We can’t help but be frustrated. We have spent the last month trying to get the next surgery date planned. We know that if the trend has continued, the 3 remaining tumors are likely growing as we wait for a plan. I started off slow and patient, showing as much possible respect as I could to the doctors and their teams and the process itself. In the past week, I have felt I had no choice but to keep calling daily. Communication amongst all of Mason’s doctors continues to be the hardest part to navigate as his parents. I’ve lost count of the number of phone calls that I’ve had with doctors, nurse practitioners, nurses, and their receptionists. And, while I feel that all of these people are excellent in their fields, they are still not working as a team and I am still their go-between. Basically, our surgical team and our oncology team were completely on different pages and I had to let them each know this. Oncology wanted surgery ASAP and surgery thought oncology wanted 2 more rounds of chemo first. The problem with that is now we are stuck waiting even longer because operating room schedules fill up fast and again we are in need of a time slot that 2 different surgeons can be available on the same campus. Even though I had conversations in person with 2 of the doctors today and the other doctor’s nurse via phone, we still don’t have a solid surgery date, not to mention surgical plan.
Today was the start of chemo again after our 2 1/2 weeks of wonderful time at home. It was hard, to say the least, for any of us to walk into that hospital today. For the first time ever, Mason was actually pretty sad and angry that he has to be there. He even complained that the hospital doesn’t smell like home. Poor kid. I would love to have a pity party with him and be sad and angry too, but Matt and I tried our best to occupy his time with as much laughter as possible. Even with his favorite nurse there today, he was just not happy to be there. Who could possibly blame him at this point? Not being able to swim, much less walk, doesn’t make for a very fun summer. And, it doesn’t help that everyone keeps asking him if he has big summer plans. Ummm, NO! Unless you count living in a hospital with poison being pumped into you along with more pain and surgeries “big summer plans.”
So, while we were already frustrated going into today and working hard to make Mason’s day the best it could be, we were hit with more bad news. Today’s x-Rays revealed that the screws that secure the carbon fiber plate to his tibia have already worked their way loose. This would explain why physical therapy is excruciating for him and it’s likely that the exercises we have had to force him to do have worked the screws out. Now, not only can he not do PT, but he has to be fitted for a splint, AND he has to be cut back open again to remove the carbon fiber plate and replace it with a metal plate that can be better formed to his bone. However, we will no longer be able to see through the plate for potential tumor regrowth with it being metal. All of the healing that has been done so far will be undone at a time when chemo is already slowing down any healing by killing new cells that are growing. If we hadn’t already started the current round of chemo when this was discovered on the x-Ray, they would have fit him in for surgery today. But, now, we must wait until he recovers from this chemo before he can handle any surgery. Their plan is to do surgery on the femur and the tibia at the same time now, but not until mid to late July. We’re likely looking at another lengthy surgery.
July 11, he will have all scans repeated and this will tell the surgeons what route to take for his femur. He’ll either have an adult prosthetic put in to replace his proximal femur, or (if the chemo has actually shrunk the tumors) he will have a segmental resection done with only a graft and small plate. The magnetic prosthetic that would have been able to grow with him is off the table now. Once it reached production, we found out that the mechanism itself is approximately 7″ and it would be a poor decision to remove this much bone for an approximate 1″ area.
We also found out this week that our favorite oncologist is retiring at the end of the month. He has been such a huge support to us and has walked us through this step by step very patiently from the very beginning. This is the doctor who lets me text him even in the middle of the night if we have concerns. He is the one who sat silently with us as I cried and answered the same questions repeatedly until we could wrap our heads around what we were dealing with. He’s a good man and we are so happy for him, but it really stinks that he’s leaving us now. He has, however, agreed to teach medical students and we are grateful that he will be imparting wisdom from his lifelong work into others who have so much to learn from him.
After spending close to 12 hours at the hospital, I came home tonight so I can work tomorrow. Matt is staying and Mason is in great hands, but I still find it so hard to leave him there. And, he hates it when I have to leave. I’m so grateful that I love my job and that I have the flexibility to only work a couple of days a week. I’m grateful for the distractions it provides and that I can feel useful there. Most of all, I am grateful for the people I work with that provide constant support. But, no matter what, it will just never feel right not being in the hospital when my child is.
If you are reading this, please stop and pray now. Pray for wisdom and communication and scheduling. Pray for strength and positive spirits and the ability to lean on God more than ever.