the word of the week is Jesus

Oh boy where do I begin.....Mom's tumor is in the place in the brain that controls her speech and memory. I you have had the chance to communicate with her since her tumor you understand what I mean. For those of you who have not had the opportunity let me explain. Memory wise she knows who we are but she can't remember when the last time she ate or what medication she has taken. As for the speech, she has to think about the words she wants to use before she speaks. She also inserts words in sentences where they don't belong or make sense in the sentence. She gets a word stuck in her head and uses that word literally 100's of times a day. So far the words have been velcro, nativity scene & cookie. The word of the week is Jesus. This is a phone conversation I had with Mom recently.

Me - Hi Mom what are you doing
Mom - Watching Jesus
Me - What is Jesus doing?
Mom - Nothing its just a rerun
* she was watching tv
Me - What is Dad doing?
Mom - He's outside riding the Jesus around in circles
* he was cutting the grass on his riding mower
Me - Is Jesus your new word?
Mom - Did I say Jesus?
Me - Yes Mom you said it several times
Mom - Jesus be quiet..do you want to go in the bedroom
* the dog was barking and the dog's name is Slinky not Jesus
Me - Mom you just called the dog Jesus
Mom - I did? I am really tired I am going to sleep now.
Me - That's a good idea I will talk to you tomorrow.

Every Wednesday Jeni and I go to Mom's after work and let Dad get out of the house for a while. Yesterday we decided to get Mom's Halloween decorations out and make her house festive. As we were pulling out the totes ( she must have had 10 totes of Halloween) I asked Mom what totes were for home and what ones were for your classroom? She said the totes on the floor by Jesus (Me) are the ones for the house. The ones by Mary (Jeni) are for school. I said Mom do you realize you just called me and Jeni Jesus and Mary? We were laughing so hard we were crying! So far we have been able to figure out what the Jesus means most of the time but we are stuck on what the "navy blue Jesus is that Dad left on". As I was telling Dan about this he said " I can't wait until the F word is the word of the week".

Mom had a few Dr appointments the last two weeks. Dr Potts ( Family Dr ) gave us a prescription for a wheelchair and walker. We got the wheelchair to keep in the car for outings and Jeni's sister in law had a very nice walker she is letting us use. Dr also gave her a prescription for Ameral. This is for sugar. We have been testing her sugar using Jeni's monitor because Jeni is a diabetic and has a spare. The Decadron ( steroid ) Mom is on is known to cause diabetes. Mom has been having trouble seeing and shaking ( which we thought was from the seizures but turned out to be from sugar ) her sugar has been so high that sometimes it doesn't even register on the machine. It has to be over 500 for it not to register. Normal levels are 70 - 100. Her feet are so swollen too. I can't even describe how big they are. The skin is pulled so tight it looks like its going to pop. She can't wear any shoes that she has in her closet. We are getting by barefoot or with slippers. The Dr looked at them Tuesday and said it was normal because of all the medication she is on. If they don't go down in a few days I am going to have to call him back. She is starting her second round of chemo beginning in October. This round is 5 days on 24 days off for 6 months. This an even higher dose that she was on before. In about a month the Dr will order and MRI and we will be able to see what the first round of chemo and radiation did to the tumor.

Hayden turned 13 last week. I now have two teenagers in the house. He also started running again. Cross country meets keep us pretty busy during the weekends. Hannah takes her CNA test next month. She wont be able to be an official CNA until she turns 18 but she will begin her first year of college with college credits.

Homecoming, Halloween, Thanksgiving are events we thought we would be celebrating without Mom this year. God sure works in mysterious ways. I will never figure it out but I am very thankful!

Finished with radiation!

Yesterday was Mom's last radiation treatment. Jeni & I wanted to surprise her and celebrate the occasion so we bought balloons and flowers and waited in the lobby for her to come out. Shortly after we arrived one of our favorite nurses Dot came out to see us and let us know "the radiation machine was broke " Now I am pretty sure that is one of the last things you want to hear as you are laying on the table awaiting the beams to penetrate your head. Dot said that the machine was warming up...which was progress from earlier but the technician was coming out to service it. The were rescheduling everyone for later that day but while Mom was there they wanted her to see the Dr one last time. Joanie, our other favorite nurse, came into the lobby and told us to come in the back and surprise her back there so everyone could see. We walked into her room and she was speechless. I think it took her a while to process what was going on. She was not expecting either one of us to be there and with the flowers and balloons she probably thought she won the Publishers Clearing House. After she processed what was happening the tears started flowing...even the staff got teary eyed! The Dr. came in and told us to make sure we take pictures and video of this monumental occasion. Joanie took a video and did a splendid narration of it and she also took pictures. I am so glad the Dr suggested it and that I always have my camera handy! ( That is thanks to a good friend's Mother Carol Buza...she was always taking pictures of us and when we would complain about it she would say "now girls in 25 years you will be glad we did this" ) You know what Carol, 25 years later I am so glad we did it and I am also so glad you taught me the value of a photo opportunity! After our little celebration we went through Mom's discharge instructions. She is weaning off the steroid for the next four weeks and having her vitamin D checked again. They also said that the last few radiation treatments are the strongest and she will have side effects from them for about the next 10 days. For about the last 2 weeks I have noticed that things are becoming more difficult for her. She is having trouble seeing, walking, she shakes a lot and can't climb stairs and has to have help to stand from a sitting position. I called Dr Potts last week and told him my concerns and that we have been testing her sugar and it has been between 360 - 480 everyday. He wanted to see her so I scheduled an appointment for today.



I have to have a difficult conversation with Dad today. Jeni and I both agree that it would be easier for all of us if we got a wheelchair for Mom. I really don't know how Dad will feel about it. Yesterday to conclude our celebration we went out for breakfast. When it was time to leave Mom couldn't stand up. Dad tried to help her but it was like her legs would not work so I took her under one arm and he took her under the other and got her almost standing but she could not support herself so we had to lower her down to the floor. Jeni supported her feet and Dad and I each took her under the arm and together we got her up. Mom felt terrible because she thought she embarrassed us. I walked her outside and told her nothing she did would ever embarrass us and we will always be there to help her! All day I found myself wondering what would have happened if it were just her and Dad at the restaurant.......Dad is strong but it took 3 of us to get her up. I want them to be able to leave the house and not have to worry about Mom falling. Apparently Jeni was thinking about it too and she called me at lunch time and we were both thinking the same thing. I am going to talk to Dad in a few hours...Wish me luck!



The kids had their first day of school yesterday. They both came home happy and neither had homework.....that's a good start to the school year. Hayden started cross country practice yesterday and his leg hurt really bad. Coach and Dr suggested he only run every other day. This is very hard for Hayden. He wants to run so badly but physically can't. Hannah had her last first day of school yesterday! Her next first day will be of college! This time next year I will be the Mother of a college student! OMG!

she still has all her hair!

Today is Dr day at the radiology. Actually today is the LAST Dr day for Mom. Although she has 3 more treatments she will not see the Dr weekly anymore. His plan is to see her in a few months and do another CT scan. Next week when she finishes her radiation she also finishes her chemo. She begins weaning off her steroid and will be completely off of it in about 30 days. After that she will be off both chemo and radiation for about a month. She will then begin a once a month chemo treatment for several months. It seems as though we will have a few month waiting period until we know if the chemo and radiation did their job.

Mom has become weaker over the last several days. The Dr said this is perfectly normal and told us to help her when she is walking and climbing. She also does not sleep. Mom was never a good sleeper but now she only sleeps 3 hours a night at the most. When she is not sleeping she is cleaning, organizing and re-arranging everything in her house. Every morning Dad wakes up to find closets cleaned, cupboards emptied and rooms re-arranged. She also spends time on the computer....perhaps some of you have received an e-mail or two. She has also become very impatient which is comical now but the first few day of it Dad, Jeni and I were running our asses off. The other morning she called me at 6am to have me come down and take the plants outside so she could water them "right now" she said I could come down in my pajamas if I wanted to. I told her I would come down and do it later in the day and she was not very pleased with me...now we all know that when she asks us to do something we do it now. We don't ask we just do it :)

Lately Mom has been coming up with all these crazy ideas....hence the above photo. She had Jeni order bald caps, plastic animal noses and crazy colored sun visor hats off the Internet for all the grand kids. She wants to get them all together for a picture wearing all that stuff. You may be asking yourself why?!? Well we don't know all we know is that it is something she wants and she wants it now. I told her that if the kids had to wear the bald caps she and Dad had to do it first!

It looks like Mom is going to be one that doesn't loose her hair. Its a good thing she didn't let Suzy shave it off when she wanted to! Speaking of Suzy....for those of you who know her please keep her in your prayers. Two weeks ago she had surgery to help with her gurd ( acid reflux ) there were complications and she is still in ICU in Flint. The surgery was supposed to be relatively simple with a one night stay at the hospital. I don't have to many more details her daughter Ali is in town and is keeping Mom and Dad informed. It sounds like she will be moved out of the ICU with in the next few days.

Mom and Dad are going camping this weekend. Mom is severely over packing and Dad is just shaking his head and putting everything she wants into the camper. I am hoping they will both be able to relax and enjoy so time with some of their very best friends.

My family is getting back to normal. Hayden gets his cast off tomorrow. To say that he is excited is a gross understatement. Hannah had her senior pictures taken yesterday, She had a great time and the pictures are beautiful I don't know how we are going to choose. School starts next week. It will be Hannah's last year in high school and Hayden will begin the 7th grade. Both will be running cross country this year actually Hannah has already had two meets. Hopefully September will be a nice calm month...................Famous last words.