Keep Calm and Carry On

Brendan asked me the other day if I still posted to the blog. I told him that I really didn't feel that we were in Leukemia Land any more, so I really didn't want to post to that blog anymore. He told me that he liked reading the posts, although he didn't read them very often.


We had been talking about whether or not the boys should keep a journal to help them through the feelings associated with Daddy's death. I will admit that I have enjoyed, most of the time, posting to this blog. I have enjoyed being connected to all of you and knowing that you cared enough to follow what was happening to our family. So I have decided to start a new blog. I don't know what all will go into the new blog, but I have given it a name, Keep Calm and Carry On, and an URL:

http://www.keepcalmandcarryon-jlw.blogspot.com/

You are welcome to join us there if you so choose. If not, thank you for sharing our journey to this point. We are sorry that we are embarking on a new, sadder journey without Tim in our lives. We will still need and welcome your love and support. Please keep in touch and keep us in your thoughts and prayers.

Memories of Tim

I would like to collect memories and stories of Tim to save for the boys as they grow up. If you have a special memory or story of Tim that you would be willing to share with us, please post it as a comment here or email to me at jnnfrwrd@gmail.com. The boys will not have the opportunity to know Tim as an adult. It is my hope that these collected stories will give them the chance to get to know their dad through your eyes.

Beautiful Memories

Thank you to everyone that joined the boys and me to say farewell to Tim this past Wednesday and Thursday. Donnellan Funeral Home put together a lovely video with pictures of Tim from childhood until his death. David Sutton, a local professional photographer, gave us permission to use two of the portraits from our recent photo session for Tim's prayer cards. They turned out just beautifully.

I want to say a particular thank you to the parents from Brendan's Cub Scout Den. The scouts from Brendan's den came together in uniform. Thank you so much for that tribute to Tim. We had visitors from both boys' schools, the Cub Scouts, the Boy Scouts, our church and many, many folks from Northwestern. I am sorry that I couldn't spend more time with each of you.

I am grateful beyond measure to everyone at the Sheil Catholic Center who helped make Thursday such a memorable day. I was completely blown away by the music. Angela Stramaglia and all the musicians that gave of their time and talents contributed to an atmosphere that went beyond good prayer (a Fr. Ken saying) to GREAT prayer. My special thanks to Fr. Tom for accepting the tough assignment of incorporating a remembrance of Tim into his homily. He managed to convey so well the many facets of Tim that made him so special. I also want to thank Teresa Corcoran and all the folks that helped her put together the reception after the service. Thank you for providing us with a time and space to share our memories of Tim as well as food to sustain us while we did so. After all, what is a Sheil event without food?

Most of all, however, I want to thank everyone that came to the funeral. I was so touched to see the chapel filled with all those people. Hearing the chapel resound with music as we began to sing the opening song is a memory that I will cherish forever. While the choir was beautiful, it was the full, active and conscious participation (another Fr. Ken saying) of everyone there that made Tim's funeral a moving celebration of his life. In my dark moments, I simply pull up that image in my mind and the memory of all the love and affection shown on that day comfort me.

Funeral Arrangements

There will be an open-casket visitation Wednesday, June 17, from 3:00pm until 8:00pm at Donnellan Funeral Home, 10045 Skokie Blvd in Skokie. There will be a brief prayer service at the conclusion of visitation lead by Fr. Bob Cary, the downtown Sheil chaplain who visited us often during Tim's final illness.

The funeral will be Thursday, June 18, at 11:00am, at the Sheil Catholic Center, 2110 Sheridan Road in Evanston. Tim's remains are being cremated and will be interred on a later date at a private ceremony. There will be a reception at Sheil following the funeral. Light refreshments will be served. Fr. Tom Franzman will preside assisted by Fr. Ken Simpson.

Information and an on-line guestbook can be viewed at www.donnellanfuneral.com.

Gone to God

Tim passed away a little before 1:00pm this afternoon. It was my great good fortune to be present. Tim and I were both blessed by the presence of our friend, Holly. Bless you, Holly, for being there to share that time with me. I will always be grateful for those moments.

Tim's passing was gentle and easy. He was there one minute and gone the next. This day has been long in coming and the struggle to get here has been hard on both Tim and me. I am glad that God smiled on us and gave us a quiet, peaceful end.

Tim's brother Steven and his sister Joyce and her family have been here since Thursday. It has been wonderful to have their presence here at home with the boys and at the hospital with me. Thank you so much.

Tim is at peace at last, which gives me a great sense of peace as well. This is a time of sorrow for us all, but today is a day of joy for me. Tim has gone to God and I rejoice that he no longer suffers.

Funeral arrangements are pending. They are being handled by Donnellan Family Funeral Home in Skokie, http://www.donnellanfuneral.com/.

Comfort in a Time of Sorrow

Thank you all for the expressions of sympathy that you have either emailed or left as comments or phoned or expressed in person. I am touched by everyone's care and concern. Thanks to everyone who has provided a sympathetic ear or shoulder or distraction as needed.

Tim is as comfortable as we can make him. He has had a number of visitors today. If you would like to come say goodbye, please feel free to do so. I am in and out depending on other obligations, so don't worry about being in the way. Don't come for Tim, come for yourself. He is not aware of anything that is happening.

Saying Goodbye

With great sorrow, I must tell you that Tim will not be with us much longer. He has really declined this week. The doctors all agree that he has steadily gotten worse over the last two weeks and is not going to recover. They have tried everything at their disposal. Unfortunately, it was not to be.

We are gradually removing all medications except those needed to keep Tim comfortable. Because of his continued low platelet count, the doctor does not expect Tim to survive even a week without the supportive care he has been receiving. He has been having trouble breathing today and has been running a fever. I have been told that he could go at any time.

I am in the middle of making the many decisions necessary at such a time. I will let you all know about plans for Tim's final farewell when they are set.

Thank you all for your continued prayers and support during this difficult time.

Jennifer

What Happened Today

I took the boys and my mother downtown today to see Tim. He looked quite a bit worse today. He was running a mild fever and was coughing a little. So they did a blood culture and ordered a chest x-ray. I don't know what the results of those tests were, but it could be that the pneumonia is back or that Tim has developed some other infection. Tim didn't appear to recognize me or the boys today. He was very restless, which in the past has been an indication that he's in pain. When his eyes were open, he just stared at whatever happend to be in his field of view. I am supposed to have another meeting with his doctors this week to discuss our options going forward.

When we got home, Theo took out his ripstick (a fancy skateboard) to go over to a friend's house. He fell off about half way down the block and landed on his ankle and the side of his foot. He said that it hurt quite a bit, although there wasn't a lot of swelling. Just to be on the safe side, I took him in for an x-ray. Theo fractured one of his metatarsals. Lucky for him, it's a minor break. He doesn't require a cast, just an ace bandage for support and a special stiff-soled shoe. He's allowed to walk on it and the doctor said that it should heal pretty quickly. Unfortunately, he will have to miss the rest of baseball and the soccer tournament in two weeks. Life is never dull.

What Happened Last Week

I was able to visit Tim in the hospital last week after my flu symptoms subsided. Tim had a mild case of pneumonia, which they successfully treated with anti-biotics. He also had a blood test come back positive for bacterial infection. All subsequent tests were negative, however, so they believe the one sample was probably contaminated. Tim developed something called BK virus. It's a common virus that doesn't cause any problems unless you are immune compromised. If you are immune compromised, it can be very painful, but it doesn't tend to be life threatening. His mental state did not improve, but the doctors still felt that watchful waiting was the best course.

Lack of anything positive to say was one reason I didn't post anything last week. The other is that we've been extremely busy at home. Thursday night was the PTA picnic, Friday night was the Boy Scout picnic and Cub Scout campfire, Saturday night was the church picnic and Sunday afternoon from noon until 5pm was the end of season soccer festival. Whew. Luckily, my mom flew in last Friday, which made it a lot easier to get everyone where they needed to go.

Remote Monitoring

I have not been able to visit Tim in the hospital this past week as I have the flu and I don't want to risk infecting anyone there. Beata has been visiting Tim for me. I have kept in touch with the nurses via phone. The tests ordered by the neurologist to check for underlying causes to Tim's encephalopathy have all come back negative. I have been told that Tim's condition has not changed from when I last saw him. His platelet numbers have been very low and continue to drop. This could be due to anything from side effects of his medication to the return of his leukemia. We just don't know at this time.

Meeting with Tim's Doctors

Last Thursday, while coming down with the flu, I had a meeting with Tim's oncologist and neurologist. I don't always get to see them as they are not responsible for Tim's day to day care while he is in the hospital. So this meeting was to touch base on where they felt Tim was in his treatment and where we should go from here.

Just to update everybody, Tim is in the hospital with acute Graft vs Host disease (GVH) in the bowels. He also has some form of encephalopathy (brain malfunction) from an unknown source.

The graft versus host disease is not responding to treatment as quickly as the doctors would like. However, Tim had not yet experienced any permanent organ damage from the GVH. Tim is in the middle of a one month course of treatment involving the drug Rituxan. If that treatment fails, there are other treatment avenues open to the doctors. At this time, his oncologist believes that they will be able to successfully treat the GVH.

The encephalopathy arose during Tim's induction chemotherapy. The doctors do not think that the induction chemo on its own is responsible for the encephalopathy but they cannot pinpoint the cause. Tim has received high-dose steroids several times which in the past have reversed some of the encephalopathy. However, lately he has returned to a state of extreme lethargy. He still responds to his name, he knows who I am, but he speaks very little and seldom opens his eyes. He had not left his bed for several days. His MRI's have changed very little over this entire time. He has also had EEGs that showed abnormal brain function but did not provide any sort of diagnostic information. In short, Tim has regressed in terms of his mental state, and the doctors don't know why or what to do about it. The neurologist has ordered additional tests to rule out viruses, fungal infections, metabolic disorders and other possible causes. The neurologist said that the damage may be reversible, but any improvement will occur over a significant period of time (months if not longer).

To summarize, the doctors believe that the best thing to do at the moment is to continue treating the GVH and rule out everything possible on the encephalopathy. They have said that if the GVH can be brought under control, Tim may be discharged to a skilled nursing facility able to provide whatever medical needs he still has at that time. We have several facilities open to us through our insurance. I have not begun to look at them yet.

They believe that it is not yet time to discuss withholding care from Tim. If his leukemia returns, he suffers permanent damage from the GVH or his mental status declines significantly, we will revisit this discussion. I have already informed the doctors that Tim would not want his life prolonged by artificial means if he is in a coma from which there is little or no hope of emergence. We are not anywhere near that point, thank God, and I hope we never will be. But these have been extremely dark days for me and I would be untruthful if I did not mention that Tim and I have had that discussion.

Please do not ask "How can we help?" I have so many decisions to make these days and that question just requires too much mental thought. That does not mean that your help is not needed, not wanted or not appreciated. The best thing to do is think about what you would want or need if you were in my shoes. Then decide what your circumstances permit you to do and make a concrete offer. I may reject your suggestion, or I may say, "Yes, please, that would be very helpful." Our needs change day to day, so a bad offer on one day may be a good offer on another day. I can and will change my mind frequently. I am relectant to ask for help because what is of the most assistance is either very time consuming, expensive or would involve you more intimately in our needs than is comfortable for you.

Please know that I am sensitive to the fact that Tim belongs to you as much as he belongs to me and the boys. We all want nothing more than for Tim to get better and come home. However, ours has been a rough and rocky road and that happy ending may not be ours to enjoy. I am doing my best to provide what I feel is needed physically and emotionally for Tim, the boys and myself both now and in the long term. I am very grateful for all the assistance we have received in all its forms and need all the help you can continue to give us.

Thank you and God bless you all.
Jennifer

As If That Weren't Enough

Brendan and I have tested posted for type A influenza.

Neurological Mystery

Tim's latest MRI showed no change in his brain. It's not good news that things aren't getting better and the doctors aren't sure at this point if they ever will. At least the MRI didn't show things getting worse. The doctors also ordered an EEG. The results reflect some abnormal brain activity, which is not unexpected, but not of any pattern to suggest a diagnosis. The neurologist stopped by today to do a lumbar puncture (spinal tap). He is ordering a bunch of tests on Tim's spinal fluid. They want to rule out leukemia in the fluid. They will also test for viruses and fungal infections. The doctor doesn't really expect any of these to be positive, since they've tested for all this before, but they need to be sure. The doctors upped Tim's steroid dose again, and he's slightly more alert, but still extremely lethargic. He lays in bed all day and never really becomes fully awake.

Long and Winding Road

The doctors told me today that GVH of the gut (as they call it) takes a long time to treat, as in several weeks. Tim will not be on solid food for at least a week. When his GVH symptoms have calmed down, they will gradually introduce solid food again. This new medication, Rituxan, is a once a week IV medication. One of the nurses told me that it can take several doses before you begin to see results.

The social worker is trying to arrange for a more intensive therapy for Tim than is available outpatient through our insurance. He can barely walk anymore and will need extensive therapy to return to a more normal level of mobility.

As if that weren't enough, his mental status has declined again. He slept almost all day, which is not a good sign. He is getting another MRI tonight to check on the vasculitis. I hope that we will hear from the neurologist tomorrow. If we're lucky, the vasculitis will not look worse and the neurologist will attribute his mental status to the problem of stabilizing his electrolyte/hormone/endocrine levels from the GVH. I dread to think what unlucky could be.

Trying Something New

Tim is not responding to the steroids as well as they would like. The doctors have started him on a new immunosuppressant. They have also confirmed the GVH in his digestive system. They have put him on IV nutrition for the next few days. This will give his digestive system a rest and allow the new medication to work. It is my understanding that he won't be sent home until he is back on solid food.

We are in the process of setting up physical and occupational therapy for Tim once he goes home. This last week of steroids has been very hard on him physically. His muscle strength has decreased dramatically.

Tim Still in Hospital

Tim has been receiving high dose steroids all week. By Tuesday, he was much more alert, which is a good sign. He still is confused, but mentally he's almost back to where he was last week. The doctors believe that Tim has Graft vs Host (GVH) in his skin, liver and digestive system. His rash has improved this week and his liver enzymes have also shown improvement. His digestive system is not responding as well. The doctors have put him on an oral steroid that is not as readily absorbed by the body. The theory is that these steroids make it to the intestines where they can combat the GVH. The doctors want the GVH symptoms and his alertness level to improve before they send him home. We will see what the beginning of next week brings.

Graft Vs Host Disease

Tim has developed Graft vs Host Disease (GVHD). This is a condition in which the donor immune system (the graft) attacks the patient (the host). This can manifest, in its mild form, as a skin rash. That is called GVH of the skin. You can also develop GVHD in the digestive system or the lungs, which is a more severe form of GVHD and can have serious complications. GVHD is not uncommon among transplant patients. In fact, the doctors like to see mild GVHD, because it means the new immune system is strong enough to take on any lingering cancer cell. But severe GVHD can be fatal if they don't get it under control.

Tim developed a skin rash last week. At his Wednesday appointment, the doctor put him on a steroid cream. The rash got worse over the weekend. Since the steroid cream isn't working, the doctors want to be more aggressive in their treatment. They have admitted Tim in order to administer IV steroids for the next several days. He is back up on the fifteenth floor of Prentice Hospital downtown.

Unfortunately, Tim's mental state has gotten worse with the GVHD. He sleeps almost all the time and hardly eats or drinks. The neurologist has ordered another MRI. He is hoping to determine if the problem is strictly GVHD or if the vasculitis has gotten worse. Luckily, the IV steroids that the oncologist wants to give Tim is the same treatment that the neurologist would prescribe. So, we wait and see how the rest of the week goes.

No Improvement in MRI

Tim had his repeat MRI today. It showed no improvement. The neurologist said it's possible that the vasculitis is slightly worse. Likewise, there's been no improvement in Tim's memory and cognitive reasoning. We are gradually removing Tim from the steroids, since they don't appear to be doing anything at this point. The neurologist isn't sure what to do next. He is going to consult his colleagues and Tim's oncologist before recommending a future course of treatment.

We see the oncologist this Wednesday.

On Our Own

My mom, bless her heart, flies home tomorrow. So we will be learning to manage on our own. The oncologist says Tim is doing really well in terms of the stem cell engraftment. We will be having labs done this week, but no doctor visits. The neurologist will still be seeing Tim for awhile. Tim has a repeat MRI scheduled for April 27.

Tim still doesn't drive and I'm not really comfortable leaving him home alone. So I'll be looking for folks to help out Sunday mornings so I can get to choir. I will also be looking for help in the evenings (mostly Wednesdays and Fridays) so I can get the kids to their sporting events. If you can help out in either of those areas, drop me a line and I'll put you on our schedule.

Tim at Home

Tim was discharged yesterday. We are still working out the details of his follow-up care. Lots of lab work and doctor visits.

Preparing to Come Home

The doctors are pleased with Tim's progress. Although he will still need a lot of follow up care with both the transplant doctors and the neurologist, the doctors believe that Tim can receive the rest of his care as an outpatient. So as soon as we line up the home health support, the medications, the doctor's appointments, etc, Tim will come home. Possibly as soon as tomorrow, certainly no later than Thursday.

Back on 15

After 24 hours of cardiac telemonitoring and an echocardiogram, the cardiologist decided that nothing is wrong with Tim's heart. He just occasionally has a low heart rate. So they moved him back to the transplant floor to room 1589.

They did discover a blood clot around the picc-line in his arm, so they removed it. The clot didn't totally block his blood vessel, so they are waiting to see if it dissolves naturally. They'd prefer not to give Tim blood thinners because of the vasculitis.

They also stopped one of his anti-rejection medications on Thursday to see if that is contributing to the confusion. He seemed a little better yesterday morning, but by Friday evening he was muddled again. The doctors said that it would take a few days to see any improvement if the drug was contributing to the confusion.

Tim's on a Field Trip

Tim had a low heart rate this morning (38). This concerned the doctors enough to bring in the cardiology team. The cardiologists don't think anything is wrong with Tim's heart, but just in case, they have moved him to 1683. This will enable them to monitor his heart activity for the next 24 hours. They have also ordered a bunch of tests for tomorrow, just to confirm that everything is okay.

On the confusion end of things, Tim occasionally has trouble recognizing me now. He is the topic of tomorrow's neurology seminar. Hopefully, all those brain doctors in one room might come up with something to help.

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.

So Long, Farewell, Auf Wiedersehen, Good Bye...

Tim's sister, Amy, returned home on Sunday after spending a week with us. We thank the many relatives that have spent time with us in the last three months. Especially those that came multiple times or stayed for more than a week. We couldn't have made it without you. We are now enjoying a brief respite from relatives. All four of us are enjoying being a nuclear family again.

Tim has completed his second course of arsenic. While we are still waiting for the February 19 biopsy results to make a final decision, it looks like Tim will begin the transplant process March 13. There are four days of chemotherapy and radiation prior to the transplant, which would occur on March 17. Erin go brach!

We are enjoying a break from daily trips to the hospital. In fact, we are enjoying a break from all things leukemia, including this blog. So see you next week.

Auto vs Allo

In April 2006, Tim had an autologous stem cell transplant. That meant the doctors harvested his own stem cells after he achieved remission. Then he was given high dose chemotherapy and his stem cells were returned to him. The hope, with an autologous stem cell transplant, is that the chemotherapy will kill any remaining leukemia cells and his bone marrow will "reset" and function correctly.

This time, Tim will receive an allogenic stem cell transplant. He will receive donor stem cells (Julie's) after his own immune system has been suppressed by a combination (we think) of lower dose chemotherapy and total body irradiation. In our meeting with Dr. Tallman yesterday, we learned that in an allogenic transplant, it is the donor immune system that is supposed to kill any remaining leukemia. The danger is that the donor immune system will also attack Tim's internal organs and kill him. To prevent that, Tim will receiving immuno-suppressants during the transplant and for up to a year afterward.

Dr. Tallman is still waiting on the bone biopsy of February 19 to make any final decisions regarding timing, but he now believes that the transplant will take place sometime in mid-March. We toured the transplant floor with Jenny, the coordinator, yesterday. It is a very nice facility, very bright, with large rooms. After they decide on the date, Tim will have his final pre-transplant tests and a couple of pre-transplant appointments with the transplant team downtown.

Yet Another Week Gone

We've completed week 4 of the second round of arsenic. Tim's blood numbers are stable. We've figured out how to handle the methotrexate. So even that goes down without problem, if not easily. We had a long talk with the psychologist today. Not fun or comfortable, but probably useful. Tim is hoping to get out and have a little fun this weekend. We're going to try to take in a movie with the boys. We may even get to church.

We both hope and dread the end of the arsenic. We aren't looking forward to the stem cell transplant except as the beginning of the end. We hope that everything will go well and that we'll return to a normal life on the other side. However, we have faced so many setbacks over the years that we also greatly fear that even if the transplant is successful, the leukemia will return. At the moment, we are trying very hard to enjoy the present as much as possible and let the future arrive in its own good time.

Sister Stephanie Serves Sick in Chicago

We have Tim's aunt with us this week. Sr. Stephanie is a Franciscan nun who has been running a retreat center in Abingdon, Virginia, for the last eight years. She took Tim to the hospital today, which gave me time to run a bunch of errands. Tim's blood numbers were pretty good yesterday. He's not neutropenic, so we're hoping to get to a movie this week. Tim's a little tired of not seeing anyplace but the cancer center or our house.

I spoke to the transplant coordinator at NMH today. She confirmed that Dr. Tallman is waiting for the results of the February 19 bone biopsy before deciding on the next step. So we won't know when the transplant will begin until the biopsy results are back. Since that takes a week, it will probably be March before we know where we go next.

Stem Cell Harvesting - Day 3

From Tim's sister Sharon:

Note from the stem cell buddy: You may wonder why this is the Day 3 message, after yesterday's message....turns out that Julie didn't donate yesterday, after all, despite how positive the email sounded. Her platelet count was too low, so there was some concern that she wouldn't have enough left for clotting after they take the catheter out of her neck. So, they sent her home to build up the platelets a bit and take some more neupogen and come back today. So, this morning, we knew she'd get hooked up for harvesting, the only question was for how long. Julie's message for today, starts below.....

Greetings from Northwestern Memorial Hospital!

I'm multi-tasking - harvesting stem cells and writing this email at the same time. We're doing a half collection today (10 liters). We started around 9:30 am and should be done with harvesting around Noon. Then it'll take about a half hour to get the catheter removed from my neck. The donation process will be over, Sharon and I will be free to go and I'll be heading home tomorrow.

My platelet count was 110 this morning before the harvesting began. So it's about the same as yesterday. But seems like the 3 shots of Neupogen last night are kicking in - it's estimated that over 5 million stem cells will be collected today (which would top my personal best from Tuesday of 4.37 million).

Thanks, Sharon, for being a great stem cell harvesting buddy. She's used to getting up early in the morning, she doesn't mind driving in snowy weather, and she's able to keep herself entertained during those stretches at the hospital where's there's nothing that needs doing (e.g., like when you're waiting for test results or catheter insertion or a visit from the Harvest Coordinator). Also, like she said in her email yesterday, she's taken lots of photos to document this experience.

Things have gone relatively smoothly. Hopefully this trend will continue into the transplant phase. Please continue to pray for and send positive energy to Tim, Jen, Theo, and Brendan.

Bye for now,
Julie

Stem Cell Update

From Tim's sister Sharon:

We're back at the hospital for day 2 of harvesting. For a 5' 3-1/2" person weighing a mere 125 lbs, Julie was a real trooper on day 1. While watching the inauguration (why is it that no one was really covering the parade--you know the marching bands part of the parade--anyway?), they sucked out lots of stem cells (over 4 million), and since she's in the neighborhood and on the Neupogen already and they like to have extra just in case (and for the research that they might decide to do that Julie signed the consent form for), she's getting hooked up again today for as much as her platelets will allow.

Tim said he'd settle for average stem cells, but Julie thought at least above average was needed. I added strong and good looking, probably cuz we're much closer to Lake Wobegon country here....

Julie is a model patient, from a patients' rights perspective--she makes it a point to learn everyone's name and calls them by it (very handy if your machine starts beeping ominously), and getting copies of everything she signs. (One of the radiology staff had to go in search of a copy machine.)

I got lots of photos of the harvesting machine, and Julie hooked up to the harvesting machine, and Julie watching the inauguration with tubes sticking out of the right side of her neck (her right side, not yours, looking at her). They won't all get posted, but the machine is pretty amazing, from a medical technology perspective--out goes the blood, through the tube and up and down and around and for a spin in the centrifuge (where the stem cells, being heavier than the rest of the blood parts, fall out). Then it keeps going through tubes and gets some saline added and some calcium and then it goes back into Julie. (Did I mention she has 2 tubes sticking out of her neck.)

The wireless access seems pretty good here, so Tim won't have to complain to the hospital IT staff. If we get bored--no inauguration to watch today--we'll send another message (not up to blogging or tweeting yet--to much to say for a tweet anyway.)

the stem cell donor and donor buddy are now signing off...
ttfn
Julie and sharon

Harvest Day

Today and tomorrow Julie will have her stem cells harvested. Julie arrived last Sunday. She and I spent last Tuesday downtown for her pre-donation physical. On Friday, she received word that all the tests results were fine. That night she started Neupogen injections to boost her stem cell production. Tim's sister Sharon arrived on Sunday. She is acting as Julie's chauffeur and errand runner while Julie is hooked up to the donation machine.

Meanwhile, Tim will continue to receive arsenic and methotrexate through the first week in February. His blood counts have improved to the point where he is no longer neutropenic. We now know why he got so ill from the methotrexate a week and a half ago. It turns out that the nurse withdrew 5ml of fluid instead of the usual 3ml. We (Tim, the nurses and I) are all relieved to have solved that mystery. Last Friday's dose went much better.

Harmonic Convergence

Every type of cancer has a different treatment schedule. It is very unusual to have treatment every day as Tim does. The nurses tell us that some days are very slow with very few patients. Then there are days like today when all the treatment schedules come together as a sort of grand harmonic convergence. Labs take forever, pharmacy takes forever and there aren't enough treatment rooms to go around. Tim is in a double room with another patient and I have been relegated to the most uncomfortable chair. So I have sought refuge in the lounge of the Women's Hospital.

Whew. This is the second time that I have typed all that. I enjoy posting from my phone, but it has it's drawbacks. Two finger typing on a touch screen is not the fastest way to type anything of any length. I also ran afoul of another "feature" of my phone. If you hold down the backspace key, it deletes your entire message. I was trying to back up several letters to correct a mistake and accidentally held the key a little too long. However, as I have plenty of time on my hands at the moment, retyping has killed a good twenty minutes.

We're supposed to get another three inches of snow tonight. I actually had to shovel the roof this morning. From the ground with a roof rake, so don't go thinking that I was climbing around on the roof. Just wading through a foot of snow with a thirty foot long rake, which was bad enough.

Hello, Goodbye

Today we said goodbye to Steven, who's been here for the past week. Many, many thanks to Steven for coming to help out. Many, many thanks to his family for letting him make his third trip to Chicago in as many months. Couldn't have done Christmas without you, Steve. Let me know what beer to buy to have on hand for your next trip.

We also said hello to Julie, Tim's stem-cell donor and sister. Julie will be here for almost two weeks. She has a whirlwind tour of the medical establishment scheduled for Tuesday, followed by a weekend of shots to encourage stem cell production, followed by harvesting next week on Tuesday and Wednesday.

The snow accumulation total was twelve inches. That's enough for awhile. We are looking forward to a high in the single digits later this week. Really missing our winter visit to Mom and Dad in sunny Florida. Maybe next year.

Why Tim hates methotrexate.

Today is one of those days that reinforces Tim's dislike of methotrexate. We did all the premeds exactly the same as last week. Only last week went well and today didn't. Luckily, things haven't been as bad as they could be. Tim's been sick a couple times, but he's resting now. I hope that if he gets a good nap, we'll be able to get home without too much trouble. His nurse agrees with my assessment, so now we wait. Posting from the hospital seemed a good way to pass the time.

Test Results

We got the results of Tim's latest bone biopsy the other day. Although he no longer has leukemia cells in his circulating blood and they aren't visible under the microscope in the bone marrow, there are still leukemia cells present. So Tim hasn't achieved remission yet. Likewise, his spinal fluid is still testing positive not for leukemia cells but for other cells that indicate leukemia is still present. We have spoken to Dr. Tallman, the Northwestern Memorial doctor, about these results. He said that it is not uncommon for more than one course of arsenic to be needed to achieve remission. So he is not planning on changing Tim's treatment. He is also pleased to see that the spinal fluid numbers are improving. However, Dr. Grinblatt, Tim's oncologist in Evanston, wants Tim to return to weekly methotrexate injections. So, not good news, but not bad news.

More fluffy snow today.

Guess What, It's Snowing!

Tim and I went to see the opthamalogist yesterday evening. He told us that Tim's cornea transplant was in good shape, just very dry. So he's adjusted Tim's medication schedule to help with that. What a relief!

Steve took Tim to the hospital today. So I had a normal afternoon at home with the boys. Brendan got to have a friend over. Theo got sole control of the HDTV upstairs. I got to do the laundry, make dinner and pay bills.

Tomorrow will be a busy day. Tim has chemo in Evanston in the morning and an appointment downtown in the late afternoon. Steve and the boys are going out for pizza, since Tim and I could be very late getting home. We've already talked to the chemo nurse about getting some extra anti-nausea medication to help with the drive. Hopefully, by that late in the afternoon, Northwestern will be all caught up and we won't have to wait too long. We won't hold our breath.

Oh, yeah, and there's very pretty, white, fluffy snow falling.

The Calm Before the Storm

When someone in your family has cancer, you have to enjoy the (relatively) good days, because bad days are sure to follow. We have been enjoying a good couple of days. Other than being extremely fatigued, Tim has felt a little more like his old self lately. He even hooked up his computer and downloaded his email. He is trying to get his gmail account to send mail directly to his phone, rather than getting lost in the mass of work email. Once he gets this working, I will let you know.

Brendan taught Tim and I to play rock band last night. I'd like to boast a bit and say that I was better at drums than Tim was. Tim will tell you that it's the chemo brain. I also think that actually having training on drums is a disadvantage. You have to connect the eye and hand and disconnect the ear, in my opinion. Since Tim's eyesight has been negatively affected by the chemo, this really doesn't help.

Theo got his very own phone for New Year's. So he's joined the texting generation. He's also started going out with his friends to the mall and to movies. I guess we should get used to living with a teenager in our house. He's even started to sleep like a teenage boy. I think I made him get out of bed at 10am the other day.

Tomorrow we start the consolidation round of arsenic. We are seeing fewer leukemia cells in his blood, so we hope that things are working. His platelet count is up, which is good. His hemoglobin count is low, hence the fatigue, but it is stable. Unfortunately, his white count is very low and the doctor doesn't know why. So Tim has to stay away from people, fresh fruit and flowers.

Tim's siblings (and aunt) have graciously volunteered to come out for a week or two at a time to provide us with help through the beginning of February. I am very grateful for the assistance. Knowing that there's someone at home for the boys no matter how long the hospital takes is a great stress reliever for me.

We will continue to enjoy this respite for however long it lasts. Hopefully, whenever the low comes, it won't be too bad. Tim is worried about the cornea transplant he had last summer. He said that the vision in that eye is quite bad. So we will be contacting the opthamalogist tomorrow. That is our biggest cloud at the moment. That and knowing that twenty five days of arsenic and two weeks of ATRA start again tomorrow. Soldiering on...

Happy New Year

Well, I can't say as it's been a happy new year so far. Hopefully, we will end better than we begin. We've been having a break from chemo and visits to the hospital. Tim has been feeling very run down. His hemoglobin count is very low, which accounts for a lot of that. His white blood cell count is also low, so we're hoping he doesn't catch the cold that's been running around the house. Tomorrow Tim has a methotrexate injection and a bone marrow biopsy. Next week we start arsenic again.

Thanks to my folks, who've been here the last two weeks. They've had enough winter and they're heading south again. Tim's brother Steven arrives Sunday for a week's stay.