Today is a bag of mixed emotions, a day I’ve been dreading yet looking forward to at the same time. January 11th will forever be remembered in our family. Even Mason mentioned on the way to school this morning, “Today is the day I was diagnosed.” Today my heart feels very fragile. I may burst into tears with absolutely no warning. Or, I may laugh until it hurts. Maybe we should stop and pray for every single person I may encounter today!
We have so much to celebrate today. The fact that we have a happy, healthy boy today is nothing short of a miracle. Three diagnosis later, we can fairly safely say Mason will not need to be inpatient or undergo any more chemo in the near future. Our family is in tact and stronger than we started. We saw God move repeatedly over this past year. There is still so much confusion over Mason’s case, medically. But, I can’t shake the fact that hundreds of people praying for God to do mighty things isn’t the cause of this confusion. I’m ok with not understanding fully, but knowing that God does – most of the time.
Squeeze your people tightly today. Thank you for your prayers that have gotten us here. A full year later, we still have our boy.
As we say goodbye to 2016, it’s easy to say good riddance to the hardest year of our lives. We are forever changed from what we’ve been through this year. In just a few days, the anniversary of Mason’s cancer diagnosis will hit. But, we waited a very long time for that original diagnosis as the scare really came a full year and a half ago. A large part of the past year and a half has been waiting. If I counted the days we spent waiting, I’m sure it would make me sick! Just this week we ended the most recent wait as the preliminary results to our 3rd opinion from Mayo finally came in. We have yet to see the written report, but Mayo has finally weighed in via phone to our team at KU. The news we received was not surprising. “This is a one of a kind case that made for a very difficult diagnosis.” (Yep, that’s our boy. 🙄Keep talking.) In a nutshell, they are basing their diagnosis mostly on the genomic profiling that we had done in New York. And because of this, they agree with the doctors at Memorial Sloan Kettering. However, they do admit that no diagnosis is a perfect fit. And, everyone agrees that pathologically Osteosarcoma and Fibrous Dysplasia look almost identical. To recap:
Diagnosis #1 in January 2016 – Osteosarcoma
Diagnosis #2 in September 2016 – Fibrous Dysplasia
Diagnosis #3 in December 2016 – Fibrous Dysplasia
We can look at this as a tie breaker and go with the less evil diagnosis and continue to monitor with less frequent scans. The scariest part of this diagnosis is that Fibrous Dysplasia can actually turn into Osteosarcoma. Or, we can look at this as we have been since January. Dr. Rosenthal has said from the very beginning you could give him 5 different diagnosis and he would 1) treat the most aggressive one and 2) trust our first pathologist over anyone else because he’s ranked #1 for a reason. The fact remains that we have already treated the most aggressive diagnosis. So, again, we just need to decide how often to scan and what kind of scans to do that aren’t adding more risk than necessary. Exposing Mason to radiation of many of the scan options repeatedly can also give him cancer.
As I’ve said before, it’s really hard to sit and wish we hadn’t treated Mason so aggressively as we watch him struggle to be a normal little boy who can run and play like his friends. And, I’m convinced that knowing what we knew at the time, we would have never made a less aggressive decision than we made. We were seriously terrified of losing our little boy and his tumors appeared to be getting more active and larger quickly. As much as I wish we had not done chemo or most of the surgeries, all causing us to spend a good part of the year living in the hospital, we had to do what the medical experts advised. We trusted them, and honestly, we still do. It’s called the practice of medicine for a reason. There is much more gray area than black and white.
We will head into 2017 focused on being wise and vigilant with Mason’s care. We will continue physical therapy as long as it takes until he is running again. We will demand open lines of communication with his medical team. We will make a commitment to never being the same family we were before “cancer” hit. We will constantly remind each other of our priorities in life. We will love each other better. We will learn from all of the people God has placed around us this year and hope to help as many as have helped us. We will praise God for all the gifts he’s shown to us along the way in this hardest year of our lives. We will thank him for two beautiful, happy, healthy children who we have the privilege of raising. Here’s to a much better 2017!