For those of you who want to know how our appointment went on Wednesday but don’t have Facebook, here is what I posted.
We had an appointment with Mason’s doctor today. While we still don’t have an exact treatment plan, we do have a lot of questions answered. As my wise friend, Amanda Seymour Johnston says, “If you have to have bone cancer, this is the kind to have!” Amanda actually went along to be another set of ears for us and ask all of the questions we wouldn’t know to ask. Considering the fog I’ve found myself in, I’m so grateful. Here’s what we know:
•This type of cancer only metastasizes to the lungs and rarely does.
•No chemotherapy or radiology should be needed!
•The best guess is that the tumor has been in his leg for over a year. If he hadn’t gotten cut over the summer, we wouldn’t have known until he started having pain. At that point, it likely wouldn’t be grade one. Thank you, God, for that interruption.
•Over 90% of patients are completely cured after resection surgery.
•Fibulas are not even necessary bones! They only bear 1/6 of your weight as you walk.
•Surgery #2 will be on the main KU campus in early February and will take the fibula from either his good leg or bad leg to replace the 10 cm section of tibia they remove. Recovery will be a full 6 months and the hospital stay will be longer than last time (3-4 days).
•Toward the end of recovery, PT will be necessary. Follow-up will consist of a CT scan of his chest and plane x-Ray every 4-6 months for 5 years. In years 6-10, he will only go annually. Then, (when he’s 19) he may be able to discontinue follow-up.
•Before surgery, Mason has to visit two new doctors. 1) a vascular orthopedic surgeon, Dr. Tilley, who will be a part of the operating team along with our current doctor, Dr. Rosenthal (orthopedic surgical oncologist) 2) a pediatric oncologist, Dr. Smith. He also has to complete a full body bone scan and chest CT to be certain we are only dealing with one tumor.
•By fall, he should be able to resume all activities and will have grown a whole new healthy bone (plus several screws and plates).
Many of you have asked how Mason is handling this news. I’m proud and embarrassed at the same time to say that he is handling it better than any of the rest of us. He has continued to amaze us with his positive attitude and pure trust in God. He has been able to witness at school through this situation and we have been reminded repeatedly how lucky we are to be his parents.
Again, we are so grateful for your prayers, texts, hugs, phone calls, offers of help, etc. I can honestly say that I’ve never been so scared and sad in my life than I have this last couple of days. While we still have a lengthy journey ahead of us and we are not “out of the woods yet” so to speak, we feel very encouraged by today’s conversation. Please continue to pray and be sure to let us know when you win the lottery tonight. We could use a small percentage of your winnings to pay for this all-star team of doctors!
A big thank you to Lisa Kroge, Mayela Aldrete Esser, and Tammy Burrowfor getting us through today. Both of our co-workers and employers have been very accommodating and in constant prayer with us as well. Without a doubt, God planted us among countless servants and friends. Without you all, I can’t imagine going through this. I apologize to those who got the pleasure of having my snot and tears on their shoulders as well as those who sat and listened to my ugly cry over the phone this week. I hope to never have to repay you, but if necessary, I’m totally up to the task.