The Good, the Bad, and the Ugly!!

The Bad: Well, yesterday was one of my absolute worst days yet. I believe it was building for several days. I had the stomach bug two days after Christmas. I got better but the nausea hung on for about 3 days. I also was on track reading my bible through in a year until mom got sick. Since then, I have been stuck in Luke! So on Thursday night I sat down, feeling bad, tired, and frustrated with the kids and thought I would finish the last 3 chapters in Luke!!! Well the phone rang a couple of times, the kids interrupted several as well as mom (Steve was at Jiu-Jitsu). The last time the phone rang, it was Jana. Well to make a long story short I was rude to Jana. I hurt her feelings and probably really ticked off Brad (and maybe his parents). I later called Jana back to apologize and we talked. So I went to bed.

Friday, I got everyone up 2 hours before we needed to leave to have "extra" time and not be late. 3 hours later I am frantic and pulling mom out of the house. I had to take the kids to the doctors office with us because I no longer had time to drop them off. Fortunately, I had packed Hogan a lunch and had that with us. We got to the doc's office only 5 minutes late. The waiting room was packed. We could not even all sit together! The kids did great for the first hour. Okay the second, and terrible the third! By the time we got to a room, Hogan was all but climbing the walls. I had tried to take him out to the lobby of the building and let him run some steam off, but Sarah got up to see what we were doing and mom tried to get coffee (banned for her right now due to water and caffeine). So we sent back in and attempted to sit!

The Good: The doctor said that mom was still in the top 5%. He said she had no signs of thrush and asked if I was doing mouth washes. I told him no, just lots of yogurt. I have not told him about her Mannatech supplements yet, but think I will next week. He said she was not a girl with "that far away look in her eyes" and that radiation patients do not pick up magazines, not even to figet with and mom always looks at the mags while waiting, commenting on what she looks at and what little she reads. We are off the steroids now and doing okay. We have gone back a few weeks as far as confusion and memory goes (my estimation), but he did not comment much on that yet. I want another week or two before we decide whether or not to restart steroids. He even mentioned that we may go on a rotating chemo regimen sooner that 6 months. But I hope that we get the MRI before that decision is made and will state so if he talks about changing it. Her electrolytes are great so far and her white count is still within low but normal range!

The Ugly: This would be me again!!! While sitting in the waiting room (twittling my thumbs as previously explained above!), I remembered that we had to turn in a lot of paperwork to the hospital for a discount since mom will be self pay. This was the last day and I left the paperwork at home. So I dash home after the appointment, send everyone to the restroom, Sarah next door and ask mom to get in the car while I use the restroom. Well mom returns inside shortly with the mail. I freaked. I don't allow her to cross the road alone, because she does not look for cars right now. It's like she focuses on the mailbox and nothing else exists. Also she just tosses the mail wherever! Bills, orders, checks, whatever - wherever! So I remind her that she can not cross the road right now and the reason, and she looks at me and says "Well that would be easier than dying of a brain tumor." I was shocked. Later I asked her if she felt like she was dying and she said no. So I am puzzled at how often she thinks things like this. So, I fussed at Jana, and now mom twice today.

I called Steve on the way to the hospital and met him in a commuter parking lot and passed off Hogan. Mom and I went to the hospital, parked in the parking deck, and made our way to the information desk. (I had tried to deliver this stuff earlier and they were supposedly closed. I had called the number on the business card stapled to the application several times and not gotten an answer!) They made me call the operator to find another name I found at the very bottom of the page. Another lady by the same first name answered the connection. I asked for the after lady and she said she no longer worked there (different name still than that of the business card). She wanted to know what I needed so I told her. She said they were at a different address. I asked where. She asked where I was! (very frustrating conversation so far). I told her and she said just across the street. I told her I was on my way. She then said they closed at 4:30 and I had better hurry. I said well I have 30 minutes don't you think I can make it across the street in that amount of time? She then told me in no uncertain terms it was 4:15. I asked if someone could wait for me. She said no. She stated the doors automatically lock at 4:30. I asked if I could knock and have them open the door. Again "NO"! So at this point I yell into the phone. "Fine! I will try to make it across the street in time, but I will be dragging my mother who has had brain surgery, radiation and is on chemo behind me!!!!!" I then graciously slam the phone down, grab mom by the hand and holler hurry mom, hurry! We race to the parking deck I try to decide whether we can walk or drive faster. (Mom's gait is a little funny and she tires quickly.) We go to the car and get in line to leave the deck. I wait for none trying to back out of their spaces regardless of how many cars have already passed them. We squeal across the road. I jump out and run to the door yelling come on mom come on!! She does come but slowly. We get in the office and while I am talking to the lady mom has to go to the restroom. The lady gives her directions and she takes off down the hall! I am now standing in the doorway with my head stuck in the hallway watching mom, talking to this lady almost contorted into a pretzel! The lady stamps the paperwork with the days date and I relax a little. Mom is in the restroom and now she has part of the stomach bug and we are in Little Rock! She stays in the restroom until well after everyone has left and the automatic doors take over! I wonder if we can even get out of the building! I call and cancel our dinner plans and wait. She finally is ready to leave and fortunately I have a plastic bag in the car! Now, I race home! We get in the door and I turn everyone over to Steve and collapse! But I get a chance to fuss at Hogan before bedtime because he took a nap an is now completely recharged and I am still nauseated and I am trying to lay down with him to put him to sleep. The bed is bouncing and wiggling with his energy and my stomach and nerves are rolling. Finally, an hour or so later he is asleep! I get up and Sarah is awake. She now wants me to lay down with her. (Product of letting your kids sleep in your bed for years!) I just can't. She pokes her lip out and I finally say NO, just go to bed you are old enough to fall asleep by yourself! Finally, Steve calms her and puts her to bed and she is asleep in no time! But now it is quite and I have time to reflect on myself. Not a pretty site I'm afraid. Time for a little more prayer!

Miracle Note: Jana's friend's little girl is doing great. All the leukemia test came back negative (PRAISE GOD!!) They decided it must just be a bad virus and she responded to the blood transfusions, her blood counts came up, she came off isolation, went into a regular room and home the next day!! You all must be righteous prayers because your prayers are availing much!!!!! Also, Steve's step mom is home and doing well. She will be off work for 6 weeks and recovery will be hard, but no septicemia!!! (I'll blog more later for those who don't know.)

No More Steroids!

Today is mom's first day without a dose of steroids. She has had some increase in dizziness and possibly more confusion (sometimes it is hard to judge). She also has a cold that has lingered for about 2 weeks. She went to see her doctor yesterday and started on antibiotics and decongestant med. We will see if this decreases her dizziness. Tomorrow we will see Dr. Baltz and he will decide whether or not we start taking more steroids. I really hope he gives us a few days to try staying off the steroids. I don't want her to feel bad, but they have so many side effects.

We had a very nice Christmas. Sunday morning Anna and Brian took mom to her church and we took the kids to our church. That afternoon Jana, Brad and Emily came into town. Then Anna, Brian and their kids all came over. Our neighbor provided a wonderful meal and we had more than enough to eat. Then we had a very special visitor stop by on a very busy night. The kids were so excited to see Santa. They were really impressed when he knew where each child now lived since they had all moved recently. He brought presents as well. (We have some wonderful neighbors!) On Christmas morning we had a late brunch when Anna and Brian got their kids off to their grandma's house. We had lots of presents to open and more food to eat! We baked a pumpkin pie with homemade crust and all. We did not do much of anything but visit and watch the kids play.

The stomach bug has been running around our family now and we are praying mom does not get it! Anna had a bad case of it but mine was very mild. I secluded myself in our room for about 24 hours! I hope it is stopped in it,s tracks!

I will try to blog again after we see Dr. Baltz tomorrow. I think he will once again be impressed with how well mom is doing.

We have a new prayer request though and this time not for us. One of Jana's best friends has an almost 2 year old little girl. She began walking funny Christmas Eve. Woke up fine on Christmas day until that evening when she stopped using her left side almost all together. They took her to the ER and they sent her to Children's for sever acute anemia. The put her in ICU and in isolation and took a bone marrow sample to rule out leukemia. They are very scared and worried for their precious little girl. We are praying that it will not be a life threatening disease as they are telling them right now. Please join us in lifting this little one up in prayer!

"Some times we get a miracle!"

We visited our oncologist again Friday and mom impressed him again! He said he was extremely impressed with how well mom was doing. He told her is has to be in the top 3 percent! He also said in all of his 15 years of practice he has never seen anyone do as well after radiation as she is doing!!! This was music to my ears. I almost cried in the room! He told her that now he wanted her walking everyday! That she should be up and moving a lot. She should not be lying around unless she is sleeping. I said we were already there and he said he believed it. He went on and on at how well she is doing. Praise God!!!!!!

She has reduced her steroids to 1/3 of her highest (longest) dose!!!! This is often on of the most difficult things for people to do. Your body becomes dependent on the steroid and acts up if you take them off too fast. Some people can't come off them at all because of the damage from the tumor itself. With mom, I can't even tell we are weaning her off! I just cut the dose every 4 days and we go on our way. We decrease again tomorrow and are scheduled to stop it on Thursday! I was afraid she would have weakness again, increased memory loss and confusion or even a seizure, but we had one of the best weeks we have had in a long time. She seems a little more lucid each day. I pray she will continue to improve daily.

Well, I guess you can tell I am excited. I think I have rambled a bit. But we are very happy for her right now and we really enjoy our good moments since there have been so many bad! We are getting ready for our Christmas celebration. Steve and I have been working like mad trying to get the house ready. We are cleaning up and cleaning our mom's place now. It is a big undertaking! We have some dear neighbors and friends that are providing our big Christmas dinner! They have been like angels! (Same ones that decorated for us!) This has helped us tremendously. We also still have people cooking for us on occasion. This is just incredible to me! You all have truly bless our family! It has let us concentrate more on mom and all the daunting tasks we are doing.

We pray you will all have a very Merry Christmas! Don't forget to pray for Josh too!!!!!

Nothing Short of Miraculous!!!!

Miracle #1 Friday we saw the oncologist after finishing our last radiation treatment that morning. He was so pleased with how well she was doing physically. He told her most people are wiped out physically at this stage! He said she was "nothing short of miraculous at this point." He told her she was in the "top 10 % of her class and top 5%"in how her wound looks! This is answer to all everyone's prayers. She is still active (takes only a nap or two a day). Walks well enough to go to the track, shopping etc. She has not developed yeast infections or stomach ulcers. The past few days even her memory has been a little bit better! She knows it is December and even the correct day on occasion. She can recall that Josh is at Boot Camp now some of the time. She seems a little less anxious over all as well.

Now we need to pray about the next MRI which will be sometime in Jan or Feb. We are praying there will be no new tumors and shrinkage of the old tumor. (Sometimes tumors can actually grow even with all the treatments.)

Miracle #2 Our neighbor and friend came over Saturday and did all the Christmas decorating while we were gone to Rosebud for Steve's family's Christmas. They put up a huge tree, decorated the mantle and rest of the living room. They hung wreaths, set up and entire village on the TV, put candles everywhere and left cookies! It was such a blessing to come in and have everything so beautiful. We were wondering when we were going to find the time to do all this. The teenage son even spent several hours in the play loft organizing the toys. (The kids had unloaded their toys from the boxes and scattered them all over the place. You could not even walk up there!) We have been so blessed with such wonderful people that have given so much. Everyone has done so many thing for us. It is very humbling and comforting at the same time. I can not thank all of you enough, from the rides to CARTI, meals, baby and mommy sitting, cards, notes, phone calls and visits. And most important the PRAYERS you say for my mom so often, THANK YOU!!!! THANK YOU!!!!! THANK YOU!!!!!!!!!

Miracle #3 It is Christmas!!!!!!!!!!!!!!!!!!!!!!!!

He makes me hungry!

Mom said the funniest thing to me today. We were on our way back from CARTI this morning when she saw a billboard with Peter Miller's picture on it (he is a local "Big Rig' Attorney). She said "Well there's Peter Miller! He makes me hungry!" I have not idea where this came from but it made us laugh and laugh! We laughed until we cried! I hope you do not think I make fun of my mom by repeating the funny things she says. They are just some of the bright spots in our day and I just have to share them.

We are decreasing her steroids over the next 2 weeks. I am so anxious to get her off them. They make her hungry, as evidenced by the statement above, nervous, jittery, shaky and she has difficulty sleeping. I hope tapering her off them goes well. I know they have helped her a lot as well.

We also finish our radiation treatments tomorrow. YEAH!!!!! Then when the kids are out of school for the holidays we can actually let mom sleep in for a change. She is a real trooper. She never complains about anything. Although she will try and convince me she already took that shower! :-)

Josh wrote his girlfriend Monica. He is in a better group of guys now and seems some happier. Apparently the other group had group depression or something like that. He has lost some weight which worries me. He was already too thin going in. Apparently they have had to give him a "food waiver". This means he gets more food and more time to eat it in because he is so underweight. He said he constantly has hunger pains.:-( We still plan on going to see him in Jan.
He missed Monica terribly. Too sappy to repeat the mushy stuff!:-0

Our new Home Sweet Home

I guess we are officially moved. We completed our never ending yard sale and shipped the remaining stuff (which was a lot) off to a local charitable resale store. They even came and picked it up which was such a blessing. Then we loaded the rest of the straggling stuff and hauled it to either storage or to mom's. Now I have to go through the boxes we brought and probably send more stuff to storage because there simply is not enough room. But now we are all under one roof and I can unpack at my "leisure".

Josh called a couple of days ago. I don't think he is "enjoying" boot camp, but he is still alive and still there! His graduation is set I think for the 10th of Jan. We are planning on driving mom down for the graduation and ceremonies as long as she feels like it.

Mom has caught a cold and needs prayer for that. She has not felt very well for the past 3 days. She has been very tired yet restless. We decreased the steroid today, so hopefully the restlessness will subside and she can truly rest. They tell us that getting off the steroids is one of the hardest parts. They want to do it as soon as possible. We finish our radiation this week. Friday will be her last treatment. I have very mixed feelings about this. On the one hand we will not have to drag her back and forth to CARTI every day and we will stop frying her brain so the healing can begin. On the other, this is the max amount of radiation she can have in this area of her brain and then we will just wait for the MRI after the first of the year to see the results. They have to let the glowing effect (swelling) subside so not to confuse it with tumor growth. Apparently this is a common difficulty when reading the next MRI. We need prayer that there will be not regrowth and new areas. Another tumor would devastated us. I read where people have 3 and 4 surgeries for different tumor areas. I don't know if mom can tolerate this kind of aggressiveness in her brain. These tumor cells resemble stars and each little point has tentacles that shoot off and grows another star. Therefore they say they can kind of tunnel in the brain and pop up elsewhere.

Thank you for all your prayers and support. She still gets so many calls and cards. When she gets some of her memory back she will be amazed!

Truly a pleasure

We saw the oncologist today, and he said that it was truly a pleasure to see how well mom was doing. He seemed surprised this week that she was doing as well as she was. I think he expects the side effects to begin at any time. Problem is that we already are experiencing the memory loss, confusion, and fatigue. Our success so far is that we have remained fever free and have not developed thrush. The thrush apparently is a big threat.

The other pleasure is that mom and I got to go shopping again tonight. This time with out kids! I wheeled her all over the mall. We watched some young girls sing Christmas songs in the lobby. Then we went to Tuesday Morning and mom walked. We laughed at our Christmas shopping because we both only bought new slippers for ourselves! :) The funniest thing she said today was that we saw the Northern Lights in Little Rock! I still think she is living a much more interesting life than me right now!

A good day

There is not much new happening at the moment , but I wanted to let you know we had a good day today. Mom had another few minutes of true clarity this morning and seemed more "with it" the rest of the day. I got very few really wacky stories. She was able to keep up with happenings all day.

We went to the Christmas tree farm with Hogan's preschool class. It was bitter cold and Hogan was not having fun, so we left after about 15 minutes. He refused to drink hot chocolate, ride the hay ride or get his picture taken! Then we went to the mall and had lunch at the nice Chinese restaurant, shopped a few minutes, went to radiation, back to the mall (used a wheelchair this time) then to pick up Sarah and take her to dance. Then to our house to check on the new floors (they are beautiful) and home. She slept very little and enjoyed all the activities. So therefore, I deem this a good day.

Pictures available to view

We have a new website on mom. It is an online scrapebook that you may visit to keep up with mom in pictures. It is easier to post pictures in this album than on the blog. The address is www.fayesupdate.shutterfly.com The password is "God's child" and it is case sensitive. You may add comments or post pictures. Hope this helps everyone see mom and feel a bit more connected.

She is having a few visitors now. So if you would like to visit please call and let us know. Thanks.

A difficult post to write

After talking with an out of town friend and Steve this weekend I feel I need to be more clear about mom and her diagnosis. Apparently, I have not painted an easily interpreted picture. When I first started blogging, mom would occasionally ask to see the blog and read everything. Therefore, I was guarded in what I wrote about her prognosis and details of the tumor. We talked to her about everything the doctors said and reminded her several times, but I did not want her to read it on the site and think we were trying to hide information from her. She went through a period of distrust (as she still does occasionally). I think it stemmed from the forgetfulness. She was surprised each time we told her the prognosis. Often she would comment about how she seemed to be doing better than the rest of us. I think this was because she forgot, but it made her suspicious as well.

Mom's tumor is a glioblastoma multiform grade 4. This is a very aggressive type of cancer and is about worst type a person can get. The only breakthrough in treatment in the last 30 years is the Temodar (chemo pill). Even when a tumor is completly removed it only improves the chance of long term survival. Long term survival of a glioblastoma multiform (GBM) is considered to be two years. Most people with GBMs only live 10-12 months after diagnosis even with resection (surgery), radiation, and chemo.

I read a cancer message board on a fairly regular basis. They have a whole section on brain tumors and most of the people posting are family members of a GBM patient. One lady wrote that right before her loved one (I believe her mother) was diagnosed, they were praying it was not going to be breast cancer or something more commonly known. She said we just didn't understand at how much worse this type of cancer was.

Now, given that most people think what ever is happening to them is the worst possible thing, I hesitate to even mention this. But I must say, I agree with her. I have watched other people come in and out of CARTI for treatments and the doctor's office for check-ups. If you were to run into most of these people on the street, you might not even know anything was wrong with them. They walk in by themselves, check themselves in walk back to the treatment room and afterward, many will return to work. This is not to say they don't have problems or things are not serious and scary for them, but they can function mentally. They have their cognitive skill intact. Mom would not be able to get from point A to point B. She gets in the shower and does not even remember how to shower some days. I stand on the other side of the curtain and pass her everything she needs. Other days she does much better and can reason out what to do next or what she has already done. This tumor and it's treatment took mom almost immediately. She has not been alone in over a month.

I guess I have hesitated to write this because I think it is important to stay positive. I think I also struggle with the fine line between faith and reality. I have no doubt that God is able, what I do struggle with is will God be willing. My prayer has been for God to heal mom completely and allow her to live for at least 30 more years as a healthy, happy, active person. Many times in the bible Jesus asked what the person in need wanted before He healed them. I fully believe He knew what their needs and desires were, but wanted them to ask. By asking we acknowledge God is in control and we are human and incapable of changing the situation. We also become specific when we have to make a request. And then we simply communicate with God when we talk with Him. So, as a nurse, I understand, maybe all too well, what a diagnosis of GBM means and what that path looks like, but as a Christian, I know God can do what He desires.

I am also a fairly private person who tries to keep my problems, my problems. I don't like to burden other people with my needs or moods. But I will try to let you all know what is going on and how I am feeling on a more personal level. I think this will help you better know how things are with mom. This is about her, not me. I feel privileged to be able to care for her. She has been such a Godly mother all my life. I remember well, the hours she spent on her knees for her family and friends, talking with her beloved God. Leaning on His strength through so many difficult times. She was strong and faithful, now I just hope I learned from my teacher. This is the biggest test yet and I so do not want to fail. I feel time is short and so precious.

The last few days I have been angry. Angry at the world and nothing in particular. My poor sister and husband got the worst end of it. They both handled me beautifully and with such grace. I thank them both for their faithfulness and love. Today, I am sad and scared. My kids are both very cranky and upset. They ask to go home a lot and get frustrated with Mor-Mor (what they call mom). She doesn't know things they know. They don't understand why she can't remember Prissy (mom's little dog) had to be euthanized several months ago and why she keeps looking for her. They don't understand why she changes the channel while they are watching a show. It is a difficult thing to balance. They are so young and so much is being asked of them. On a whole, I think they are coping like little champs.

So, I hope that this did not surprise anyone. I just want to make sure that you all understand the situation as fully as possible. Now that we are several weeks out from surgery, I think many people are expecting mom to get back to normal. This may not happen for some time and it may not ever happen. We will plan for the worst and expect the best. I simply do not know what else to do. It is in God's hands, and I thank each of you for your prayers. We can tell she is being lifted to God daily.

A true moment of clarity

Yesterday I had a prayer answered. Mom and I were returning to her house after working around ours for some time. She started out talking about her confusion. She told me about waking up in the night and not knowing who she was or where she was or what she should be doing. She said it was "awful". So we talked about just calling me if that happened. She went on to talk about how she appreciated what every one was doing for her and that she was not taking anything for granted. We discussed her business and it's future. We talked about all her kids and what they were doing. We decided to come up with notecards she could look at to tell her information she might forget. We talked for several minutes and it was my mom! I miss her terribly and was delighted with even the most brief conversation! She quickly returned to her usual state of confusion. But I was beaming!

Dr. Baltz said we are still in the honeymoon phase of everything. He once again tried to prepare us for what might lie ahead. He said some of the worst times are after we finish radiation. He warned us of the 3rd week post radiation period. We are not to let her drink any water due to the low sodium levels that come with the chemo. He also said we are very typically confused and forgetful. It could be 6 months before we know where she will land. He did say we can travel if she is up to it. So right now we plan on going to see Josh graduate!!

Hope you like the new picture. It was take right after mom's first biopsy in mid October. She was still in ICU. We were not allowed a camera so I don't know how we all lined up and appeared for everyone to see! We also had a small party one night with cupcakes and all. It is amazing how well their little curtains work!

Today mom was "out and about". She was her usual social butterfly! She had two Christmas parties to attend to today. She got to fix her hair and wear makeup! She looked really nice. I apologize for not taking a picture. I am carrying my camera everywhere so maybe I'll get better at this soon.

We ended out garage sale today. We sold a lot of stuff, but still have a lot left. I think we will call a local charity and let them come help us transport it to their resale shop. I will be glad to just be done with it. We have a little more packing and moving to do and a lot of vacuuming! Then we will turn our attention to our new little space. We are currently living out of boxes.

Jana had planned on coming in this weekend, but got snowed in. They had about 8 inches of snow overnight. She will try and come in Sunday. I will be glad to see her. She and Anna have been incredible. They are right here with me, helping as much as they can.