Our continuing saga



This journal entry is emotional as this family is emotional..all the time. Today the boys went to Central Dupage Hospital. He was to get a blood test and his monthly IV. They did not know he was coming in for the IV. Why? I have no clue. So a two-three hour appt ended up being several hours and two crabby boys. Dan is at his wits trying to make Elliott feel better when we never get answers. Today Dr Salvi thinks the stuff happening in his foot may now be in his jaw, making eating very tricky. Thanks Gina for the book and for caring. I will read it but unless I can get him to actually eat, even this won't help. He has lost another 9 pounds but yet the doctor did not seem concerned? I know Dr Salvi and kinda find this one hard to take. I will be making a long list of questions for Monday at Children's. I offered to go along but Dan said don't miss any more work. And he has a hard time remembering or understanding what was said so I am going to have him take the list and maybe even tape record it so I know what was said. They are talking about doing an MRI Monday on his head to see the fluid in his jaw. I think the hope is that it is what is in his foot and they can hopefully make some progress. The good news is the liver numbers are improving. The bad news is his platelets have dropped a lot. Probably from the cyclosproine. We are having hospice start up again. Elliott crys at the drop of a hat. He is scared I am sure. And he is worried about money. He has really grown up lately. He did not want to eat too much because we are struggling. I told him that is mom and dad's job to worry. His only job is to get well. We all need answers, improvement and peace of mind. Something that never seems to happen. And don't get me started on the shape of this country....I ask for prayers for all of us. We are doing our very best but not sure what that means anymore. We need help in so many ways.I think we will start right at the top....


I hope that things turn around for you very soon. Things seemed to be going so well there for awhile. Our prayers are going out to you all from British Columbia, Canada.



I am sorry you are having so many set backs; hang on tight to the good reports you get on the liver & hopefully these other problems will resolve themselves soon. When we were told my DH had cancer of the spine last fall (remember how lucky we are that although the lesions are there it is not cancer YET but they think it is coming) the stress was almost unbearable & although we are breathing a little easier since his last MRI in July the thought of cancer coming is always on the back of our minds. With you it is on your mind every minute of the day. I know that you have been dealing with this for a very long time & although it is Elliott that is sick you are all suffering. My wish is that you will get some positive news really soon regarding these new problems & know that you are in my thoughts. Wishing the very best for all of you.