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!

Day 21--Election Day!

Today's a great day--not just because it's the most exciting Election Day of our lifetimes but also because Torger got permission to skip his magnesium drip yesterday and reduce it today. Hoorah!! He had his regular appointment for bloodwork Monday morning, and both his potassium and magnesium were too high. He's had such a bad reaction to the magnesium infusion that this is a big relief. We understand Dr. Tse's concern about not getting too excited as Torger starts to feel healthier because that could put him at risk. But this is also a good reminder that Torger knows his own body better than anyone else, and he's had a pretty good track record so far of identifying what works for him and what doesn't. Without the magnesium, he had a good, restful day. He was able to eat, sleep, read and listen to music without feeling terrible.

We've had amazing support from family and friends throughout Torger's illness, which I'll write about in greater detail in a future post. Today, I'd just like to highlight the happy surprise we received yesterday from family friend Katie Hoh, a teacher in New Jersey. Her third graders sent us a package of handmade cards, each with a joke that truly did brighten our day. So, I'm pleased to share some of these with you now to brighten yours:

• From Hannah: "I heard the invisible man married the invisible woman. Heard their kids weren't much to look at."


• From Isaac: "How do you get a baby astronaut to go to sleep? You rock-et."


• From Cameron: "What do you call an unidentified flying cow? A MOO-f-o."


• From Lyndsay: "Why did the puppy jump into the river? He wanted to chase the catfish."


• From Nicole: "What did the prince think of Snow White? He thought she was a little flaky."


• From Dominic: "What do you call a pirate with a wooden leg? I don't know, I'm stumped."


• From Lauren: "Why did the little pig hide the soap? He heard the farmer yell, 'HOGWASH!' "


• From Guinnevere: "Knock Knock. Who's there? Emma. Emma who? Emma 'fraid of the dark!"


• From James: "What did the dirt say to the rain? 'If you keep this up, my name will be mud!' "


• Also from James: "What did the beaver say to the tree? 'It was nice gnawing you!' "


• Another from James: "What do skeletons say before they begin dining? 'Bone appetit!' "


• And still more from James (Go, James!) : "What did the rake say to the hoe? 'Hi, hoe!' "


• From Katie: "Why can't an elephant ride a bike? He doesn't have a thumb to ring the bell!"


• And another from Katie: "How do elephants earn extra money? They babysit for bluebirds on Saturday nights!" (I confess, I'm not entirely sure I get this one...but I like it.)


• From Stephanie: "What did the Invisible Man's mother say to him? 'We never see you anymore.' "


• From Storm: "Knock Knock. Who's there? Cameron. Cameron who? Cameron over here."


• From Jaclyn: "What is black and white and red all over? An angry zebra."


• From Lisa: "Knock Knock. Who's there? Howard. Howard who? Howard you like to hold the puppy?"

Now get out there and vote if you haven't already!

Day 20--Pancakes A-Plenty

We are becoming a little food-obsessed. Keeping Torger's weight up and getting food in him that will stay there is a constant challenge, and certain kinds of food are proving useful in helping him get his many pills down three times a day. For me, the obsession comes, in part, from trying to figure out creative ways to prepare healthy meals in our tiny little doll kitchen. (I've already had an unfortunate, charbroiled banana bread experience with the toaster oven.) Good old-fashioned pancakes are turning out to be one of our mainstays because 1) I can make them in one pan on the stovetop; 2) they provide enough heft to calm Torger's stomach for his morning meds; and 3) they're delicious! Here is my favorite wonderful pancake recipe for two--it makes three or four medium-sized pancakes each. If you have more than two people, just multiply. Torger just puts honey on his, but I like mine with butter and maple syrup.

In a bowl, stir together:

1/2 cup white flour
1/3 cup whole wheat flour
1 tsp. baking powder
1/8-1/4 tsp. salt (depending on how much you like)

In a separate bowl, whisk together:

1 egg
1/3 cup milk + 1/2 cup milk (I've never added the fractions to combine this into one number, and it's easy to remember because it's just like measuring out the flour. Also, I use skim milk, but I'm sure other kinds would work just fine.)
1 T. honey
2 T. canola oil
1/4 tsp. vanilla

Stir dry ingredients into the wet ingredients until just blended. Batter will be lumpy. If it seems too thick and cushiony, just add more milk to thin it to your desired consistency.

Heat a skillet until a droplet of water will dance on the surface. I use a non-stick skillet with no oil, which works perfectly. Pour batter onto skillet. If you want to add in treats here (I like to add blueberries), this is the time to do it. Just dot them onto each each pancake. Batter should bubble, and when it just stops, flip 'em over and cook until they're done.

Day 19--Oh, the Magnesium!

Well, it turns out we don't actually have a home healthcare nurse coming in daily to administer Torger's IV magnesium infusion. The nurse came by Thursday morning and taught me how to hook Torger up and run the equipment, then left us with a fridge full of IV bags, some rubber gloves and a pump. Now it's one of my jobs to make sure he gets his 6 gram dose of magnesium every day, even though he really, really hates it. When he's not getting magnesium infused, he feels energetic and good. But when he's getting the infusion, all he can do is sit around and moan. I feel like I'm torturing him every time we have to administer it--he says it makes him feel like he's burning inside and he can hardly stand it. Friday's infusion was so painful for him that we called Dr. Tse yesterday to ask whether we could reduce the dosage, since 6 grams is an awful lot and Torger's levels were all good when we went in for his bloodwork on Friday. Dr. Tse let me slow down the pump so Torger gets the dosage over the course of six hours instead of three, which has helped some. But he also told me that I have to be the bad guy now and make Torger follow his medical regimen even when it's hard on him. He reminded me that we still have a long way to go in the treatment process, and even though Torger feels good, he's far from well. Apparently, Torger's body is just chewing up magnesium and potassium right now, and Dr. Tse said if the levels get too low, the complications could be life threatening because magnesium is necessary for heart and muscle function. So we're doing as we're told, and Torger's just suffering through it.

In addition to being on the magnesium pump for six hours every day, he has to take the following medications now:

At 8 a.m. --Pantoprazole, 40 mgs, to prevent ulcers; voriconazole, 200 mgs, to prevent fungal infections; tacrolimus, 1 mg., an immunosuppressant; ursodiol, 300 mgs., to protect his liver; acyclovir, 800 mgs., to prevent viral infections; amlodipine, 10 mgs., to treat high blood pressure (from all these other medications); potassium chloride, 40mEq., to treat low potassium; benzonatate, 100 mgs., to treat his persistent cough; metronidazole, 500 mgs., to prevent diarrhea; and a multivitamin.

At 2 p.m.--Another 300 mgs. of ursodiol for his liver; another 40 mEq. of potassium; another metronidazole; and more of the cough medicine.

At 8 p.m.--Yet another 300 mgs. of ursodiol for the liver; still 2 more of the potassium pills (which are huge and have remarkably sharp edges); another 200 mgs. of voriconazole, the anti-fungal; another 800 mgs. of acyclovir, the anti-viral, another 1 mg. tacrolimus; another metronidazole; and another cough pill.

Then twice a day on Mondays and Thursdays he gets Bactrim to prevent pneumonia.

It's quite a cocktail! And it's a big adjustment for Torger, who doesn't even like to take aspirin normally. Our days are pretty well structured around administering various medications, although he did manage to have some fun on Friday. The 11th floor BMT unit had a little Halloween party, so he put on the mask he's required to wear whenever he's out, we wrapped around the rest of his face with gauze, then he donned sunglasses, a suit, gloves and a fedora to be The Invisible Man. His voice his so hoarse that he did a nice Claude Raines imitation! The nurses and other patients got a laugh out of him showing up, although they wouldn't have been able to tell who he was if I hadn't been with him! I did try to take his picture for the blog, but it didn't turn out (because he was invisible).