I just got off the phone with Dr. Smith, Mason’s oncologist. This is the fourth conversation I have had with Dr. Smith in the past 24 hours. The 3 previous conversations have basically told us nothing – “just checking in to let you know that I still haven’t heard and am waiting and anxious just like you” kind of conversations. This morning when he called, Dr. Smith had just ended a half-hour phone conversation with Dr. Rosenberg, the pathologist in Miami that we’ve been waiting on.
I can’t possibly describe to you the confusion that I feel after these conversations. I try to read between the lines and get a feel for what the doctors are not saying that I should be hearing. I feel like Dr. Smith was pleased by what he was telling me. But, I also feel like everyone involved is more perplexed than ever.
Here is what I heard in our brief conversation:
- Given the age of your son and knowing that the diagnosis of the areas in his femur will set chemo into action, as it should, Dr. Rosenberg wants to be 100% sure that what he is seeing requires chemo. Chemo is never a decision made lightly. (Thank you, God.)
- Dr. Rosenberg wants to do the same type of testing on the femur samples that he did on the tibia. This takes several days. He hopes to be done by WEDNESDAY of next week. ?!?!?!?!? (I want to scream!)
- Dr. Rosenberg needs the actual film from the PET scan. We’ll send it today and he should have it by Monday. (No problem, really. The PET scan was done OVER TWO WEEKS AGO!!!)
- I’ll be in touch. Have a good weekend.
- Me: “Wait! Are you surprised by this? Do you agree with waiting? What about the part where you told me the tumors appear to be growing everyday? Are you sure we should wait?!”
- Again, this type of intramedullary tumor is not supposed to spread to another bone. We are all alarmed by what we are seeing and want be completely sure that this is what it appears to be before we start chemo. (Thank you, I think. The concern in your voice is killing me. No one really knows what we are dealing with here.)
I’m confused, terrified, and a tiny bit excited by this. This is the first conversation in a long time where it sounds like chemo may not be in our future. I regret pushing so hard to do what I felt was best for Mason. They wanted to wait to put his Hickman catheter in until this past Monday and start chemo on Tuesday. That was the firm plan. I don’t know how many times we discussed starting chemo at 9 am on Tuesday morning and here it is Friday and we are being told we won’t do anything until at least Wednesday. I pushed because I was told that a 9-year-old going under anesthesia 3 times in a week’s time was not good. I pushed because I hate seeing my baby go under. I pushed because I really thought I was doing what was best to get both procedures done at once. And now, I wish I hadn’t. He wouldn’t have tubes coming out of his chest and I wouldn’t be pumping 4 syringes full into him each day . And we wouldn’t be struggling through covering these tubes for daily showering since he’s allergic to everything that is made for covering them. I hate regret.
And, I hate the worry in all of this. We were just told that in 8 days time, the tumors in his femur appear to have gotten worse. We were told that these are at least a grade 2 and that they are clearly metastasizing. We were told that waiting would definitely result in the cancer moving into his lungs. It feels like a ticking time bomb. It feels like something we should be acting on, not waiting on. We know at this point we either wait on the doctors that we trust or we try to take matters into our own hands and go elsewhere. We know that by doing so would likely result in even more waiting because they don’t know our son’s case and would have a lot of studying to do before making any decisions. We do know that if our doctors don’t feel like they can get a handle on what they are dealing with, we have asked that they sooner, not later, send us on. So, waiting is really our only option.
The good news is we now have a weekend that will not include a hospital. And, even though it’s so windy we’ve literally lost our recycle bins and our house is shaking so much it feels like it’s going to blow over, the temps for the weekend are warm for February. Because our move is about 30 days away, we should probably start packing. Maybe that’ll keep us busy enough to not be paralyzed with worry.
Maybe, just maybe, God is working His miracle right now. Maybe our future will not include a year of chemotherapy. Maybe we will not have to learn what it is like to live part-time in a hospital. Maybe we will not have to learn how to parent two precious children from two locations. Pray for that.