Roller Coaster

Today was a roller coaster. After I wrote about Brian this morning and his fitful night, he fell asleep around 8:30 this morning until around 11:00. Then, he woke for about an hour and fell FAST asleep again for several hours. He has been in the recliner in the family room this entire time. The hospital bed was delivered around 11:30 and ready to go around noon or so. I wanted to get him into the bed which has an air mattress pad to alleviate the pressure points caused by Brian's dead weight (aka his right side). I tried a few times to wake him around 1:30. He could not be stirred. I tried again and again he would not even budge. I know that one thing we can expect with this brain tumor is that Brian will sleep more and more until he slips into a coma and most likely passes in his sleep. I became worried that he may be unresponsive forever. I don't know what to expect.



I gathered the support of a couple neighbors assuming that we would have to literally carry Brian to the living room where we have set up the hospital bed. Around 4:00, I broke down with my head in Brian's lap and sobbed, broken and defeated. Within a couple minutes, he woke up. He was very alert and I explained what was going on again. He was very confused. I sought the neighbor's offer for help and they came to get Brian into the wheelchair and into his bed while he was alert enough. He actually took a couple baby steps and was much more stable and steady than just a few hours prior. The transfer from the chair to the bed was easy and uneventful, thankfully. I had learned with Brian throughout the years that tears don't usually help me get my way. Unexpectedly and thankfully, this was not the case today, although no malice was intended.



For the next several hours, visits from Brian's family poured in as the word spread that Brian had taken a sudden turn for the worse. Brian was very alert and conversational. He made more sense than last night as he talked nonsense (albeit funny nonsense) with the shift changing to actual interest in events and people around him. When I sensed he was well cared for and surrounded by love and support and the boys were in the same situation, I went up to my bed and took a long nap.



When I woke, Brian was still alert and asking many questions. He not surprisingly doesn't remember the last 24 hours. He keeps asking where the bed came from and why he is in it. He is very confused as to the time of day and whether or not it is day or night. One minuted he proclaims how early it is and the next he proclaims how late it has become.



I have had to explain to him several times today that he is in the bed because he has been very sick the last day and can't really walk. That the cancer is affecting his balance and memory and hearing and thinking. He spent a small portion of the day angry. I think I won't explain that the cancer is causing this again. I think I will just explain that he has been having some problems and some balance issues. I don't know for sure. I will play that by ear. I don't want him angry. I want him peaceful. I think he is reliving the painful realization that there is nothing left to do and that he is dying over and over again. I think once is enough for that.



He fell asleep again around 10:00 pm. He has been sleeping for the last hour very peacefully. As soon as I finish writing this, I will sleep next to him on the trundle that we have placed in the living room. I want to ensure I get adequate rest.



I put the kids to bed tonight. I talked with them again about what is going on. Grant is more affected right now. He saw me crying earlier in the day and told me to stop crying. I told him I was just so very sad. He hugged me tightly and said, "Cry in my shoulder, Mommy" I sobbed in his shoulder for a while. He started to pull away and looked me straight in the eye saying, "If you need anything, just tell ME, and I will get it for you." I guess sometimes it is okay for the roles to reverse. He also said tonight when I put him to bed that he is sad and thinks it isn't fair for Jesus to take Daddy now. He wants Daddy to go when he is a Grandpa. I couldn't agree more.



My mom is staying with us until further notice. I have two aunts from St. Louis here tonight as well. We have offers pouring in from people as to what they can do. I will just remind everyone that they can send a personal note to Brian at this email address:
brianoneill1972@yahoo.com
and they can contact Kayre (pronounced Carrie) to see what can be done:
karyes@cmcousa.com
309-691-6930 (home)
309-922-9239 (cell)

Brian requested some McDonald's for dinner. He didn't eat much at all. He said it tasted awful. While some may agree that McDonald's often tastes awful, this is an unusual statement for Brian. Still, he has been able to identify and satisfy the urges to urinate and drink today. He has not vomited since last night.



The boys spent some time snuggling in Daddy's bed this evening with him watching some TV. It was cute and they all looked great, don't you think?



I will write more when I get a chance. We do not have a laptop. The desktop is RIGHT next to Brian right now. It makes me happy to be able to hear and watch him in a peaceful slumber AND write this at the same time.



KEEP BELIEVING