Cincinnati Children's and Two ER Visits

We met with the doctors at Cincinnati Children’s and LOVED. THEM. We all could have cried tears of relief on the way home, and my mom said she had trouble getting to sleep due to being so excited :)

They pretty much ruled out bone cancer, although I’m still having them take one out for pathology just to be 100% sure. Bone cancer just doesn’t present itself in the way these bone lesions are. It would be incredibly incredibly rare for it to show like this. This is potentially GOOD NEWS. Bone cancer, in this many places, popping up this rapidly, is REALLY BAD NEWS. I hope I’m not jumping the gun (because I’m still wary of it) but I’m so grateful for that (potential) news.

We are all leaning towards lymphoma. (Infection is still in the running, but I would be FLOORED if that ended up being the diagnosis. I just don’t expect it al this point.)

The interesting thing we learned yesterday is that this may have been SO HARD to diagnose because I’ve been on prednisone. If any of you are familiar with lymphoma, steroids are using to TREAT lymphoma. Sooooo…. Remember back in May when I ended up in the ER, unable to move because or my joints just locking up? The Cincy docs said that it MAY have been the first sign of lymphoma. And it went away because the ER doc put me on a high dose of prednisone, therefore “curing” my symptoms. It also explains why, for the first couple of CT/PET scans they did at MDAnderson, my lesions did not grow, and actually shrunk in some cases... But then, as I started weaning back off my prednisone, the lesions multiplied, the lymph nodes grew and multiplied, and I felt worse and worse.  Is this the answer? I’m not sure…. But it all makes a lot more sense than what any other has told us thus far!

Cincy’s game plan is to bring this to their next team meeting and present it to see what their colleagues say about it. Guess how big their “team” is? 70+ DOCTORS, FELLOWS, ETC. Can I just tell you how relieved that makes me?? *sigh* :) The doc also said that the team will “appreciate the challenge”. I giggle every time I hear my case referred to as a challenge. :)

Then they hope to start weaning me off the prednisone enough to be able to take a lymph node and some bone lesion and diagnose me without prednisone screwing with the results. Their concerns about this is that 1.) I will have a GVHD flare and 2.) if it is lymphoma, it will go CRAZY.

So now we just wait to see what the team says! We should know by this coming Wednesday.

In the meantime, on the way home from Cincy, I started feeling chilled and it just got worse and worse. When we finally got back to the apartment, I took my temperature and it was 101.2… and within the next 10 minutes, it spiked to 103.8. I called the Cincy docs and asked what I should do and they recommended heading to the ER for cultures and antibiotics. So, we got the kids all situated and headed to the ER. We were there from about 10:30pm to 2am. We had two great nurses, I’ve never laughed so hard in the ER :) So once all of that was done, we went home. Brian has been so amazing. He took work off today to help with the kids and let me rest. I slept in until 12:30pm! It was a beautiful thing. I have felt relatively good all day! No sign of fever… until about 4:30pm, I felt “off”. My temp was only 99.2… but within the next half hour it had made it to 101.4…. :( I would have just taken ibuprofen and called it good, but the cincy docs had called me earlier that day and told me that anything 100.4< I had to go in for…. And that I wasn’t allowed to take fever reducers (ibuprofen and Tylenol) because they would mask the fevers.  

So I called my mom and she came down to get me and take me in so that Brian could stay with the kids so they could get decent sleep tonight, and Brian could as well. My mom will be spending the night and helping out tomorrow so Brian can get some work in. I’m so incredibly grateful for her.

As I’m writing this, doctors are coming in and updating me about things. My ANC is 1000, which is not good. Basically, it means I am vulnerable to bacteria/viruses/illness right now. Also, in the time between my ER visit last night to my ER visit currently, my hemoglobin has gone from 11.4 to 10.5… that’s a fairly significant drop. She explained that they expected a little drop since they gave me IV fluids, but this was a much larger drop than that… :(

Oh, and when I spoke to the cincy docs earlier today, they mentioned, if things worsen too quickly, they would have to admit me and move warp speed on figuring out a treatment plan.

I feel like it’s time to cut and dye my hair…