Last night at Wellness House, Matt Brown and I had the incredible honor of introducing Dr. Jim Olson, a physician-scientist from Seattle Children’s whose work has been a guiding light for our family for over two years. His innovations—from Tumor Paint to Project Violet—have not only advanced pediatric brain cancer research, but have also modeled what it means to connect institutions, share data, and put…
Matt Brown and I got the results! —and we’re breathing a little easier. No progression. That’s the best news we could have hoped for today. These moments of relief mean everything, and we just wanted to share it with all of you who’ve been walking this road with us. Check out the photo of Alexander in the mask, strapped to the MRI machine. He’s getting…
Another trip to St. Jude, another scan, and another overwhelming sense of relief! We have had so much going on–busy at work, end of school, planning for summer–that we have not talked about or dwelt as much on this scan, but the stress was still overwhelming. We expected a call from the MRI staff when Alexander was done with his scan and moving on to…
Not only did we get on the news in Chicago; WDEF News 12 in Chattanooga covered our story too! Thanks to Kay Blevins for highlighting Alexander and our whole family and bringing awareness to the Chattanooga area! Thanks also to Congressman Chuck Fleischmann for helping to lead the fight against childhood cancer and supporting the Give Kids a Chance Act! Watch the video here: https://www.wdef.com/hope-for-alexander-a-familys-mission-to-change-childhood-cancer-treatment/
We had very acute scanxiety leading up to this scan, both Christy and I. We aren’t sure why–Alexander is doing wonderfully well. His energy is up, school is going great, and he gets stronger and more capable (and more vocabularific!) all the time. There’s no good reason for us to think anything was wrong, but we both felt pessimistic. When your whole life comes down…
Scans show no progression! We just had our brain tumor clinic visit to review his full brain and spine MRI and lumbar puncture results from yesterday. We could not feel more relief to have another 3 months to breathe. We met with the genetic counselor for the first (and probably the only) time. 123 genes were tested, and none of them showed any increased risk…
Scans show no progression of disease! After the nightmare of May and the extreme uncertainty of June, we are so glad to have the diagnosis confirmed. As we always say, this is not the end of anything; it’s just one step along the way. But these are the steps we are so, so happy to take. We are still making our way through the post…
We haven’t posted in far too long. We have been focused on the moment and enjoying a wonderful summer filled with travel, experiences, and love. We’ll post more about those experiences in another post, but for now, let us say a huge thank you to Veronika and Bear Necessities and to Karen, Danielle, Emily, Emily, and others at Make-A-Wish. Now it’s back to real life….
One year ago today, our lives changed forever. On June 4, 2023, our perfect, beautiful son was diagnosed with aggressive brain cancer, evidenced by a golf ball-sized tumor in his cerebellum. Three of the attached photos are from that horrific day. Today, we got the best news we can get: his scan from yesterday shows no disease progression! As always, we have to remind ourselves…
Today is our regularly scheduled quarterly scan. We would be very stressed out anyway, but after our experience three weeks ago, our anxiety is through the roof. Even if we are told this scan does not show disease, we will never again be fully able to trust that news. We are awaiting results and will post an update when they come. Alexander is still doing…
