to see some of my friends from school in the parking lot:)  Cooper ordered a Sunflower with "no bees please!"  Cooper also decided he wanted to do a paint night with mommy and listen to music and eat snacks. Cooper created a pretty cool masterpiece. I penciled in the outline of the truck, the pumpkin, and the tree but Coop did all of the paining

With the no-go for starting consolidation on Wednesday, Cooper was treated to another 4 days of a drug-free vacation.  Just in case anyone was concerned about his levels being low, neither the doctors nor us were worried.  This is pretty much par for the course where regimens are delayed based on levels.  Coopers ANC was low last week mainly due to the fact that his bone marrow was still recovering from his Induction (first 29 days phase).  The good news is we went back to JH on Monday for them to check levels and potentially start consolidation.  Cooper's levels across the board were nearly entirely recovered!  Hemoglobin, ANC, platelets were all back in line with a normal, healthy 5 year old!  The bad news is that we know these levels will go back down - this is how chemotherapy works unfortunately. With consolidation beginning on Monday, Cooper will have 2 more spinal-infusions over the coming weeks (with many more to come over the next months).  Monday was a bit harder t

On Wednesday we went in to start phase 2. This is a 28 day chemo phase called Consolidation. During this phase he will have a surgical procedure every week to administer chemo into his spine. Nothing he hasn't done before, it's just that it is every week during this phase. The reasoning behind this is that the spinal fluid is where leukemia likes to hide. So, during his day 29 results, no leukemia was detected. However, this does mean that there could be some cells hiding in places. All it takes is one, so that is the reasoning behind 6 months of chemo AFTER the leukemia is "gone". During these phases they will be targeting different areas with different drugs to get any and all leukemia that may be hiding in his body. Unfortunately on Wednesday it was a no go. To start a new chemo cycle, your ANC level has to be at 710. Coop was at 320 and his hemoglobin was low as well. This would explain his low energy...ha ha! And here I thought he was low energy because he had

Drug free, hospital free week was awesome!!!! It almost felt normal. No more PICC lines to flush and no more steroids!!!!! Cooper is still coming down off the steroids...and so are his chubby little cheeks. Everyday he is looking and acting a little more like our Cooper. We got to enjoy some sunshine and get outside. Cooper is still low on energy since his surgery, but hey, he's our playing croquet. We would be laid out on the couch if it were us. He is such a champ.  We had our family meeting with the doctors to look at the rest of his treatment. Wow...that's one overwhelming situation. We will be finished with this mess October 2021. That feels like an eternity! His active treatment will be complete in April 2019. The doctors were extremely pleased with his day 29 results and it makes the chemo course over the next 6 months a little more bearable. Due to the favorable results he gets 2 interim maintenance phases, which should be easier phases. We have one really ugly