Update on Andrea from Mom

Dear family,
Chuck and I visited Andrea at OHSU yesterday and I wanted to give you my "picture" of her. She is essentially quadriplegic at this point: she has no ability to move her extremities and limited mobility of her head. Unfortunately, she also has a fair amount of pain--"everywhere" and it is very difficult to make her comfortable. She gets occasional spasms in her muscles; they give her a muscle relaxant for that and Mike has found that moving her legs gently though a limited range of motion gives her some relief. Her speech is extremely slow and unclear; Mike and Marilyn often have to have her spell what she is trying to say--obviously her mental capabilities are intact. She gets quite upset when she can't make herself understood. They still do not know what has caused this: they do say it is an autoimmune encephalitis--antibodies are attacking the cerebellum of her brain, but they don't know what triggered it or why it is occurring. She now has a gastrostomy tube (a tube through the wall of her abdomen into her stomach) and they are providing feedings and her medications through the tube. (Andrea also has a great deal of difficulty swallowing.) They have tried several treatments with no improvement--plamapharesis to remove antibodies, huge doses of steroids to try to reduce the inflammatory swelling in the cerebellum and IV administration of immune gamma globulin. The next step is to administer a dose of Cytoxan IV. Cytoxan (cyclophosphamide) is a chemotherapeutic drug that usually reduces the number of lymphocytes in the body. T-cell lymphocytes are what manufactures antibodies in our bodies and they are hopeful they can reduce the number of antibodies that are attacking her brain. This results of this treatment are not immediate; the physician said they could see some improvement in a couple of weeks, or it may take a month or more. And even, then, they are not sure it will cause a response. During this time she will be vulnerable to infections. The administration of the drug requires a great deal of preparation--large amounts of IV fluids before administration to protect the bladder from negative effects and they have found that it seems more successful when it is given in the evenings, so they plan to administer it this evening. One of the nurses from the oncology unit will come up to the neurology unit to administer the medication as they are certified in chemotherapy administration. At this point, the physicians seem stumped about anything else to do, so we certainly pray that this works. Mike is very weary: he has been with her almost 24/7 only going home an occasional day when Marilyn can stay with her. Emotionally, they both are on a very tight rope, as you can imagine. Marilyn continues to run her post office route and goes up every evening, so she is very weary, too. They all need our prayers! Nothing has been said definitely about her going home, but Mike and Marilyn are making plans to take her home when they discharge her. I will go up a couple of days a week so that Marilyn can continue to work some, but otherwise, Mike and Marilyn plan to care for her themselves. If you have any questions I'll be glad to try to answer them, or you can call Marilyn or Mike.
Love,
Jan