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.