Life in Leukemia Land

Keep Calm and Carry On

2009-07-08T21:32:00.004-05:00

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

2009-07-08T21:01:00.002-05:00

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

2009-06-20T07:38:00.004-05:00

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

2009-06-16T05:20:00.003-05:00

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

2009-06-13T16:28:00.002-05:00

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

2009-06-12T18:54:00.002-05:00

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

2009-06-11T08:51:00.003-05:00

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

2009-06-09T20:19:00.003-05:00

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

2009-06-09T20:06:00.005-05:00

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

2009-05-27T20:19:00.002-05:00

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

2009-05-24T21:01:00.002-05:00

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

2009-05-23T20:58:00.001-05:00

Brendan and I have tested posted for type A influenza.

Neurological Mystery

2009-05-19T20:45:00.002-05:00

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

2009-05-14T21:15:00.002-05:00

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

2009-05-12T09:39:00.002-05:00

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

2009-05-09T21:04:00.004-05:00

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

2009-05-04T15:45:00.002-05:00

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

2009-04-27T19:09:00.004-05:00

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

2009-04-19T20:47:00.002-05:00

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

2009-04-08T10:47:00.002-05:00

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

2009-04-06T10:41:00.002-05:00

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

2009-04-04T06:49:00.002-05:00

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

2009-04-01T20:11:00.002-05:00

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

2009-03-30T20:26:00.002-05:00

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

2009-03-28T17:34:00.002-05:00

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

2009-03-27T14:33:00.002-05:00

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

2009-03-27T08:26:00.002-05:00

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

2009-03-26T19:49:00.003-05:00

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

2009-03-25T22:09:00.003-05:00

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

2009-03-25T07:39:00.002-05:00

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

2009-03-24T08:07:00.001-05:00

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

2009-03-23T19:23:00.001-05:00

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

2009-03-22T20:24:00.002-05:00

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

2009-03-21T15:47:00.002-05:00

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

2009-03-19T14:35:00.003-05:00

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

2009-03-19T14:32:00.002-05:00

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

2009-03-19T14:28:00.002-05:00

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

2009-03-19T09:55:00.002-05:00

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

2009-03-18T17:51:00.002-05:00

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?

2009-03-18T11:19:00.002-05:00

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

2009-03-17T17:01:00.001-05:00

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

2009-03-17T14:33:00.002-05:00

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

2009-03-16T20:49:00.001-05:00

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

2009-03-16T15:13:00.002-05:00

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

2009-03-15T13:24:00.003-05:00

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!

2009-03-14T16:52:00.005-05:00

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

2009-03-13T20:31:00.005-05:00

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)

2009-03-13T12:55:00.002-05:00

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

2009-03-10T13:20:00.001-05:00

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

Just Waiting...

2009-03-09T13:53:00.002-05:00

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?

2009-03-08T14:17:00.003-05:00

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...

2009-02-11T15:56:00.002-06:00

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

2009-02-05T17:08:00.003-06:00

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

2009-01-30T20:33:00.002-06:00

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

2009-01-27T20:57:00.003-06:00

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

2009-01-22T12:43:00.002-06:00

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

2009-01-22T08:39:00.002-06:00

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

2009-01-20T13:47:00.002-06:00

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

2009-01-12T14:42:00.001-06:00

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

2009-01-11T21:18:00.004-06:00

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.

2009-01-09T16:39:00.001-06:00

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

2009-01-09T08:23:00.003-06:00

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!

2009-01-06T15:56:00.003-06:00

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

2009-01-04T10:46:00.002-06:00

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

2009-01-01T14:18:00.002-06:00

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.

Changing of the Guard

2008-12-21T17:25:00.002-06:00

Tim's sister Amy left us on Tuesday. Her daughter had hoped that Amy could make a snowman and take a picture of it. However, it warmed up just as Amy arrived and didn't snow again until the day she left. She did make it home safely, if a little later than originally planned. Thanks, Amy, for your visit. Thanks to Amy's family for managing without Mommy for a week.

My parents arrived Wednesday afternoon. They've been real troopers. Mom's been doing laundry, grocery shopping and making Christmas cookies. Dad's done some electrical repairs and lots of snow shoveling, as we've had two snow storms since they've been here.

My parents will stay until January 1. After that, things are still up in the air. Tim's sister Sharon is coming out the third week in January. His other siblings have expressed a willingness to come out again, but there are no definitive travel plans at this time. I had hoped that by this point in Tim's treatment we'd be able to manage on our own. However, we spend so much time at the hospital every single day, that keeping the rest of the house and the kids going on my own is just overwhelming. So I appreciate the help very much. Many people have offered to come and help, but coordinating outside help is just another chore that I really don't have the time or energy to do. Having a relative staying here means that things can happen whether I'm home or not.

Good News, Bad News

2008-12-21T15:00:00.004-06:00

I apologize for the lack of posts this past week. I've just been totally exhausted. Last week has been full of ups and downs. Here's a little summary of our week:

On Tuesday, we got four inches of lovely, white, fluffy snow that practically guaranteed us a white Christmas. Unfortunately, it all fell while we were trying to drive home from the hospital. A fifteen minute trip took half an hour. Tim gets carsick very easily these days. We made it all the way home, but not into the house before he got sick.

On Wednesday, we had to drive downtown to see Dr. T. We were running a little late. Unfortunately, the hospital was running later. Tim was scheduled for a blood draw and a fifteen minute doctor consultation. It took us two hours to do what should have taken forty-five minutes at most. We then had to drive back up to Evanston for his chemo. Did I mention that Tim gets carsick very easily these days?

On a brighter note, Dr. T suggested that Tim take a two week break from the ATRA. Since this drug gives Tim a headache and makes him nauseous, this was a very welcome suggestion. We also got word that HMO Illinois has approved going out of network to Northwestern Memorial and Dr. T for the stem cell transplant. So that's one worry gone. Dr. T also told us that Julie looks like the best candidate for Tim's stem cell donor.

On Thursday, there was a mix up with Tim's chemo. The arsenic was infused over one hour instead of two. Luckily, this mix up didn't cause Tim any problems.

On Friday, Tim had arsenic and methotrexate. Unfortunately, there wasn't a bed available when we arrived at the cancer center. They like to do the methotrexate in a bed, because it's easier for the nurses. It's also better for Tim if he has a bad reaction to the methotrexate. So we started the arsenic in one treatment room and moved to another when a bed became available. I don't know if it was the premeds or the lack of ATRA, but Tim was actually able to walk to the car after the methotrexate for the first time since before Thanksgiving.

We now have a break from chemo until after the New Year. Tim has to go in on December 26 for blood tests, to make sure that everything is going well. On January 2, Tim will have more blood tests, a methotrexate injection and a bone marrow biopsy. We resume arsenic infusions on January 5.

More Christmas Elves

2008-12-14T16:18:00.002-06:00

Many thanks to all the children at the Sheil School of Religion. They made Tim a couple of great big get well cards. They also made a very, very, VERY long red and green paper chain. We have hung the chain in our living room. It makes a great Christmas decoration. Thank You! We also thank the parents of the Sheil School of Religion for their very generous assistance.

My Christmas Elves

2008-12-12T18:16:00.002-06:00

Tim's sister Amy has been with us since Tuesday. She has taken Julie's place as chief cook and bottle washer. Yesterday, Tim's brother Steven joined us. Today I took advantage of all the help and rearranged the living room and dining room to make space for the Christmas tree. We brought up the train track and Steven got the train running while Tim and I were at the hospital this afternoon. I'll put out the Christmas village this weekend and we'll trim the tree. Many thanks to Steve and Amy for being so much help and such willing workers.

Treatment Schedule Update

2008-12-12T17:52:00.003-06:00

I've had a couple of folks ask about Tim's treatment schedule, so I'll just post a brief update. Tim gets an infusion (IV) of arsenic Monday through Friday. He is scheduled to have a total of 25 doses. Today's dose was number twenty. After the 25 doses, he gets two weeks off followed by another 25 doses of arsenic. Then he'll have the stem cell transplant. This all assumes that the weekly blood tests and the bone marrow biopsy scheduled for January 2 don't cause the doctors to change the treatment plan.

Tim is also receiving methotrexate injections to treat the cancer in his spinal fluid. These injections give him very bad headaches and make him nauseous. We have found a combination of medications that make the symptoms less severe, but Tim still hates methotrexate days. He was receiving methotrexate twice a week. We have cut back to once a week and anticipate cutting back to every other week soon. Tim is scheduled to have a lumbar MRI on Monday to make sure that the cancer hasn't don't any additional damage to his spinal cord.

Overall, Tim is feeling a little better than he was around Thanksgiving. That makes things both better and worse. He is not in as much pain, which makes everyone feel better. However, he is now alert enough to think about how awful this is. We describe it as feeling better medically but not mentally.

A Houseful of Help

2008-12-07T19:25:00.002-06:00

We have had Tim's sister Julie with us since Wednesday. She's been a good sport about doing the dishes and the laundry and the kid wrangling. We also had Tim's sister Joyce and her husband Dave with us this weekend. Joyce, Dave, Julie and the kids took the train downtown to the Christkindlemart on Saturday. Today Joyce and Dave braved single digit windchill to take the boys sledding. (Julie declined the offer to go sledding.) Joyce, Dave and Julie also got a little Christmas shopping in at the mall this afternoon, which gave Tim and I some space to ourselves. Our house was beginning to feel very small with so many extra people in it.

Tim's new drug routine seems to be doing a good job of managing his side effects. He was able to get to church this morning with Joyce and Dave. Being able to attend mass with our community meant a lot to both of us. Thanks, Joyce, Dave and Julie, for making that possible.

Another Week Gone

2008-12-05T19:30:00.002-06:00

Well, we've made it through another week of arsenic. We've even survived another methotrexate injection. We're making progress with Tim's medication. The palliative care specialist has given us an entire range of dosing levels for Tim's pain medication to take care of everything from mild pain to horrible awful pain. So we're pretty stable for the moment. Now we just hope that all the chemotherapy is doing its job.

Northwestern Memorial has begun the process of getting approval for the stem cell transplant. There appears to be some confusion about whether or not the insurance company will cover the cost of typing Julie and Amy, Tim's two candidate donors. Hopefully, this will all be straightened out soon. Unfortunately, it probably won't be fixed before Julie leaves us next week.

Happy Feet

2008-12-02T19:29:00.003-06:00

The psychologist at the cancer center likes to remind care givers of the importance of "me time" for the care giver. Today I had the opportunity for a little of that. Tim got started with his chemotherapy and clearly planned on napping through it. For a change, I didn't need to see the oncologist or the palliative care specialist or anybody else. So I went into downtown Evanston for a little retail therapy. This summer I discovered Earth brand shoes. They have a negative heel. That means your toes are higher than your heel. It is supposed to stretch out the tendons in the back of your legs and improve your posture. All I know is that I love these shoes. Unfortunately, the pair of sandals I bought this summer weren't going to get me through a Chicago winter. Equally unfortunately, the only styles in the stores this fall were ones that just didn't appeal to me. They were all ballet flats and Mary Janes. Just not my style at all. But today they finally had something that I liked. In fact, they had two somethings. I bought a pair of boots and a pair of shoes that look like tennis shoes but are really slip on shoes with ultra-lightweight microfiber uppers. My feet are so happy!

Monday, Monday

2008-12-01T19:52:00.003-06:00

We had our usual messed up Monday. I say messed up because our personal schedule gets messed up on Monday. On Mondays, we try to leave for the hospital at noon, because Tim has to have an EKG before they will start the arsenic for the week. Arsenic can do bad things to your heart rhythms, so the EKG makes sure that it's safe to give Tim more arsenic. Leaving the house at noon means that lunch time gets moved around. Tim's food schedule is very important, because a lot of his medication needs to be taken with food. Today we didn't finish lunch before we left. We got behind on some medication and as a result, Tim had a pretty poor afternoon. The EKG was normal, Tim had his arsenic, the rest of his blood tests came back pretty decent, so he didn't need any extra medication. We had another consult with the pain doctor. Now if I can just get Tim to eat something tonight, things may start to look up.

Help is on the Way

2008-11-29T20:02:00.003-06:00

One of the things that has made this last week so hard is the lack of live-in help. I really thought that we could manage on our own. However, it's been very stressful coordinating after school care for the boys when our days at the hospital don't end until 5:30pm or 6:00pm instead of the 4:30pm that we though would be more average. Starting next week, though, that will change. Tim's sister Julie arrives next Wednesday for week. Then his sister Amy will be here for a week. My parents have the last two weeks of the year. I sincerely hope and pray that by then the chemotherapy will have moved beyond the truly awful phase into the merely unpleasant.

I continue to remain grateful to the school, church and cub scout friends that have stepped up in our time of need. Just to let you know, our freezer is full at the moment, so we don't need any more frozen dinners. Desserts, however, are another story. :) Playdates or other activities for the boys are also very useful, especially on weekends.

Unless I call you, I prefer to arrange such assistance by email. I am less prone to making mistakes that way. I am also less likely to snap at you just because you happened to call at a bad time. (I apologize to the two people who caught me making dinner this week. Hunger makes me cranky.) I often forget to check the answering machine when we get home. If I'm in a bad mood, I occasionally forget on purpose. So email is definitely the way to go.

If I don't respond to your email (or your phone message), I'm either a) too busy, b) too tired or c) don't need any help at the moment but am too busy or too tired to write and tell you so without writing something that might be a) rude or b) insulting or c) both. If I do respond, I don't have to worry about being caught in a game of phone tag. So email is the way to go.

If you have an urgent request, call my cell phone. If you don't have my cell phone number and you would like it, send me an email and I'll mail it to you. If you are willing to be a sympathetic ear at odd moments, send me your cell phone number. I have been know to go through the contact list on my phone looking for someone to talk to about my day.

One Month

2008-11-29T19:48:00.003-06:00

It's now been one month since we started fighting leukemia again. This last month has been very hard on both Tim and I. The effects of the chemotherapy have been just awful. Tim has spent the majority of the last month in a great deal of pain. The pain has been bad enough to keep him awake at night and make moving around a nightmare. When he hasn't been in pain, he's been doped to the point of incoherence. As hard as it was for me to watch Tim be in such pain, the loopiness from the morphine he's on now is just as bad. He sleeps most of the time. He is unable to follow or remember a conversation. He shakes so bad that he has difficulty doing anything with his hands. His balance is also somewhat suspect.

I know that Tim is tired of being sick. It is so hard to know that we are only at the start of this journey. If the first month is this bad, how much worse will it get? The hours at the hospital have been longer than we hoped. I am extremely tired of spending hours in an uncomfortable chair waiting for doctors or nurses or test results. I don't dare leave because every time I do, I miss an important decision or something gets forgotten or goes wrong.

It has been a bad week to end a bad month. I want to believe that things will turn around soon, but I'm having a hard time having any faith that things will get better.

Reasons To Be Thankful

2008-11-27T09:59:00.001-06:00

If you can see, if you can walk,
If you can hear when others talk,
If you have food, enough to eat,
But skip expensive cuts of meat,
If you've a coat for when it's cold,
Though maybe out of style or old,
If you have friends, the kind who care,
If you have health, though only fair,
And have some cash, but not a bank full,
You've got ample reason to be thankful.

Attributed to SCC Boy Scout Council.
Published in Baloo's Bugle,
an on-line newsletter for Cub Scout Leaders.

Coming Home Today

2008-11-26T10:20:00.002-06:00

Tim is feeling better this morning. The MS Contin seems to be taking care of his pain. We will be at the hospital for his daily arsenic treatment and then we'll go home. We also hope to meet with a palliative care (pain) specialist today. We will still have to come in on Thanksgiving for arsenic.

A Couple of Days in the Clink

2008-11-25T21:52:00.005-06:00

Just a brief post to let you all know that Tim is in the hospital as of this evening. Today's methotrexate shot made him violently ill. The doctor decided to keep him overnight so he can get IV fluids. The current plan is for Tim to stay through Thanksgiving Day. He'll get his arsenic, which we were going to have to do in-patient anyway, and then go home Thursday evening. We will spend then next two days working to better manage his side effects.

Sunday in the Suburbs

2008-11-23T15:49:00.003-06:00

Tim's brother Steven and his dad, Phil, are in town this weekend. Having a little extra help around the house has been a big help. I was able to get to church in time to sing in the choir for the first time in several weeks. It made me feel very good to make music with my friends for our community. Some of our friends at church have asked how they could help out. Today I asked for volunteers to spend Sunday morning with Tim so that I could sing in the choir. It's a big sacrifice, since I need someone here from 8:00am until 11:30am. I really appreciate it, though, because singing at church is one of my favorite things to do. I didn't realize how much I'd missed it until I was back there this morning.

This has been a very nice day off, courtesy of my brother-in-law and father-in-law. After spending the morning at church, I spent the afternoon on the couch watching the Chicago Bears run all over the St. Louis Rams. (Go, Bears!) Meanwhile, my in-laws were out in the cold raking what is hopefully the last of the leaves into the street. The boys are at a birthday party this afternoon, with transportation generously provided by friends, so I am not refereeing sibling spats. I don't even have to make dinner, as Uncle Steven is making us his famous (he says) baked ziti. I'm sure that there is a huge list of things I could be doing, but I am just as sure that I'm not going to do them. I am going to enjoy the time off, as I don't know when I'll get any more until my parents show up just before Christmas.

Downtown with Dr. T

2008-11-22T08:44:00.002-06:00

We drove downtown yesterday morning to meet with Dr. T at Northwestern Memorial. Dr. T is an expert in APL. We anticipate that Tim will have his allogenic bone marrow transplant at Northwestern Memorial. Dr. T told us that while it is very rare to relapse as Tim has, it is still possible for Tim to achieve a complete and lasting remission this time around. Dr. T and Dr. G (our Evanston oncologist) have agreed on the following course of treatment: five weeks of Monday through Friday arsenic treatments, two weeks off, five additional weeks of Monday through Friday arsenic treatments followed by an allogenic stem cell transplant.

So, if you're keeping track, that means three things. First, we don't have to go into the hospital on weekends for arsenic treatment. (Yeah!) Second, Tim's two weeks off are the week of Christmas and the week of New Year's. (Double Yeah!) Third, the stem cell transplant will probably take place in mid-February. (Sigh.)

We saw Dr. G yesterday afternoon. He told us that Tim's spinal fluid appears to be responding to the methotrexate treatments. He believes that it will be possible to cut back to one methotrexate treatment a week. Tim had steriods before yesterday's methotrexate injection. That seemed to help a lot with his nauseau. We are also cutting back on his ATRA dose to see if that will help with his headaches. We are still working on the nerve pain. Dr. T said to go back to the neurologist for suggestions.

If at First You Don't Succeed

2008-11-20T22:18:00.002-06:00

Today was the first day that we were able to use Tim's port for the chemotherapy. This was supposed to make everything so much easier. Of course, it didn't. The nurse hooked up the chemotherapy and about fifteen minutes later Tim complained that the port hurt. It turns out that the nurse didn't have the needle completely inserted into the port and the chemotherapy was not going into the vein but under his skin. Fortunately, the nurse was able to squeeze out a lot of the fluid that had bubbled under his skin and the arsenic is not toxic to your tissues the way that many chemotherapy agents are. Unfortunately, she wasn't able to properly insert the needle on her second try, either. She ended up paging the nurse who helped install the port. He came up with an extra long needle and after a couple more sticks, they were finally able to get the arsenic going.

Sometimes we just feel cursed. It seems like every complication known to modern medicine, and a few that aren't, crop up at every turn. It's never as simple or as pain free as the doctors tells us it's going to be. Forgive me if I'm just a bit skeptical about medical advice at this point.

Cleanliness is Next to Godliness

2008-11-20T22:08:00.003-06:00

I'm nominating my brother and his wife for sainthood. They paid for a cleaning service to come clean my house yesterday. It is so nice to have an entirely clean house. And I didn't have to do it! It made me very happy for everything to be clean. Thanks, bro!

Our chaplain came to visit today. So we really had cleanliness next to godliness today. We had a nice visit. I had made cranberry orange bread the night before, so we had tea and fruit bread. Tim even came out and sat on the couch for awhile.

So, all in all, a pleasant interlude in the midst of all our trouble.

Is it Friday Yet?

2008-11-18T21:03:00.005-06:00

It's been a long week and it's only Tuesday. We have had a very busy two days. Fortunately, we have had Aunt Mary here to help out. We've had flu shots, dentist appointments, piano lessons, saxaphone lessons, homework, playdates, cub scouts, laundry, groceries and errands. Oh, yes, and two doses of arsenic and one of methotrexate.

Tim is still feeling very poorly. The oncologist tells us that the Lyrica may take up to a week to have any effect on the nerve pain. In the meantime, we have changed to a stronger narcotic. It makes Tim drowsy and woozy, but at this point, that is preferable to the pain. We are just hoping that we can hold on through this bad patch and that things will improve soon. It takes awhile for the chemotherapy to really do its thing, so we just have to grit our teeth and endure.

I am very tired. The last two days have just been go, go, go. It's been great to have Mary here to help out. Thank you to Mary's family for doing without Mom for a few days. In addition to childcare, laundry and dishes, Mary's helped me with a couple around the house projects. It's nice to be able to cross those off my list.

Tim will continue to have arsenic every day this week. We are waiting on test results to see if he will need another methotrexate injection this week. We are also waiting on final word about the need for arsenic on Saturday and Sunday. We meet the Northwestern Memorial specialist on Friday, so we'll see what he has to say. We don't expect to hear anything different, as Dr. G. has been consulting with Dr. T, the NMH guy, all along.

Gurgle, Gurgle

2008-11-15T13:10:00.002-06:00

Tim had another methotrexate treatment yesterday. The nurses press on the Ommaya several times before and after injecting the methotrexate. This forces the resevoir to empty and refill, thus encouraging the drug to mix throughout the spinal fluid. Tim said that pressing on the Ommaya makes a gurgling sound inside his head - in stereo. Of course, there's nothing to hear on the outside.

Tim's been having a bad week. His skin has been extremely sensitive. Just having his clothes rub against his skin hurts. It's a lot like the shingles pain. We are increasing the amount of Lyrica that he is taking and hope that will help. He also has his typical post-methotrexate spinal headache, nausea and fatigue. I expect he'll spend most of the weekend on the couch.

Thank Goodness for Good Friends

2008-11-12T09:49:00.003-06:00

Thank you, thank you, THANK YOU to everyone that has stepped forward to help out. To the Cub Scout parents who have stepped in to take over running Pack 85. To the friends that have sheltered my children at all hours. To the girlfriends that took me out drinking. To the family that have offered support in many different ways. Thank you for being there.

Coming in to Port

2008-11-12T09:33:00.003-06:00

Tim had his third methotrexate injection yesterday. Dr. G. is busy training anyone who is willing how to use the Ommaya. (It is ridiculously easy.) Unfortunately, the injections make him nauseous. We learned this morning to take compazine an hour before taking the ATRA if he's nauseous. Dr. G. withdrew 4ml of spinal fluid to check for cancer. The test results will determine whether or not he receives another methotrexate injection on Friday.

Tim is scheduled to receive a port-o-cath tomorrow. This is a device a lot like his Ommaya, only the resevoirs (Tim will have two) will be under the skin on his chest and the cathethers will go into the vein leading to his heart. Tim was never a candidate for a port before because his platelet counts were always too low to permit the surgery. We think the port will be a lot nicer than the picc and central line that he's used in the past. It can stay in for as long as necessary and is completely under the skin. So we don't have to worry about getting it wet. Tim can even go swimming once the initial scar has healed.

We have an appointment for next week to pull the staples out of his head. We also have an appointment with the specialist at Northwestern Memorial on the day before Thanksgiving. We did get one bit of good news yesterday. Tim's platelet counts were actually up from last Friday. That would seem to indicate that the ATRA is doing it's job. It also deceases the likelihood of Tim needed to be hospitalized at this time.

I have had some feedback from friends and relatives on the blog. They have been largely positive. I told the therapist at Kellogg that it was my new toy. Writing everything down gets it out of my system and helps me "shut the box."

Telemarketer Tango

2008-11-11T15:12:00.004-06:00

The phone rang at 9:00am this morning. We were running late and I should have just let the answering machine get it. I was afraid it was one of the kid's friends calling to cancel a playdate, so I picked it up. It was a women from a cancer charity. Here is a brief synopsis of our call:

Cancer Charity (CC): I am sure that there must be someone in your life who has been touched by cancer.

Me: As a matter of fact, my husband's leukemia has relapsed and we are on our way to the hospital right now for chemotherapy.

CC: Oh, I'm sorry. Well, then you know the importance...

Me: Are you trying to ask me for money?

CC: No, what we are asking you to do is mail fifteen letters...

Me: You're kidding, right? Do you have any idea what I'm going through right now? Do you know how much I have to do?

I was absolutely flabbergasted that this women insisted on sticking to her telemarketing script after I told her I was taking my husband for chemotherapy that morning! There should be a note that says if you're calling for a cancer charity and the person on the other end of the phone says that someone in the household is currently fighting cancer, express your best wishes and hang up!

Arsenic and Old ATRA

2008-11-10T13:10:00.003-06:00

On Friday, November 7, we got the word that the Ommaya was ready for use. So Dr. G. came up to Tim's hospital room and put it through its paces. It's certainly a lot easier to get an injection in your scalp than in the base of the spine. Tim will be getting methotrexate injections until the CNS leukemia is gone. We don't know how long that will take.

After the chemotherapy shot, they sent us home. Later that evening was when Dr. G. called with the bone marrow biopsy results. He told Tim that he should start taking ATRA right away. ATRA, all-trans retinoic acid, is a vitamin A derivitive that is a specific treatment for APL. It forces the leukemia cells to mature so that they can be targeted by regular chemotherapy and die. So I drove back to the hospital to pick up all the ATRA they could spare. I will get more today (Monday.) God bless HMO Illinois. ATRA is a VERY expensive drug, but the HMO covers it just like any other prescription. Remind me to blog on healthcare. We have decided opinions on health care reform.

Tim hates the ATRA. It's five pills twice a day. They have to be taken on a full stomach or Tim gets sick. ATRA gives Tim a headache and the hiccups. But just after breakfast and just after dinner, Tim takes the ATRA. Next Monday, Tim will start receiving arsenic again. That requires a two-hour IV infusion. A two hour IV usually translates into three hours at the hospital. That's a lot of time staring at the walls in the Kellogg Center. We just hope that this round of arsenic will go a little smoother than last time and won't last as long.

Riding the Rollercoaster in Leukemia Land

2008-11-09T16:34:00.005-06:00

When we spoke to the oncologist on November 5, he told us that it is EXTREMELY unusual to see a systemic relapse after a stem cell transplant. The CNS relapse is more common, but still rare. In order to know just what we were dealing with, Dr. G. order more tests on Tim's blood. One of these tests, done on Tim's blood, is called a PCR test. (No, I don't remember what PCR stands for, other than something with chromosomes.) Anyway, the first PCR test results came back negative. For one whole day, we thought that maybe things weren't so bad. Maybe the leukemia was just in the CNS and Tim wouldn't need a stem cell transplant. However, on Friday, Dr. G. performed a bone marrow biopsy. They found leukemia cells in the bone marrow. So Tim does, indeed, have a systemic relapse and will need a stem cell transplant.

That's life in leukemia land for you. One day things are looking up. You feel good or you have the time to do something you really enjoy. You can actually go for hours without feeling totally miserable. Unfortunately, you always come crashing down again at some point. You feel that things will never get better. You'll never get enough sleep, you'll never get caught up on the chores at home or that you (or your spouse) will never get better. The trick is not to get stuck at the bottom of the hill. You can't be happy all the time, but you also don't want to be crying in the pit of despair, either.

Tim and I call it "closing the box." We try to put all the worries and bad feelings away in a little box, put the lid on it and go do other things. Watching funny movies or sports on tv is a good way to close the box. One of the best ways to close the box is to get out of the house or the hospital and do something. Since that usually means you don't feel very sick on those days, it's easier to close the box on those days. Tim is much better at closing the box than I am. His box has a tighter lock, too. Mine never seems to shut completely and I'm always peeking at it to see if bad things are leaking out.

People are always asking me to open my box and tell them how things are going. Sometimes, if I've finally managed to close it, I don't want to open it. So don't be surprised if I tell you that I don't want to talk about how things are going or I don't answer your email or phone call. That's what this blog is for: a way for you to open my box and look inside without my being there.

Ommaya, Take Two

2008-11-09T16:26:00.002-06:00

Thursday morning we got the bad news that the Ommaya was not located in the proper spot. So Tim was scheduled for a second surgery to reinstall the Ommaya. Unfortunately, they made this decision before Tim had breakfast. This meant that he didn't get breakfast, since they told us that he could be going into surgery as early as 3pm on Thursday, November 6. Tim was not a happy camper. Yesterday, he missed lunch and dinner because the Ommaya surgery wasn't completed until after the hospital kitchen closed for the night. He did have a cold turkey sandwich at 9PM, but that just doesn't satisfay if you haven't eaten all day.

This time the surgery was successful. And Tim was back in his hospital room before the kitchen closed for the night. But by that point, he'd been given a lot of medication on a very empty stomach. This made him too nauseous to eat dinner. Just one of life's little injustices in leukemia land.

Go to Jail, Go Directly to Jail

2008-11-09T16:12:00.003-06:00

On November 5, we went to Kellogg for what was supposed to be a short (by chemotherapy standards) visit. When Tim goes for treatment, the first step is always a blood draw. When you have leukemia, the complete blood count (CBC) can determine the course of your treatment and your life. Tim's CBC was not good. His platelet count had dropped below 90. This was a major concern. It seemed to indicate that not only was the leukemia in Tim's central nervous system, but that it had returned to his circulating blood as well.

Dr. G. contacted the neurosurgeon, Dr. C. They decided that Tim should have the Ommaya inserted that day, before his platelet counts dropped to a level that made surgery dangerous. So for the third time in four years, we went to the hospital one morning and I was the only one that went home.

Tim was admitted to Evanston Hospital on Wednesday afternoon. We returned to 5 Searle South, the same floor where Tim had already spent more than nine weeks as an inpatient. The only good thing about being a frequent visitor was that the staff already knows us and we know them. It is very comforting to have nurses and PCTs (patient care technicians) that know both of us. We are very grateful to all of the hospital staff for their care and their good wishes.

We are also grateful to our good friend Beata, who dropped what she was doing to come stay with the boys on Wednesday. She fed them dinner and stayed with them late that night and the next while I was at the hospital.

People always ask, "How to do manage?" The answer is: we manage because we have a lot of friends. Thank you, everyone, for all your help, no matter how small. I will write more about how to help in a later post.

Spinal Headaches

2008-11-09T15:58:00.003-06:00

It turns out that if you have two spinal taps in three days and have over 10 ml of spinal fluid removed, you are subject to spinal headaches. Tim had four days of spinal headaches to endure after the Halloween treatment. He was a trooper, though. In spite of his spinal headache, he took Brendan Trick-or-Treating on Friday night. He acted as a Boy Scout merit badge counsellor for Theo's scout troop on Saturday. Then he gave up and spent Sunday and Monday on the couch pushing the fluids (the only cure for spinal headaches other than time.)

Tuesday was election day. Tim took the morning off to vote (yeah Obama!) He had planned to go into work Tuesday afternoon, but his headache came back while we were at the polling place. So it was back to the couch. Tuesday was a beautiful day, sunny and seventy. In November. In Chicago! So I took advantage of the weather to rake the leaves. Tim got off the couch long enough to teach me how to mow the lawn.

It was a great relief to get the yard cleaned up. One of the hard things about fighting an illness is the loss of control. You can plan to mow the yard, but treatment or it's side effects can totally derail those plans. I am always perpetually behind on the simple household chores like housecleaning, laundry, yard work, paying the bills, etc. That does nothing for my stress levels. The first year Tim had leukemia, he got very sick before mowing the lawn. At least this time, I wouldn't have that problem.

Trick or Treat at Kellogg Cancer Care Center

2008-11-09T15:38:00.003-06:00

Tim's oncologist, Dr. G., isn't one to let grass grow under his patients. He had us come in the very next day (October 31) to begin treatment. At this point, all we knew was that Tim had leukemia cells in his spinal fluid. While leukemia is a cancer of the blood, it sometimes happens that the cancer cells will cross the blood-brain barrier and take up residence in the central nervous system.

Treatment for a CNS relapse, as it is called, is intrathecal chemotherapy. That means having chemotherapy injected directly into the spinal fluid. This can be done one of two ways. The first involves doing a lumber puncture and injecting the chemotherapy into the base of the spine. The patient then lays on his back with his head below his feet to encourage the drugs to spread evenly throughout the spinal fluid. This is what Tim had done on Halloween.

The second method for intrathecal chemotherapy is to insert an Ommaya reservoir under the scalp and inject the chemotherapy into the reservoir. An Ommaya reservoir (named for Dr. Ommaya, the inventor), is a plastic pouch attached to a catheter. The catheter is threaded into the ventricles (spaces) in the brain through a small hole in the skull. The reservoir sits just under the scalp and is full of the patient's spinal fluid. The oncologist can both inject chemotherapy into the Ommaya and withdraw spinal fluid for analysis.

When we left on Halloween, Tim had an appointment to meet a neurosurgeon to discuss installation of an Ommaya reservoir. We also had an appointment for November 5 for a third lumbar puncture and a second intrathecal chemotherapy treatment.

How We Found Ourselves Back in Leukemia Land

2008-11-09T15:24:00.005-06:00

Tim began experience nerve pain in his face in August of 2008. This was not unusual because Tim suffered from shingles in October 2007. The shingles affected his eye and resulted in a cornea transplant in June 2008. So tingling facial nerves are a part of his daily life. But this new pain was not controlled by his medications.

We visited a neurologist in September. The neurologist ordered a brain MRI, a cervical spine MRI, a glucose tolerance test and a lumbar puncture (spinal tap). The first three tests all came back negative, which just left the lumbar puncture. Tim had the lumbar puncture on October 29. On October 30, Tim got a phone call from his oncologist telling us that leukemia cells had been found in the spinal fluid. And just like that, we were back in leukemia land.

A Brief History of Prior Trips to Leukemia Land

2008-11-09T15:13:00.003-06:00

Tim was originally diagnosed with Acute Promylocytic Leukemia (APL) on October 21, 2005. He was treated with a combination of all-trans retinoic acid and danorubicin. His condition was so acute at diagnosis that he was immediately hospitalized. Tim spent about three weeks in the hospital, coming home just before Thanksgiving in 2005. He received outpatient chemotherapy in December 2005 and January 2006, returning to work in late February 2006.

Tim relapsed late in October 2006. He was once again hospitalized for three weeks due to the severity of his condition. Treatment for relasped APL is daily arsenic therapy. Tim needed 50 doses of arsenic to send his leukemia into remission. The final part of his treatment was an autologous stem cell transplant. The transplant, in which Tim received his own stem cells back after massive chemotherapy, occurred in April 2007. The transplant meant another three week stay in the hospital.

The stem cell transplant was supposed to be the end of our trip to leukemia land. Unfortunately, that was not to be.

Welcome to our Life in Leukemia Land

2008-11-09T15:06:00.002-06:00

Welcome to Round 3 with Acute Promylocytic Leukemia. Round 1 was October 2005 through February 2006. Round 2 was October 2006 through May 2007 and ended with an autologous stem cell transplant. Round 3 began on October 30, 2008. This round will end with an allogenic stem cell transplant in 2009.

In the past, we have communicated with friends and family via email. This time we're going to try using this blog to keep everyone up to date on Tim's progress. This is the first venture into the blogosphere for both of us, so please be patient with us as we work out the kinks.