Sep 21, 2019 Latest post:
Nov 11, 2019
Hi family! So we created this site after so many of you suggested we do some sort of blog to keep everyone up to date on what’s going on with Ethan. This will be an easier way to keep everyone informed and since it isn’t a social media website that Ethan has access to we can be a little more honest and detailed without upsetting him. First I’d like to thank all of you for the countless prayers and support you have offered. This has been a very difficult year but you all have helped us every step of the way and for that we are eternally grateful. So where do I begin?? Well, at our last Drs appointment at Nicklaus his oncologist gave us the great news that his scans were clear. The medical team came in one by one we all hugged, kissed, and cried tears of joy. They said we were in the clear for the next 3 months. We were celebrating “clear scans” and trying to move past the cancer diagnosis. Ethan was feeling good except for some discomfort in his left hip(they said this may be because he had a growth spurt)and had even started his freshman year in high school (which he loved). Nik was planning his big remission party and we all felt an incredible sense of relief. So what happened?? A few weeks after that appointment we get a call at 3pm on Friday from his head oncologist. Her words sent us back to a familiar nightmare, “I’m so sorry I made a terrible mistake”. She went on to explain that she’s not sure how but she had either mixed or misread his scans. He was not clear and in fact his lungs showed more activity than he had when originally diagnosed. He had more tumors in his lungs and some were very large. She offered little hope and was at a loss for words. We were in shock and Ethan was completely devastated. He kept asking “how could she make a mistake like that?” We had lost all trust in the team at Nicklaus so we decided to move his care to Sylvester Cancer center. They did more scans and found that in addition to the nodules in his lungs he has a very large tumor in his hip. By this time the pain in the hip became unbearable and he had a difficult time walking. We also decided to fly him to MD Anderson for a second opinion and other treatment options. As of now we decided to start treatment immediately at Sylvester so that we don’t waste time. We are hoping to continue the treatment in Houston once we can get his pain under control and he is able to comfortably make the trip. MD Anderson offers the best advancements in treatments and greatest knowledge of this type of cancer. They have an integrated approach to this cancer and really fight to win! They are also up to date with all of the clinical trials and treatments available in the states as well as other countries. There is a clinical trial open in New York’s Sloan Kettering cancer center that they told us about and we may be eligible for so we are looking into that for now. So let’s fast forward to this week. Monday afternoon we had an appointment to see Dr. Trucco at Sylvester to start treatment but his pain was so bad that we decided to take him in the early morning. Traffic was ridiculous and we thought we would never make the drive. 2 police escorts later at 100mph (at least that’s what it felt like!) down i95 and we finally made it. They admitted him right away to Holtz Children’s Hospital and we began chemo that same night. It’s been a struggle this week. His pain has been very difficult to control and his blood counts have been so low he’s needed 2 transfusions. He’s had 5 consecutive days of chemo so far and we are hoping that he will get to go home tomorrow or Monday. He’s been pretty down and it’s been a struggle to get him to eat or just walk a few steps. He loves having visitors although the pain doesn’t let him interact much. I think it just brings him comfort to know he has family and friends close by. Mamaw was here this week and she was amazing! It made him so happy that she was there. I’ll keep you guys posted as often as I can. For now please keep praying and visiting. Together we know we can help Ethan beast this!