Our trip to see Josh

We left on Wed. To see Josh in San Antonio. We spent the night in Dallas with mom's brother and got a chance to visit during a late dinner. (Jana and I left late! No guys to sigh, roll eyes, or slump shoulders at us! Just two girls, working, packing, re-packing, cleaning out the van, loading and re-loading the van, and 3 kids to wrestle! Can't imagine why we were late!) Then we got up on Thursday and headed to San Antonio. We traveled slowly, stopping every 1-2 hours! When we got to San Marcos we had a real problem. There is this great looking outlet mall (actually more than one!) We had to keep going or miss Josh's ceremony. We really debated, talked about no one knowing really where we were and coming up with some flat tire story! We drove around the parking lot real slow looking at all the stores, but finally we decided that maybe, just maybe we should go see Josh!

We arrived just in time for the ceremony (actually a few minutes late because of a very important side trip through a parking lot). I had to walk several blocks because all the parking was taken up. There was standing room only and about 800 grads on the floor. They just release everyone to go find their loved one! We decided to stand close to where everyone was leaving and it worked! We finally got to see Josh! Everyone had warned us that they look totally different and boy were they right! Josh has gained about 30 (very needed) pounds and looks great. He has muscles and a tan! (sorry girls he is taken!) His hand looked huge to me! (They were always so boney before!) We were then able to go eat with him. We tried to find the buffet, but kept getting wrong directions, so we ate at the drive thru at BK. He seemed happy enough. But he had to leave very soon to be back in his dorm on time!

So we headed to our hotel and got something to eat for ourselves. The next morning we got up early and met up with Anna and her family. We had 7 kids, mom, 3 sisters and only one husband at this point and we were ON TIME!!!!!!! We only had standing room again though and it was pretty uncomfortable. But we enjoyed the graduation. During the parade we saw "Josh" 3 times or more! (They all look a lot alike in the uniform and all!) But one of those guys was really him, we have pics to prove it! Then we got him for the rest of the day. We had a frustrating time leaving base due to some errands Josh had left to do and about 800 other airmen doing the same errands! But we left and went to relax.

That night Josh, Monica, Jana and Brad (Emily too!) went to watch the Spurs play basketball (Josh got more time off base that way). Anna's family and ours with mom went to the Alamo and to the Riverwalk. We had a lot of fun riding the boats and eating!

Next morning we got Josh and all met at the mall for pictures. We had a mom+sib group, mom+ grandkids, and mom+entire family pictures! They turned out great and we can't wait to get them in the mail. That unfortunately took almost the whole day. We took the kids swimming and later Josh back to base.

Sunday AM we thought we were going to drop Monica off with Josh to have a date day and we were heading home. Well, Josh was so sad about us leaving we decided to stay and travel late. He and Monica were actually both glad we decided to stay. We spent the afternoon at the zoo and then rushed Josh back to base. It was really hard telling him goodbye at the end. Even I got teary eyed! We watched him walk all they way back to his dorm until we couldn't see him anymore! Then we took Monica to the airport and left town. It made me very sad all the way around. We had told Josh of mom's prognosis on Friday afternoon and I think every one had that heavy on their minds.

Josh is now in tech school and has more freedom to contact us! So I hope he will blog occasionally if he can and give us all updates!

Mom made the trip great. She really enjoyed having her whole family together. She smiled and laughed a lot. She slept very little and did a lot of walking. She gave us a few good scares on the way home though. We stopped in downtown Dallas and lunch with her brother and she tripped going up a step and fell, banging up her knee. Thank goodness there was no serious damage! She then almost fell again! I think the pavement was uneven and she was shuffling her feet a lot! Prior to this, we had stopped for gas and I had to potty AGAIN! (we'll talk more about that in a minute!) I slipped out of the car and went in while Steve got gas. When I got back in the car Hogan was frantically saying Mor-Mor got out! Over and over! Sure enough she was missing! I jumped out of the car and asked Steve. He had turned around to pay at the pump and I guess this is when she got out. He began to frantically search outside while I ran inside. We found her at the coffee counter, mixing and stirring coffee in cups! We tossed those cups and poured her some fresh and left. (She wasn't even carrying money!) The first scare had come that last night on the road. It was about midnight and fortunately I had locked every single lock on the door. I was awakened by locks and nobs turning and the door banging around! I sat up and mom was trying to go out in the hall! I thing she was just looking for the restroom, but it scared me! I don't know what would have happened if she had figured out the locks quietly!

Despite all that we got her home safely and she is comfortable in her own nest now! She has developed another cough and we will see the doc tomorrow. I have a couple of chemo drugs I want to ask him about. I hope it is something we can try! I am not ready to throw in the towel yet! So please pray this will be a good thing for her!

So, now for us! We are growing in numbers! Yes, I am pregnant during all this! We are in total shock, but very happy! It has taken me longer to get happy than Steve! He was very excited from the beginning! I am almost 3 months along now. The baby is due Aug 22. Sarah is very happy and Hogan just sticks his lip out at me and will hang his head when we ask him to tell someone the news! (He is a really mamma's boy!) He is warming up to the idea though. He will now talk to us about the baby some. It has taken me a long time to announce the news for several reasons. First, I had a hard time coming to grips with the whole idea, second I wanted the kids to know first and third, I wanted all my family to know before we told the world. It was the first thing Sarah said to Josh when we saw him! Now, if I could just get some sleep!

Some good days

I am very tired so this will be short tonight. Mom's steroids are working well and we have had two good days. She is walking well again and much more talkative now. She seems more interested in what is going on around her and not sleeping as much. She has laughed and joked the past two days. We are thankful for every good moment God provides.

Tough News

Last night and today have been very difficult. We received the MRI report last night but I wanted to make double sure we understood everything before I told the world. The edema from radiation is considered "rebound edema" that is where the steroids are stopped too early and the edema "flares" and can become very bad. Mom's is very extensive involving over more than a 1/4 of her brain. The oncologist increased her steroids today back up to her max dosage of 12mg/day. He said that we really needed to get this under control because that was what was causing all her symptoms.

The MRI entailed even more bad news in the fact that even though we have cut out the tumor, given it a "life time dose" of radiation, by giving her the best chemo drug available, it has tripled in size. Usually they like to see that the tumor has shrunk or at least become stagnate in size. The doctor said that it was very concerning that it is such an aggressive tumor. He repeated his saying that "to do well in the end, you have to do well in the beginning" and this is not good.

He asked that I call him tonight so we could discuss all this further. When I talked with him this evening he talked a lot about how he will guide his care from here on out. He said that everything would be based on how well she is interacting with us and her quality of life. He said that when the "light was on and no one was home" anymore it would be time to look at hospice and comfort care. He suggested that we begin to interview companies and nurses for this purpose, and decide whether we wanted home hospice or a hospice facility. He said that we have a short period of time left and all this could begin around the first week in February. He promised that he would tell us when it was time if we were not able to see it ourselves. We still want a miracle and are continuing to pray for this, but we definitely do not want mom to suffer or go through anything unnecessary, especially if it is because we can not deal with reality.

I think we all feel that at this point we were more aggressive than what most people might have recommended and it did very little good. She has had cognitive deficits from the very beginning after her surgery and has never fully recovered to a point where any of us would want to "live like that". I think at this point, surgery would be futile since it is such an aggressive tumor. He did mention two other drugs we might try after we get the edema under better control. The drugs can cause a lot of nausea and vomiting and severe fatigue. We will be researching these drugs so we can make a decision soon.

We are all very distraught at this time and need your prayers not only for mom, but for us as well. Mom has been one of the finest ladies I have ever known. She has always been there for us and loved us through everything. Now, we want to return this great love to her in the best way possible. As time marches on in the next several weeks, she and I will be home more and more. If you would like to come and visit, please just let me know so I can make sure we are available to you. I make no promises to have a clean house or tea and crumpets to offer, but you are welcome.

Stat MRI!

Today we got our follow up MRI a little sooner than originally planned. It all began yesterday. Mom had a friend come and sit with her in the morning while I worked. Then I came home for lunch to get mom. We went out to eat and then to the gym to walk. She did great. We walked almost 1/2 mile in about 20 minutes with only 2 rest breaks. Then we went back to my office where mom dozed in her recliner and watched TV while I worked. She was very unsteady on her feet but made it to the car and in the office fine. Then after work I got her up to leave, fortunately Steve was there because she slide down the wall. She got her feet crumpled under her and this hurt, but did not injury her ankles. Steve got her up and I took her in the restroom. We thought she was fine so Steve left to pick up Hogan on time from daycare. Mom then almost fell again in the bathroom. Not to be crude or anything, I closed the lid to the toilet and quickly sat her down. She then just slumped against the wall like she could no longer even sit up. She regained strength shortly and we walked to the back of the office to leave. Once again she crumpled. I slid her down the wall again. And again she got her foot caught under her although did not injury anything. I had to call Steve back to the office to come help me. Next we went to my Jiu-Jitsu class. Steve took mom and the kids out to eat. On the way in to where I was, she fell against Steve in the parking lot. At home she almost fell a couple of other times!

So this morning we got up, ready, and off to school and work. She fell against me and we leaned heavily on the railing. Once inside she sat and looked at mags waiting for a friend to come and take her to lunch and to walk. I got her up to the bathroom and she almost fell again. I then had the doc look at her. I told her I though she was having seizures. She examined her and agreed. She called the oncologist and they talked. He told mom's doc that he thought it might be scar tissue. They decided to get the MRI today and see him tomorrow. They gave her a 10 mg dose of steroids - shot form. She went to lunch with her friend (Sonic drive in) and then she and I went for her MRI. Anna met us there and helped hold mom still during the scan. Mom fidgets a lot and Anna had to keep her hands on her legs and hands to keep them still. When you move during the scan it makes everything very blurry. Now they wanted her previous films from UAMS, so Steve and I scrambled and he got them to the MRI people before 5:00. They were supposed to send a "wet reading" to the office tonight. We have been on pins a needles since waiting on this report. At this point they have all gone home for the night, but I have a key!!!!!!!!! So I will be going to look her in about another hour. Please be praying that it is just swelling. (There was a lot of edema on the film. A little over 1/4 of the film was bright white indicating edema from radiation. I don't know how they will read through that.) The oncologist also mentioned maybe needing a PET scan. We have an appointment in the AM with him so we will know before too much longer. Oh yeah, and he increased her daily steroids to 8 mg/day. Double the dose and 2/3 of her highest dose!

I'll update you again when I know something.

Still in the Top 25%

Well, we say our oncologist yesterday. He looked very concerned as he asked mom many questions and listened to our horror of a week. I told him that on the increased steroids mom was doing better. Her appetite is still not very good, she still has trouble swallowing pills, and she has to ride in a wheelchair often now. He asked her simple math questions and she did well until he asked what 100 divided by 10 was. She looked very perplexed and repeated the question then just looked down in her lap and started reading to him from her Reader's Digest. She knew the Gov (well sort of, the old Gov. We just had elections), but she could not remember the President. She told him that she did not know these things very well prior to all this. But I told him not true! I said "Mom, George Bush sends you stuff weekly asking for more of your money!" She again began to read from the Reader's Digest (aloud mind you). She then pointed to the Expense of Sin and said "I need to sent this to George!" Well the doctor was now doubled over laughing! I can't tell if she means to joke sometimes or if it is just funny timing. I believe this one was a fluke though!

After he looked her over and we talked, he said that we were doing a great job taking care of mom and that he was very glad we had called him and then come in. He said we would need to stay on the 4mg of steroids and maybe even increase back up to 8mg (highest dose was 12mg previously). I hope we can stay at 4mg. He also said the thrush looked better. He then told me that he understood how painful and difficult it must be to watch her have such a hard time, but that she is still in the top 25% of people who have all this done. He said really she is doing very well in his estimation. He said we were so close to getting the MRI he didn't see any need to move it up unless we just wanted to. I told him no, if he was comfortable that this was post-rad syndrome then I was too and I do not want to be scared to death with an MRI that shows glowing effect and can't be determined if it is that or tumor. He agreed, esp. Since we had been off steroids.

He then told us that we had to walk, walk, walk!!!!! I thought "you try it!" So after we left the doctor's office I took her to the mall since it was cold and windy outside. We walked about 1/2 a mile with multiple short breaks in between. I thought we would not make it to the car, but we did and without a fall! :-) Today, we walked another 1/2 mile. This time with fewer breaks. But tonight going into a restaurant we had to stop and go back for the wheelchair. :-( Once her leg spasms that is about it. I don't know what triggers it either. I wonder if it is fatigue related. Lately it has been mostly in the evenings after a big day. Today was not a big day, but yesterday was, so who knows.

Post-Radiation Syndrome "Crash and Burn"

Sorry it has been so long since I blogged. We have had a very difficult time since right after Christmas. I have not felt like blogging I guess. It seems to be mostly bad news right now and I am so tired I just fall into bed each night. I am having a very hard time keeping up with my bible reading without turning on a computer.

Mom was taken off steroids completely about 2 weeks ago. It took a few days to really start seeing the effects, but when they came they were very evident. Mom began to have great difficulty remembering even to eat. She would sit with a sandwich on her lap for two hours. I would continually say "Mom take a bite." Even then she would eat very little. She had trouble walking. On Monday, it took Jana and I both to walk her. We each stood by her side and held her up. She would look down, lean over and walk faster and faster until she began to lose her balance. Sarah and Hogan pushed the wheelchair with us so we would have a place to sit her down when necessary, which was often. She fell twice that night and would have a third time if Sarah had not gotten us a chair quickly. She was very shaky and then began to have a terrible headache. The doctor increased her steroids and told us if she was not better then he would have to see her today. Well, thank God the steroids are working.

Today, she is able to walk around the house again with a little assistance and her appetite is better and she knows to eat. She still has some trouble with swallowing pills and completing even the simplest of task though. She is also talking a little more. I think we will try to get in tomorrow or Friday to see the doctor. On the phone he told me that this was the typical "crash and burn" after the radiation treatments. He called it the post-radiation syndrome. He said he was surprised that she had not done this before. It made us feel better that we were still within the "norm" for what she has been through. We were so scared it was going to be new tumor growth. Jana and I were both very stressed on Tuesday waiting to talk to the doctor. I was sick at my stomach and shaky all day as well as weepy. This is hard to cover when you are working. I am in such close proximity to my patients.

Also, Josh called on Saturday and told us he had passed all his test this past week and was going to graduate on the 12th as planned. We were so excited. We began looking at hotels and activities of the graduation and town to make an itinerary. Fortunately, I drug my feet on purchasing the hotels rooms. On Monday evening he called and said he had failed another dorm inspection and would be recycled again, this time for two weeks! I don't know what is going on but I sure hope he makes it. It would really be sad for him to come this far and not finish! We are so proud that he was able to pass the written tests and the physical tests. I can't wait to see him. So we are rescheduling our trip for two more weeks. Mom will hopefully be better by then!

Thanks for all the calls and visits. We really appreciate your prayers. Diane (Rollins) Hughes wrote that she wanted you all to know the little girl was theirs. Kalynn (unsure of exact spelling) Hughes. They are home and doing very well. They will have some future tests to "make sure". But for now, every thing looks very good. They are very grateful for all your prayers as well.

Steve's mom is doing much better. She is still very nervous after the break-ins but they took some time off and she is doing some better. His stepmom is recovering as well. She is home and has home health come in and change her dressings daily. Ed is going back to work, so I assume she is getting around okay. We did miss seeing them for Christmas, but will hopefully see them in the spring.

SATURDAY

Well, Angie got rid of my beautiful purple flower design, so now I must at least type in purple. :) Anyway, I took Mom Saturday so that Angie and her family could have some time to themselves. Brian, Brianna, Mom, and I went to pack up more of the stuff at the house in Alexander. I keep saying, "Just 2 more hours and I'll be done!" Yeah, right. Mom got to visit her cousin Joe while we were there. We then went to Walmart, JCPenny's, and Hallmark. I had a few exchanges to make for Christmas. She did OK. She was very tired. I had not seen her since the Sunday before. Within 6 days though, she really seemed to have declined. She was very shaky, weak, and tired. She did not eat much. While we were at Hallmark she fell. She was very confused and really didn't want to talk much. She did entertain Brianna while we packed up though! We had started her back on the steroids Thursday, so hopefully she will improve again. I'm anxious to find out what the Dr. says this Friday.
Josh's Graduation Ceremony got pushed back two more weeks. We found that out tonight. I think he is feeling pretty blue about that. He did, however, pass his evaluation and physical. We are very proud of him for that. I think he is missing the family, and of course, Monica! :)
~Anna~