Keep Calm and Carry On

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


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

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

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

Memories of Tim

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

Beautiful Memories

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

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

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

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

Funeral Arrangements

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

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

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

Gone to God

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

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

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

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

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

Comfort in a Time of Sorrow

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

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

Saying Goodbye

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

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

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

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

Jennifer

What Happened Today

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

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

What Happened Last Week

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

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

Remote Monitoring

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

Meeting with Tim's Doctors

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

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

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

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

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

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

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

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

Thank you and God bless you all.
Jennifer

As If That Weren't Enough

Brendan and I have tested posted for type A influenza.

Neurological Mystery

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

Long and Winding Road

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

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

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

Trying Something New

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

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

Tim Still in Hospital

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

Graft Vs Host Disease

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

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

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

No Improvement in MRI

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

We see the oncologist this Wednesday.

On Our Own

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

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

Tim at Home

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