Bonus “Normal” Day!

The past couple of days I have been reminded of why started this blog! It’s overwhelming how many people care and want to know how to pray for Mason and our family. We are so grateful. The past few days have been extremely busy as far as his care is concerned. One thing that remains consistent on the medical end of all of this is that each and every day brings new confusion and new decisions. We can’t possibly think that we have a solid plan down without it changing.

On Friday morning, we went in for the needle biopsy of the biggest of the three tumors in his upper femur. At one point we had just planned to be there for the day, then they changed it to an overnight stay, then they said we may have to wait to go home until Sunday. We ended up getting to leave Saturday around noon. Mason handled the biopsy so well that we were all amazed. They took 12 good samples and feel confident that they got enough that an open biopsy will not be necessary. He had no pain at all from this! Immediately following the biopsy, under the same anesthesia, they placed his double lumen Hickman catheter. This area is still tender and it’s so hard for us to see him with these tubes coming out of his chest. But, all has gone as well as can be expected. I’ve learned to do the daily flushing needed and Mason doesn’t complain. Our current battle is the fact that we’ve discovered Mason is allergic to tegaderm. This is what would normally be used in the catheter dressing as well as covering it for showering. We’ve had to get creative and haven’t had much help at all from home health or the hospital. There just aren’t a lot of options. We’ve ordered something that may solve our problem, but of course it’s pricey. Showering in general is a huge chore at this point. We must make sure this area stays completely dry while also scrubbing his body with liquid dial and then surgical scrub has to sit on his entire body for 5 minutes to kill any remaining bacteria. He then has to use a special lotion. I know we’ll get used to this new daily chore, but we all dread shower time at this point!

Up until yesterday afternoon we had been told that Mason’s chemo would start this morning. However, a phone call from his oncologist revealed that while the KU pathologist still thinks were dealing with high-grade osteosarcoma in his femur, they want to be very sure before starting chemo. So, Mason’s slides were overnighted via FedEx and should arrive in Miami at 10 am today. The same doctor who gave us our original diagnosis of his tibia will be reviewing his entire case again. Last time we waited a full month for these results. This time they say it is high enough priority that they expect a turnaround in less than a day. Mason’s oncologist said the soonest we would start chemo would be tomorrow morning and he expects that to be the case. Obviously, we don’t want to start pumping poison into his body unless we absolutely have to. We get the feeling that all of the doctors are still very perplexed at the way that Mason’s cancer is presenting.  Pray for miracles!  Pray that it doesn’t make sense because nothing that our good God does makes sense to humankind.

So, we ended up with a bonus “normal” day! Mason got to go to school this morning and he even walked (limped) in crutch-free! And now, as usual, we wait.