I'm Losing MY Marbles

OK, I haven't posted in a loooooong time and now I have to catch everyone up. I'll try to give you all the Reader's Digest version, but things are pretty crazy around here. Bottom line for those of you who don't yet know: Greg's been in the hospital since Saturday with an "infection of unknown origin." But, more on that later.

First, while we were on our way to St. Louis Friday for his regularly scheduled visit, his internist called about the dizzy thing. Seems he's NOT losing his marbles. The heart monitor found 2 episodes of tachycardia. Seems that, coupled with low hemoglobin = dizzy spells. So, he called in a prescription for a simple beta blocker, which should take care of the problem. So far, so good.

Then, we saw Dr. Vij (the hematologist) for his regular visit. Bottom line: His labs still suck, may be getting a little worse, but we don't want to be in a huge hairy hurry to do the allogeneic transplant because its so risky. In reality, he could die from the procedure. He says there's a little bit of art and a little bit of science involved, and at some point he's going to have to make a decision to go ahead, but we're not there now. We go back in 2 months. They are looking for a "Matched Unrelated Donor" or "MUD" (I didn't make that up), and have a few who match 7 out of 8 markers. That's enough to go ahead, but still risky. He'd like to find a donor who is 8 out of 8, as that's almost as good as a sibling match. Thanks to all who've registered! Maybe you're one of the 7/8!

This is where all the wheels start to come off.

Then, we went downstairs for his PET and CT scans. True to form, no one told Greg to stop taking his blood sugar medications, so they can't do the tests. The contrast dyes they use are all sugar & in combination with the meds could put him into a coma (I've probably got the details wrong, but its something like that). Matthew was VERY disappointed because I was going to take him to the zoo while Dad had the test done (it takes 3 hours). But, as we had other fun things planned for the weekend in KC, I managed to get his tears under control. Alas, it was not to be.

So, off to KC to watch Eric's playoff hockey game. It was a 4 hour trip, and we wouldn't have gotten to see the game if they had run the tests, so we were counting ourselves lucky at this point. We got there in time, and Eric and his whole team played great! Probably everyone's best game of the season. And, they won, which meant they get to play Rockhurst Saturday morning. We were pretty excited. Rockhurst is REALLY good!

We got back to our hotel about 9 Friday night, and Greg was really cold. At first, we thought it was just from being in the ice rink, but no such luck. I took his temp (I now carry around my own thermometer) and it was 102. He had a rotten night of no sleep, and in the morning it was 103. Going in the wrong direction!

So, I do what I'm supposed to do, and call Barnes hospital in St. Louis and ask to speak to the BMT fellow on call. He calls me back, and after I explain where we are and where we live, he tells me its too far to bring him directly there. He says to take him to the nearest ER, have him evaluated, and they will arrange transport to St. Louis to have him admitted there. Thus our long national (or at least interstate) nightmare begins......

The nearest hospital is in Overland Park, Kansas (a suburb). I tell them his history and his symptoms (cancer, 2 stem cell transplants, history of infections, particularly pneumonia, MDS, low lab counts, high fever, etc.). So naturally, they think he's having a heart attack! Seriously! Seems this hospital is big on cardiac stuff, and doesn't even have an oncology department, so I suppose it made sense to them. I won't go into all the horrid details, but here's the highlights: His plateletes were at 7 (!) They are supposed to be around 140. So, they gave him aspirin! He was having discomfort in his chest when he took a deep breath, so they gave him a nitro patch. I'm not making any of this up. They filled him with IV fluids in the 7 hours we were in ER, so when they finally admitted him to a room (on the cardiac care unit!), the doctor felt his ankles and said he might be having congestive heart failure. I pointed out that his ankles were just fine when I brought him in. She didn't listen (to anything I said). I never did catch her name, but I just call her Dr. YaYa SureSure. That's all she said the whole time I was talking, and then she ignored everything I said. Seems Barnes didn't have a bed available. So, we were (and still are) at their mercy until one was available and they could arrange for transport.

So, its now Thursday afternoon, and Barnes STILL says they don't have a bed. (I guarantee that if I had brought him to their ER, they'd have found him a bed.). Sometime Monday the cardiologist who they brought in came into the room, hat in hand (figuratively) and very sheepishly told us that, after blowing through most of his insurance money running unnecessary tests, his heart checks out just fine! Gee, we only told them that Saturday. But what do we know? And I didn't even stay at a Holiday Inn Express last night.

I came home Tuesday night, as Greg was feeling a little better. So, I'm in Springfield, and Greg is still stuck in Kansas. He was getting better, and his fevers were around 100 to 101. However, last night he hit 103 again, and appears to be holding there. He's even had some periods yesterday where he was normal (as if anything about this were normal). If he can go fever free for 24 hours with antibiotics, and another 24 without antibiotics, he can go home. Unfortunately, our 48 hour clock keeps getting reset.

I personally called Barnes yesterday and pitched a hissy fit -- but it did no good. There's no room at the inn. While I don't necessarily believe that, there's not a darn thing I can do about it. So we wait......

There's tons more I can tell you all, but I'll save it for the made-for-TV miniseries. Anyone have any suggestions on who should be cast? I'm thinking maybe Angelina Jolie as me, just because the physical resemblance is so close. Perhaps Russell Crowe or Daniel Craig as Greg, for the same reasons, but we're open to suggestions.

Don't even get me started on the lack of support and services for patient's family members, or the food in the cafeteria at this hospital.

I'll post again tomorrow with an update, as I now have Internet access. I had my laptop with me all weekend, but my firewall wouldn't let me access their system.

Greg is asking that the telephone calls be kept to a minimum, as he's trying to get as much sleep as he can, and I'm not there to answer for him. And, the button on his phone that turns the ringer down is broken.

Keep praying, please! And if you need something specific to ask for, how about a bed at Barnes?

And I would be terribly remiss if I didn't thank all of you, but especially the Altoonians for transporting and taking care of the boys this past weekend; Kris and Caitlin Wherley for taking Matthew swimming Saturday morning at the hotel; and the Connors for taking care of Matthew Monday & Tuesday. Everyone's support is so important to us. Its allowed me to put off my complete nervous breakdown for at least another day. I checked with my secretary -- she says I don't have time for one until a week from next Wednesday anyway.

Tons of thanks to all.

Love,

Greg, Ann, Eric & Matthew

P.S. We lost to Rockhurst, but we're told out boys played a GREAT game & left the ice with smiles on their faces. We ended up 3rd overall, and Rockhurst won the championship. A great end to the season.