Wow! Time flies these days. Tons has been happening around here, most of it would be better to post with pics so that means I really need to find that camera cord. It's around here somewhere, right?
In other news...
Mainly 3 things on my mind at the moment:
First and fastest to blog is we are having another baby, soon actually. I'll be started Nov. 9 if I haven't had him by then. And that's the fun bit, it's a boy! That should be fun! Everyone's excited, though I admit I am terrified with so much that needs doing and not much time to get it done. Eek!
Second, we thought we were moving to Vermont, it was really in the works and life was quite on hold with preparations, and then, at the very, very last minute, it fell through. Which turned out to be an amazing blessing because....
Third thing on my mind non-stop is... Ben's new condition---(keeps him inpatient at least 2 days a week and at the hospital for treatments, tests, etc. at least another 2 days a week)
It's called Evan's Syndrome and has been a big struggle for Ben so far. Not that I'm not optimistic for the future, but this has definitely been rough for him. It all started on Sept 22 when we found a hematoma on his back without having had any injuries. We thought it was strange. He had a blessing and we watched it during the night. The next morning it was double in size. I called his Hematology/Oncology drs. We made an appt for the next day.
But later that same day more and more hematomas and bruises were popping up along with lots of petechiae (tiny red & purple spots all over skin on body). I was nervous. I got him in to another dr that would see him that day. He ended up sending us down to the ER where it was found his platelets were 5, supposed to be 150-400, and so Ben was admitted. While in the hospital he had IVIG treatments and given lots of steroids to start. But unfortunately no change in the platelets.
He tested positive for antibodies for white blood cells, platelets and red blood cells; and that's why he was diagnosed with Evan's Syndrome. What this means is that his body recognizes his own blood as foreign and attacks and destroys it. We already knew about the white cells, since he'd been battling autoimmune neutropenia for the last year. Now to find out the other blood cells are affected too is a serious bummer for Benny.
So...we went home, with high steroid doses that make him feel truly awful and with instructions from the docs to watch him closely, particularly for any head injuries (that would cause bleeding in the brain) and any signs of internal bleeding. We went back frequently to check the blood levels and there was still no change. He was taken off Prograf, the immune suppression med he's always been on to protect his heart, and was put on Cyclosporine instead. He also started his chemo treatments again to further suppress his immune system. With those three big changes, we were hoping to see some improvement. There was none.
Instead, last Saturday, Oct 6, he started bleeding internally. Luckily, it was in his bladder and so we were able to see it coming out of his body, though I will tell you, it was terrible to see. He was promptly admitted again with platelets now only 1. Given platelet transfusions to try to stop the bleeding but they didn't really help; I guess his immune system attacked them too quickly to get benefit there. He was started on crazy, rediculously high IV steroids, a 3-day dose. He finished that on Monday and had his second chemo treatment (it's a 4-week plan for that). Friday he came back for a PICC line placement and a bone marrow biopsy and aspirate. Still no change in platelet count. PICC placement didn't go as well as we'd hoped, radiologist says he couldn't place it as deep as he wanted because all his veins, etc, are completely occluded from years of intense use. Tell me about it. Seriously. Not sure how long the line will be usable. We'd like to place a more permanent port, but surgeons won't do it until his platelets come up significantly. Ben goes back Tuesday to check count and to get next chemo treatment. Should find out bone marrow results by end of week.
As far as how he is doing with all of this, you know Ben, he is amazing. That's really the best word for him. He's still covered in huge hematomas and lots of bruises and red dots but he is super stoic and tough and if asked how his bruises are he answers that they are fine and they'll be better tomorrow. He doesn't complain about anything we have to do to him, though it's obvious he really hates the cyclosporine. It was hard when he had a lot of steroids going through him because the side effects were really not fun for him. That was hard. So glad they are starting to wear off a little I think.
Hoping for good news on Tuesday! Hoping these crazy contractions just go away until I have time to deal with them and that we can get all we need (which unfortunately for a nesting momma feels like the bare necessity) done before baby #5 joins the family. By the way, still no name for him, taking suggestions.... :)
