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