Back in Hershey

Jeff's counts are now stable and he is no longer needing transfusions. They took another chunk of bone marrow today for biopsy, and we're expecting to see good things. His kidney function is showing some improvement. He'll get another dose of chemo to his CNS on Wednesday along with more fluids to help with the kidney problems.

We are still having insurance issues. Hopefully everything will work out in the end, but I have to say it's disheartening to have to worry about whether or not you can afford a possibly life-saving procedure.

I would like to make some political statements on this post, but I don't think I can do it without being impolite, so I'll keep my mouth shut.

Discharged

Jeff was discharged late yesterday afternoon with orders to drink plenty of fluids and visit Day Hospital every other day. His kidneys aren't getting any worse, but they haven't improved much either. More later...

Admitted Again

I have way too many posts that are titled "Admitted." Oh well, I'll probably collect a bunch more before this is all said and done. Anyway, Jeff's creatinine level was a bit higher yesterday than it was on Monday, so Dr. Claxton thought better safe than sorry. He was admitted to the acute care wing of the 6th floor so that the kidney doctors could have their way with him. So far, he's just been getting fluids, peeing in little laboratory cups and last night they looked at his kidneys via ultrasound. Most likely, the damage was done by either the IV vancomycin or daptomycin that he was getting for his line infection, and his kidneys should start to get better over the next week.

Thank you for all of the good comments and quotes. I took the time to go for a run this morning, and for me, absolutely nothing works better than exercise to perk me up. As soon as Jeff is able, I'm going to have to get him moving around. It's obvious to me that the body and soul are intertwined in ways that can't be completely explained physiologically...the more you move, the better you feel.

Back in Hershey

We've settled back in Hershey for the week and had an appointment with Dr. Claxton yesterday. Jeff's blood work showed that his white count is up to 2.9, but his differential wasn't back by the time we left, so I'll guess we'll find out today whether or not he is making good cells. His platelets are still very low, but they're going to try and get the Ommaya in later this week with the help of some transfused platelets.

In addition to all of that news yesterday, it turns out that Jeff's kidneys are failing again, so most of his meds have been discontinued. They'll follow his creatinine levels closely this week to make sure that everything starts working properly. In the mean time, Jeff is still feeling a little weird and worn down. His taste buds have been rejecting everything but fruit and other sweet things, so he's not been eating much.

I can tell you that this has been one long, never-ending road, with way too many bumps, and smooth sailing is not expected anytime soon. I would like to think that I'll come out of this a better person, but in reality, there are certain hardships in life that don't really make you better, stronger or happier in the long run. This is one of them. You can only dance in the rain so long before your feet and hands start to prune, your body starts to shiver and you need to find shelter from the storm.

Just So You Know

Nobody is panicking over the money stuff. Aside from a minor meltdown by me, because this is just one more thing to stress about, we are all okay. At this point, I'm going to assume that the doctors and other people whose job it is to deal with such nonsense, will come to a resolution with Jeff's insurance company. We were originally told that the contract Health America has with Jeff's employer states that mini-transplants are covered, so I can't see how that would have changed right in the middle of Jeff's treatment plan.

Discharged

Jeff was discharged today, and we're home for the weekend. More fun in Hershey to come on Monday. Jeff is feeling okay, but is still on some IV antibiotics that we have to administer through his central line for a couple more weeks.

To add insult to injury, Jeff's insurance company has announced that they aren't going to pay for his transplant. This news came the day after we found out that Dr. Claxton had chosen a donor. Really, this makes no sense. They allowed the hospital to go through the steps of searching for a suitable donor, and only then denied the treatment. I'm not really sure where that leaves us, but I do know that no less than three people, including Dr. Claxton, spent all day on the phone trying to sort this mess out. It's no wonder that health care in this country is so ridiculously expensive. Insurance companies get to dictate who gets what, and doctors spend half their time fighting with them about it.

In the mean time, the final medical evaluations of the donor get postponed until the finances can be worked out, which results in everything getting pushed backed and decreases Jeff's overall chances of surviving this blasted mess.

I might have more to say about this later, but right now I'm exhausted and I'm going to bed.

Update

Jeff's headache is mostly gone, and generally he is feeling well. He has had a little bit of nausea, and he's a little groggy from the pain medication, but he was able to get up and shower today, which was a huge plus for those of us smelling him. Other than that, things were pretty uneventful today.

JD

Nicky sent me some pictures, and I especially loved this one. Thought you would enjoy. That's JD's cousin, Colby, in the background. (I haven't been to the hospital yet this morning, so I'll have to update on Jeff later.)

Staph Infection

Although Jeff does not have a fever, the cultures that they take from his line every morning started growing staph over the weekend, so they started him on another antibiotic. He can't be discharged until his line is clear, so we're here for at least a few more days.

Because the lumbar punctures that Jeff gets every week (for the chemo) have been quite painful, he requested that they use the x-ray machine for better aim. Well, turns out that it worked great. Jeff had no pain when the fellow doing the procedure put the needle in his back. The bad news came when the fellow realized that he never ordered the chemo, so Jeff had to wait with a needle in his back for an hour. Needless to say, my husband was VERY mad.

This morning, he has a pretty horrible headache, probably a result of yesterday's procedure. Hopefully, he gets some relief from the paid meds.

Maybe Tomorrow

If nothing changes, Jeff will be discharged tomorrow, after getting another shot of chemo to his central nervous system. We are again going to try and get 2 days off before having to come back here, which means that with any luck, we'll be home for a few days.

This week was not a fun one for Jeff. The infection caused his reflexive reaction time to slow, causing him to pass out in the bathroom. Luckily, his fall didn't cause any internal bleeding and he is fine, but having to have a cat scan of your head to make sure that you're not bleeding to death is a bit scary. (When you're low on platelets you can spontaneously bleed, so a fall is a huge deal. Jeff's platelets are around 15 right now - normal is 150 - 400.)

White count is 0.3 today...I'm hoping for a little bigger jump tomorrow, but I guess I need to get used to baby steps, as we're in this for the long haul.

Fever Free??

Jeff has been fever free for about 30 hours, and hopefully will remain that way so we can bust him out of here. His white count was 0.2 today, so I'm hoping that's the start of a real climb.

Hopefully, I'll be posting more good news soon.

Another Temp

Jeff ran another temperature early this morning, so it will be at least Friday before he is discharged. His white count is still lingering at 0.1, but nobody seems too concerned about it.

Fevers & Donor Drive

Jeff has an infection in his central line, so the docs started him on the appropriate IV antibiotic. His temp hasn't risen yet today, but he needs to be fever-free for about 36 hours before they'll discharge him. Let's hope he's home by Thursday.

The donor drive was a big success. We registered 186 new people and raised about $3500 to help with the cost of the tissue typing. Thanks to everyone who helped make the day run as smoothly as it did, and special thanks to all the new donors.

Don't Forget

Please don't forget about the donor drive:

Tuesday, August 11
Johnsonburg Fire Hall
4 - 8 PM

Jeff was admitted to the hospital again today because of fevers. Although it looked like he's been on the verge of recovering his blood counts for over a week, he is still not there, and actually, his white count is back to 0.1. Since October of 2007, Jeff has had a truck load of the most intense types of chemotherapy that exist, so it really shouldn't surprise us that his body is taking its time to recover. It's just frustrating, and Jeff would really like to start feeling better.

JD and I are going to stay home for a few days, while Jeff's mom takes care of things in Hershey. See you at the marrow drive.

The Plan

Well, we are home and very happy to be here.

Jeff had an appointment with Dr. Claxton today, and we now have a better idea of what to expect for the next eight weeks. For the next two weeks or so, we'll be traveling to Hershey twice a week for visits to Day Hospital, where Jeff will get transfusion support until his counts recover. Once his counts do recover, and he is making and holding on to his platelets, he'll get the reservoir installed in his head, through which he'll receive chemo to his central nervous system once a week. Also in two weeks, they'll perform another bone marrow biopsy, which will help Dr. Claxton to decide which chemotherapy regimen Jeff receives next. Regardless of the results, he'll be getting another week-long treatment in 3-4 weeks, to help his odds of being in remission at transplant time. If all of the transplant planning goes as expected, AND he is in remission or very close to it, AND his central nervous system is free and clear of disease, the transplant will take place in about 2 months.

Jeff's immune system is still severely suppressed, so if you're sick, please keep your germs at home. Other than that rule, I think it would be good for Jeff to get visitors and phone calls.

Nothing New

Not too much to report. Jeff is feeling okay physically, aside from the fatigue and weakness. However, both of our mental and emotional states could use some work. We have an appointment at clinic tomorrow with Dr. Claxton, where hopefully, we'll learn a little more about what to expect over the next month or so. I'm going to push for them to schedule his Day Hospital visits with 2 days between, so that we can go home and just commute back and forth. We miss our dogs, our bed, our families...I could go on and on.

JD had a little bout with a virus this week. He had a fever, a one-time vomit (all over my car, of course) and he has a couple of mouth sores. I think maybe it's that hand, foot and mouth thing that kids get. He was feeling much better tonight, and so far, Jeff has remained symptomless. JD has been an exceptionally healthy kid, so I shouldn't whine too much about this, but the timing wasn't exactly great. Then again, JD arrived into this world 6 days after Jeff's first transplant, so I should probably expect that my life is going to abide by Murphy's Law.

Anyway, with a little persistence and some late-night driving, we might get to sleep in our own bed tomorrow night. Three cheers for that.

The Donor Search, Etc

Jeff's counts are starting to rise. His white count is up to 0.3, and his red blood has been stable. He needed platelets as recently as Friday, but I'm hoping that no more transfusions are needed. Oddly enough, Jeff's taste buds seem to be making an early recovery. He was able to taste almost everything he ate today, and he downed somewhat normal amounts of food. Because he has lost about 20 lbs, and will probably lose more during transplant, we need to continue to keep him well-fed.

You may or may not have heard that the preliminary data available through the donor registry shows several 9/10 matches for Jeff. The hospital is currently working through the logistics of getting confirmatory typing completed on the possible matches, and choosing the best all-around person for the job. The process usually takes about 6 weeks, so we have to hope that one of the possibles works out in a timely manner.

In the mean time, please do not let this information deter you from attending our local donor drive. Jeff only has a match because of the thousands and thousands of people that have been registered in drives just like ours, and have committed to helping an absolute stranger. There are still lots of people who need transplanted, but can't get it because they don't have a suitable donor. PLEASE, please, if you fit the bill medically, make the right decision and attend the drive.