Muddling Through

The transplant team is very happy with Tim's progress vis a vis the stem cell transplant. He has achieved engraftment (the stem cells have found a home and are working). They are changing him over to oral medication and are beginning to work on everything that needs to be in place to support him at home. This process can take a week or more, so don't take this news to mean that Tim is going home this week.

Unfotunately, the vasculitis is taking longer to resolve. While Tim is definitely alert and able to walk, talk, etc. he still exhibits signs of mental difficulties. For example, Tim can't work the television remote. He even tried to treat it like a telephone at one point. Just so you know, I have taken away his computer and his cell phone and don't leave the hospital room phone where he can easily get at it.

The doctors tell me that they have never seen anything like this before, so they can't predict what will happen. They said that we need to be patient and give the steroids time to decrease the swelling in the brain. They also said that progress will be slow and sometimes Tim may appear to be regressing. As long as the general trend is improvement, that is the best we can hope for at the moment. They hope to see decided improvement by the end of the week and will wait until then to make any changes unless he takes a decided turn for the worse again.

Thanks for the good wishes, cards, visits, gifts that have been sent our way. I apologize for not sending out individual thank yous, but I'm just mentally and physically exhausted.

Tim Responding to Steroids

Tim appears to be responding to the steroids. Although he still exhibits symptoms of confusion and his thoughts are very slow, he is much more alert today than yesterday. We will have to see how he feels on Monday after receiving three very large doses of steroids. They still have no idea what caused the vasculitis or how long it will take Tim to return to normal.

Tim Watchers

Tim's thought processes are more than a little confused these days. I have decided that I am more comfortable when someone is in the room with him. He needs help ordering his food and he needs someone to page the nurse when he tries to get up and go to the bathroom. He's not supposed to get out of bed without supervision. If they start him on steroids, I am concerned that he may try to get up and walk around or pull out his IVs or become aggressive.

I need folks that would be comfortable coming downtown to the hospital for a three or four hour stretch, probably weekday evenings or weekend afternoons or evenings. You would sit with Tim, page the nurse if he needs to go to the bathroom and call me if his condition changes. You can't come if you've had a cold or other illness in the last ten days. You have to wash your hands upon arrival and wear gloves if you're helping Tim with anything. Parking is $10 in the hospital lot. If you think you're up for that, drop me an email or post a comment to the blog. I'll be in touch. Make sure you leave your contact information in case I don't have it.

Thanks for the Good Thoughts

Many thanks to Amy, Brian (Ryan), David, Denyse, Veronica, Oscar, Sr. Patrice, Pat Ward & family and the many others that have sent cards and good wishes our way. It's nice to know that so many people are thinking of us.

No Changes, No Answers

Tim is still sleeping most of the time. The doctors have started him on IV antibiotics and IV antivirals, although they have no evidence of any infection. Tomorrow they will start him on steroids and hope that the swelling in his brain will go down. They really don't know what's going on. They will do more blood tests, but those will take until next week to yield results.

Preliminary Pathology Report

The preliminary finding of the pathology report is that Tim has vasculitis, or swelling of the blood vessels in his brain. Unfortunately, vasculitis has many different causes and the treatments vary according to the suspected cause. The current suspects are 1) the leukemia, 2) a bacterial, viral or fungal infection in the brain, 3) a reaction to his medication or 4) a completely unrelated disease that causes vasculitis. The doctors are conducting additional blood tests, tests on the biopsy tissue and possibly additional CT scans to try to pinpoint the cause. In the meantime, they have put Tim on IV anti-viral medication just in case.

Tim has slept a good part of the day. The biopsy site continues to be painful. We've been told that by Friday most pain related to the biopsy should diminish. In the meantime, Tim has a spectacular black eye as fluid from the swelling around the biopsy site drains through his face.

Beata came and sat with Tim this evening and Jen and Julian watched the kids, so my mom and I went to see Sunshine Cleaning. It wasn't depressing, it wasn't uplifting, but I enjoyed it. Thanks, everybody.

Thanks also to Mary and Maureen for lending and fetching a book for me, to Pat for lunch and to Steve and Cecilia for the box of goodies.

Thanks, Fran for the cards. I haven't had the energy to go through them, yet.

If I missed thanking you, I apologize. I'm getting plenty of sleep, but I'm pretty emotionally exhausted at this point. If it's not urgent, I don't do it. If someone else can do it, I don't do it. Sometimes, I don't even do the necessary. I did get donuts for Brendan this morning, but that's special.

Room with a View

Tim is now in room 1566 of Prentice hospital. He is doing okay, although he's still in a lot of pain.

Many thanks to Julian and Christine for taking me out to lunch. Likewise to Wes for listening to me for an hour while I had a cup of coffee. I do try to leave the hospital for lunch and dinner. If you happen to be in the neighborhood around those times, give me a ring.

Tim Returning to Prentice Today

The neuro ICU staff expect Tim to be returned to Prentice and the transplant unit today. He is still in a lot of pain, which is to be expected. He also doesn't know where he is or what year it is, but that doesn't worry the neurologists too much at this point. Those were exactly the issues he was confused about before the surgery, so not much has changed.

Biopsy Day

Tim came through his biopsy okay. We won't have results for two days. He's spending the night in the ICU just to be safe.

OMG, Little Donut Seeds

Tim will have a brain biopsy sometime tomorrow. The doctors decided that it was important to know exactly what they are dealing with inside Tim's head. If it does turn out to be leukemia (stil their favorite option), his radiation treatments will be delayed for 10-14 days while the surgery site heals. The doctor decided that delaying radiation treatments was better than treating him incorrectly if the abnormalities are not cancer.


The polk dots on Tim's face will be used by neurosurgery to navigate around his brain during the biopsy tomorrow. The post title came from Theo. The boys came downtown with Grandma this afternoon to visit Daddy and go out to dinner with Mommy. Aparently, "OMG, little donut seeds!" is something Theo picked up on Facebook.



This is the view out Tim's new window. We are looking south down Fairbanks street at the corner of Fairbanks and Superior. Unfortunately, we lose the view (and the slightly larger room) once Tim is transferred to the neuro ICU.

Brain MRI Results Show Abnormalities

Tim's brain MRI came back showing abnormalities in his cerebrum. This could be from a number of sources. To list them in order from most likely to least likely: 1) Leukemia in the brain tissue 2) An infection in the brain tissue 3) Inflammation 4) other malignancy. Unfortunately, the MRI cannot tell the doctors which of these four is the cause of the abnormalities. They do believe that whatever is causing the changes in his brain is the cause of his mental confusion.

In order to try to determine the cause of the problem, the doctors have ordered a spinal tap and and a MRS (magnetic resonance spectroscopy - a fancy MRI) of his brain and his spine. If those tests are inconclusive, they will do a biopsy of some the affected brain tissue. The treatment for each of the possible causes is very different, so it is important to know what we're treating before we do anything.

They are moving Tim to a new room right by the nurses station later today. I believe we will be in 1587 by the end of the day. If Tim has the biopsy, we will be moving yet again. He'll spend one day in the neuro ICU, a couple in their step-down unit and then move back to the cancer center into a new room.

What's Up with Tim's Brain

We'll still trying to chase down why Tim is temporally and spatially challenged. The doctors say that physically all his tests are showing normal. They believe that Tim's confusion must be a reaction to one of his medications. Unfortunately, that's a really long list to sort through. Just to rule out anything physical, Tim has had a blood test, a spinal fluid test and a brain MRI. All those results aren't in yet, but the doctors expect them all to be negative. Not sure what the next step is, but they're working on it.

If Tim should happen to call you at unreasonable hours, tell him to call his wife. Then I can call his nurse to get him settled down. If he should call or email you at reasonable hours, don't try to make sense of anything he says. Just agree and check with me if you want the real story. He thinks he's been moved to any number of hospital rooms on different floors in different buildings. This is not true, but it is impossible to convince him otherwise. The social work says not to even try to set him straight.

Thanks for Thinking of Us

Just a few thank you's to take care of:

To my Aunt Ruth, for sending a funny card to Tim and a gift to me.
To Julian, for taking me out to lunch (and giving me the leftovers for dinner).
To Joyce and Julie for the cards.

Most especially, to my Mom for watching the kids and to my Dad for doing without my Mom.

Wow Bao and Water Tower

I went to Water Tower (a downtown shopping mall) for lunch today. I walked in and there was Wow Bao. What is Wow Bao? It's a restaurant that serves Thai Bao, filled dumplings. It had been on the news awhile ago, but since I'm never downtown, I'd forgotten all about it. I had a Mongolian Beef Bao and a teriyaki chicken rice bowl with Thai iced coffee for lunch. Very tasty.

After lunch, I decided to treat myself to a manicure at the Kiva salon inside Macy's. It was great to just sit there and let someone take care of me for a change. I picked up their card. Maybe I'll get over there again for a neck massage or something.

Photos from Transplant Day

Here's Tim in his hospital bed all hooked up and ready to go. There's actually no stem cells hanging on the IV pole in this picture, but just add another bag to the ones hanging there and that's all there was to see. He's hooked up to the BP machine that measured his blood pressure, pulse and blood oxygen levels every fifteen minutes. The nurse let me help by taking Tim's temperature every fifteen minutes.

This is the giant thermos bottle they used to transport Tim's stem cells from Feinberg to his room in Prentice. There's six inches of styrofoam attached to that black cap. The silver box on top of the blue cart is the hot water bath they melt the stem cell in. The stem cells are actually in these really tiny flat plastic bags that are then enclosed in a flat metal folder. The tech picked a folder out of the can (using an insulated mitt) and dropped it in the hot water bath. When it thawed a little, he removed the plastic bag from the folder and put it directly in the hot water bath until it thawed the rest of the way. The nurse hooked the stem cells up to an IV line and pumped them into Tim with a little extra saline for good measure. Since Tim had five bags, the whole show took and hour and half. The nurse, tech and I listened to Sharon Shanon (Irish music) and then "Song of Songs" by Steve Rashid, a friend and local jazz pianist. Tim slept except when we had to wake him up to take his temperature. He doesn't remember a thing.

Ten Things I Hate About Prentice Women's Hospital

1. Tim can't turn off the room lights from his hospital bed.
2. Most of the light switches are on the wall behind Tim's bed and therefore hard to reach.
3. The channel selection on the tv is not as good as Evanston Hospital. (No SciFi, No USA)
4. The sound quality on the tv is terrible.
5. There's no electrical outlets on the south wall of Tim's room.
6. The vanity tray sticks.
7. You can't open the room door all the way because the dirty laundry carts are in the way.
8. The couch is too narrow in the up position and in the way in the down position.
9. The room safe takes up too much room in the closet.
10. The doctors always leave ten minutes before I get there.

When am I?

The hospital makes it very difficult to keep any sense of time. The staff are in his room several times a night, which makes for a poor night's sleep. And taking naps during the day make it easy to get your days and nights confused. So Tim is continually surprised by what time it is. It's very frustrating for both of us.

Other than being confused about the time and his room number, Tim is doing well today. His termperature is back to normal, so he's gradually working the preservative out of his system. Unfortunately for Tim, Julie's stem cells were thin, so it took five bags for the transplant. That's more than twice as many as normal.

I didn't take my computer home last night and I forgot to bring my link cable to the hospital, so no pictures today. Maybe tomorrow.

Transplant Over, So Far, So Good

The transplant finished about thirty minutes ago. So far, things are okay. His blood pressure and temperature are up a little, but that's not an uncommon reaction to the preservative in the stem cells. Hopefully, they won't continue to climb. They are still monitoring his vitals frequently. I have a few pictures that I will upload tonight when I get home.

Getting Ready for Transplant

Tim is all set for his transplant. He's had his premeds and he looks all set to sleep through the whole procedure.

His sister Julie sent a card with the following message: My stem cells are going to kick your leukemia's butt. Tough on cancer, gentle on internal organs. Best of luck with your new immune system. Love, Julie.

Thanks, Julie.

Monkeying Around

I bought a monkey and put it on Tim's door today. He's a bright orange, which really doesn't come through in the picture at all. I hope it will make it easier for Tim to identify which room is his. If nothing else, monkey makes me smile every time I walk in the room.

No Morphine for Tim

We think we have discovered the source of Tim's confusion. On Saturday, they switched his pain meds to ocycontin. This makes Tim really loopy. He can't remember his room number or how to get around the floor. In fact, he can't remember a lot of things. They've taken him off the oxycontin. Unfortunately, it can take over a day for the last of it to leave his system. So I'm stuck with Loopy Tim for awhile.

Tomorrow is reinfusion day. Tim's blood counts are still pretty good, so he feels okay today. That will start to change in a few days as the chemo and radiation takes effect and his blood counts nosedive. Then we start to worry about infection and mouth sores and a whole host of other issues.

I'm finally learning my way around the system here. It's been a little tricky figuring out the best way to learn what I want to know. Hopefully, things will get better from here as far as that goes.

Holy Name Cathedral is just down the street from the hospital. For you out-of-towners, that's the Cardinal's church in Chicago. I haven't been down there, but they have a legion of volunteers that visit the hospital. The hospital chaplain has put us on the visitation list for the Ministers of Care from Holy Name. They have brought us communion for the last two days. They have a very long list, so they're really in and out with the communion. (It's speed communion.) Mary Deeley did a much nicer service when she brought us communion at Evanston. :) I'm not really into communion every day, but it's kinda nice to have a non-medical visitor. In fact, we let the hospital chaplain Jeannie and the hospital social worker visit just to have company. Actually, the social worker has been very helpful with suggestions on how to handle Loopy Tim.

I brought the boys down to visit Tim yesterday. They were really more interested in playing internet games on the big screen tv than visiting with Daddy. But they got to see the hospital and Tim got to see them. Visiting on school days isn't terribly practical with homework and scouts and all. My mom and brother drove down to pick them up. My brother helped my mom navigate her way here. Just because the GPS gives you a particular set of directions doesn't mean they're good directions. Particularly in the city. And then there's getting from the parking garage to the correct hospital building (it's a big hospital.) And then there's finding Tim's room in the hospital (also a challenge and defintely not one the GPS can help with.)

Well, I guess that's enough for now. Keep sending good thoughts our way. We appreciate it.

Last Chemo Today

Tim has had two of his three chemo treatments so far. The third treatment will be a little later this afternoon. They give him some very strong anti-nauseau medicine which puts him right to sleep. In fact, he never remembers the nurse actually hanging the chemo because he's asleep by then.

I don't know if it's the chemo or the anti-nauseau medicine, but the combination has Tim a little confused. He gets mixed up about dates and who's been in the room when. He also has trouble navigating the floor. This isn't terribly suprising, as the layout here is a little weird. So he's not really up to email at the moment.

Tomorrow will be his radiation treatment. Stem cell reinfusion is on Tuesday.

TTFN

Thanks for the prayer shawl!

Hi all. I just wanted to share my thanks with you all over everything you have done help me to and my family. In particular, the prayer shawl has been granted a place in my relatively crowded hospital room. It does a good job of keeping me warm!

Tim

Here is the view from Tim's hospital room. That's Lake Michigan between the buildings. There's a park down below with baseball diamonds. It's a little cold for ball today.















Here's Tim seated in the recliner trying to get Google Talk to work so we can video conference with the boys.















This is the other end of Tim's room with the tv. You can actually web serf on the tv, but the resolution is poor and the interface (mouse) is a little awkward. Tim's hoping he can get his computer working a little better. He can't get at his work email at the moment.

All Checked In (Mostly)

We are settling into the hospital today. Tim is in room 1562 in Prentice, which is actually the Women's Hospital here at Northwestern Memorial. The top two floors of Prentice are dedicated to oncology. Tim is in an east facing room on the fifteenth floor of the hospital. He actually has a lake view. I will try to post a picture of his view later. We are still waiting to meet the transplant nurse for our introducation to the transplant program. His first chemo treatment is scheduled for 3:00pm today.

Friday It Is

Got the word, Tim will go into the hospital Friday morning.

Just Waiting...

Tim saw the radiologist and the radiologist's two residents, his med student, his nurse and his physicist (yes, physicist) this morning. He's been examined and measured so they can give him the appropriate amount of radiation. He even has an appointment for 3:00pm next Monday to receive radiation.

So now we're just waiting for the transplant team to make the final decision. If they're going with the chemo/radiation regimen, Tim will go into the hospital this Friday. If the doctors decide to go the chemo only route, Tim will go into the hospital on Monday. We should know by tomorrow what the decision will be.

What's Up?

We've had a couple people ask us to post an update, so here's a brief post for those folks. The biopsy results came back negative, so that's good news. We met with Dr. Tallman on Friday. He discussed the possible complications with us. We meet with the radiologist on Monday (tomorrow). The exact date of Tim's hospitalization rests with the radiologist. We have asked to start as soon as possible. That will probably be this coming Friday, March 13. If the doctors make no changes to Tim's treatment plan, he will have three days of chemotherapy, one day of total body irradiation and then the stem cell transplant. Tim will probably be in the hospital for three to four weeks if all goes well. The follow up care is another month or so.

Don't expect too many posts over the next couple of weeks. You can send email to Tim or to me. We may answer, we may not. We do take phone calls, but please don't be offended if we have to hang up because the nurse or doctor walk in or we're just not in the mood to talk. Sometimes we're in the mood, mostly we're not. We definitely don't like talking about what's going on. Let us know what's happening in your life. It's got to be more interesting to us than what we're going through. Send us your funny story. We like those. Laughter is good medicine.