Chicken Soup for the Chicken Soup Hater's Soul

Among the many pieces of advice Dr. Tse dispenses on a daily basis ("Always wear sunscreen!" "Avoid construction sites!" "This is a long march!"), he has been telling us he wants Torger to eat chicken soup. Every day. Now, this is normally sound advice, since studies are starting to show that chicken soup really is good for bolstering the immune system. But Torger hates chicken soup. Like some other Hougens I could mention, he is a notoriously fussy eater. But some of the foods he used to love don't taste as good to him now, so he has been willing to try a few different things these past few months. I rejoiced when he consented to eat pot roast and didn't even seem to mind it. But chicken soup is a struggle. I've been trying to sneak chicken broth in wherever I can. ("No, really...this is potato soup.") And this weekend I'm going to try making a batch of homemade chicken soup, which I think he'll like because I can tailor it to his tastes. But if he's going to eat it every day, sometimes he's just got to choke down a can of chicken noodle. He knows there are certainly much worse treatments he could be enduring, and he's making the effort to get down all the broth instead of just picking at the noodles. It's just one of those things he has to do, whether he likes it or not. This is a long march.

Day 28--Going to Be Great

This will be a great day because we don't have to go to the hospital. The visiting nurse is coming over to teach me how to inject Torger with his saline fluid, which we're hoping will reduce the hospital visits to about three times a week. After several days off the Tacrolimus, Torger started back up on it last night at a reduced dose...and he's sleeping soundly at this moment, which is a very good sign that the reduced dose is an improvement. His liver and kidney function have stabilized thanks to the daily liter of IV fluid he's been getting. The GVHD rash on his skin has also settled down. Yesterday, we were both able to exercise a little, which felt really good. I got on the treadmill, and he worked with a weighted ball to try and get some of his muscle strength back. It's really important for him to get up and moving, even when all his body wants to do is sleep. So we're trying to make it a regularly scheduled part of our hotel routine. Even walking up and down the stairs from our room to the exercise room is a good outing for him.

On a different note, we got a card from Torger's donor! Thanks to unintentional clues dropped by several members of the hospital staff, we suspect the donor is from Baltimore. We know for certain that she's a 29-year-old woman who has never been pregnant, but that was about it until she sent this card through the bone-marrow donor registry. She's not allowed to use her name, but it's a great letter, written the night before she made the cell donation:

"Dear Friend: I address this letter to you as my friend, because though I know little about you--Chaver--friend in Hebrew--means friend but also connected. And in some way, we will soon be connected--and though it's unclear if you will now have my curly hair, love chocolate, and cycle centuries--we will always have this connection. I want you to know that it is an honor and privilege to give to you in this way. I feel very blessed. Four years ago this week, my mother, who was 52 at the time, was diagnosed with cancer. Our family journeyed through some very difficult and scary times but since then she has celebrated with us three siblings' weddings, five new grandchildren, and many holidays. Our family is permanently changed by this, but we have grown closer and stronger together. I hope this note brings you hope and strength. As I prayed for you, my friend, last week on Yom Kippur, I prayed that you and those close to you are blessed with hope, strength, and healing. My family is all rooting for you--they want you to know you are getting 'good DNA' and we are now all family. To a speedy and complete recovery. L'chaim/TO LIFE! Love, Your Friend."

Back to the Hospital

You can tell from his expression exactly how enthusiastic Torger was to be back in the hospital yet again today to get more fluids. My sister Marcy theorized at one point that being in the hospital for weeks at a time would be a lot like being stuck on an airplane--in coach--for the same amount of time. This is the best comparison I've heard so far, and it explains why going back in day after day is not a lot of fun, no matter how much we love the staff. His nurse today said, "At least you guys are patient and polite about it...some people get really angry because they're so sick of being here." (And yes, Torger's pants have a hole in the knee. They're wearing out, but we're waiting to get him some new pants until his weight stabilizes. Right now, all of his clothes are huge on him!)

And Now, For a Brief Political Commentary...

Torger's life has been saved by stem-cell research, so we were encouraged by this news today. While Torger's transplant wasn't from embryonic stem cells, we've gained a new appreciation for how important this kind of scientific research is to fully understanding diseases that kill people of all ages, including children. The methods Torger's doctors are using today weren't available even 10 years ago--only research has made his current treatment possible.

Day 26--Catching Up

It's been a tough week in a lot of ways, although Torger is doing OK. Dr. Tse has been monitoring his kidney and liver function closely and adjusting his medications on a daily basis to try and prevent any problems. Apparently, every patient is different in terms of how their bodies absorb the medications, and Torger is like a little sponge...he just takes it all in. As a result, the Tacrolimus (an immunosuppressant they're using to inhibit graft vs. host disease) builds up in his system, which can cause liver and kidney failure and potentially be life-threatening. So they've been checking his blood daily and giving him a liter of saline every day to help flush the chemicals through his system. We now fully understand why we're required to live so close to the hospital during the first 100 days, since we've had to go in every day this week (except Thursday, when Torger pretty much just slept all day recovering from the strain of the day before). Wednesday was the toughest day because the nurses tried to give Torger an infusion of saline through one of the lines on his Hickman catheter, and the line burst! The nurses were pretty surprised...apparently, none of them had seen that happen before. Torger was terrified they were going to have to replace the whole catheter (which the doctors all thought would be necessary) because in his current state of immune deficiency that would be very dangerous. But fortunately, there was a handy RN who was able to repair the line with what looks like some little pieces of plastic tubing and thread. But in the meantime, Torger wasn't allowed to eat or drink for nearly 15 hours, which was really hard on his system...and by the time we got to our late-in-the-day appointment with Dr. Tse, he was just spent. We were both completely frazzled when we got home that night, and I made the mistake of checking my e-mail only to discover that my boss at the University had resigned. After a mini-meltdown, I got ahold of some friends on campus and talked to the interim president, who reassured me that I still had a job. But neither Torger nor I slept well that night.

On Monday, Dr. Tse is making arrangements so I can start giving Torger his extra fluids at home, along with his magnesium, which will make our lives easier. One thing that has been frustrating for both of us is how slowly everything moves now. Torger says that the hospital seems to just slow time down to the point that you either go insane or quit caring about time. If you're scheduled for an hourlong appointment, it can easily take five hours. And at home, Torger himself--usually Mr. Speedy--now moves really slowly, so that getting dressed, putting on his shoes, and brushing his teeth can take the better part of an hour. He hates it because he says it makes him feel so weak, and I admit I get antsy and have to stop myself from rushing him along. He just has very limited energy, and he can't push his body in ways that have always been normal to him.

So now we're here in the hotel, getting him prepped to go back to the hospital for yet another infusion in a couple of hours, after he finishes getting his infusion of magnesium here at home. On the plus side, his digestive problems seem to be clearing up, and he is showing quite a bit of level one graft vs. host disease (GVHD) in the form of a rash on his skin. It's appeared on his face, back, legs, hands, and groin, and this is what the doctors want to see. A little bit of GVHD is necessary for Torger's recovery, but too much is very bad. They took about a dime-size patch of skin off his hip on Friday to biopsy, and so far, Dr. Tse likes what he's seeing. So we're keeping our fingers crossed that everything will just go smoothly for the next few days!