How quickly things change...

Well, this is the post that I has hoping to never write 14 months ago when Dad was diagnosed with his brain tumor and I started this blog. It seems like yesterday on one hand, and many moons ago on the other. In the last 3 days, Marc has really taken a turn for the worse. As you have read, Mom brought him home and he was getting stronger, but then over night, an about face. On Saturday, it seemed that Dad had lost all strength and started on a quick slid. Steve, the kids, and I were in California with my side of family, when Marcia called to let us know we needed to get back. Today, I am looking at him in his bed sleeping at home, while with the help of hospice, we are doing everything we can to keep him comfortable. These are his final days; he has stopped eating or drinking, doesn't respond often, and his body hurts every where you touch. We have been able to control the pain as long as we are diligent on getting him his medicines even while he is sleeping.

This has been a journey with many ups and downs. We all know Marc to be a fighter and he remained true to that through this whole journey. With Mom standing next to him (and many times holding him up), he has fought every battle brought at him (and there has been plenty). Yet at some point, enough is enough, and your body is done and I think Dad recognizes this and is ready. He seems to be at peace. For the rest of us, it doesn't come as easy to be at peace. We know that he is in pain and don't want that for him, but it is hard to say good bye to, as Annie said today, "the best PawPaw in the whole world".

Dad has been the best PawPaw; supporting Brayden and all of the boys on his team in baseball, rides on the "tractor" for Annie, and kisses on Abbie's nose make my three kids think he hung the moon - he is their hero. It has hit them hard since we have been home. I talked with Brayden and he just cried and cried and when he hugged PawPaw good-bye, PawPaw used the strength that he had to grab his head and pull him closer. When I talked with Annie, she just sobbed and said it isn't fair and she is going to really, really miss him when he is in Heaven. She then asked me "where will all my sadness go Mommy?" and just broke my heart. I don't tell these stories to bring tears (although I have had plenty) but to show just what an impact this man has had in our lives. PLEASE share stories of the impact he has had on you as well as we want to remember him for all of the great times and laughs we have shared over many years!

As we spend all the time we can with Dad over the next few days, we will try to keep you posted. We want to be with him and keep him as comfortable as possible until the very end. I know he knows how loved he is by us, and all of you. Please keep us all in your prayers as you have done for a year as we need to remain strong and have peace with his passing.

From our family, may 2010 bring happiness and health to you and yours.

Julie

It's a wonderful life!!

Marc got home from rehab about noon on Christmas Eve. It is so good to have him home again. He hadn't been out of bed for 3 days before coming home so I was a bit apprehensive. The ambulance crew put him in the hospital bed in our living room and he slept for a couple of hours. The hospice nurse came by to do the admission assessment and he smiled, made faces at her and conversed as much as he could. When she left he wanted to get up into his recliner. I was a little nervous about transferring him from the bed to the wheelchair and was very surprised that the transfer went smoothly. Marc was able to stand, move his feet just enough to pivot so his back was to the wheelchair and sit down. (We have perfected the transfer process over the last few months - he puts his arms around my neck and I hold him around his chest, just like a big hug.) Then over to his lift recliner we went and again transferred smoothly. There he reclined and slept for the rest of the evening and into the night. We were both so tired that we slept until about 3:30 this morning. I don't know what woke us up but I looked at him and told him Merry Christmas. What a joy it was to hear him tell me Merry Christmas. We both went back to sleep and slept soundly until about 8:30 this morning.

Today was a quiet and relaxing day. I piddled around the house, putting things away from his stay in the rehab center and catching up on laundry. About noon I asked him what he wanted for Christmas dinner. I gave him a choice of roast beef or ham. I had pictures of several foods so that he could point to his choice . . . he chose lasagna. Leave it to Marc! Of course I had no lasagna, so I took him into the kitchen, got out the ham and the roast, told him to pick what he wanted and he chose the roast.

Marc really perked up this afternoon when a friend stopped by to visit. Then my parents came over for the afternoon. We spent the afternoon watching Home Alone and then had dinner. Marc had not eaten anything in the last 5 days so I was very pleased to see him eat roast, potatoes and corn followed by cherry cheese cake for desert. It was wonderful to see him enjoying his meal. It's the first home cooked meal he's had since Thanksgiving.

After dinner he wanted to go back to his recliner, where he has been softly snoring ever since. I so enjoy his snores! He is having no pain and is resting peacefully.

It has been a wonderful Christmas. It truly is a wonderful life and we are blessed to have this time together!

It's Saturday and we're still not home . . .

Yep, we are still in the rehabilitation center. Needless to say, we are very disappointed. Marc had another downturn - he became much weaker, wouldn't eat and would hardly drink anything. They thought that he was dehydrated so they gave him a bolus of IV fluid followed by another liter of fluid. That seemed to perk him up a little but later in the day he seemed to worsen. The only think that made him open his eyes was seeing the grandchildren.

He had a rough night last night, he was restless and couldn't seem to get comfortable no matter how I positioned him. He wouldn't talk to me through the night, he just moaned and groaned and I really thought he had just given up. I was ready to tell the Dr. to get in touch with hospice and make preparations to take him home.

This morning, however, when the nurse came in and said "How's my buddy this morning?" Marc smiled and waved. You could almost have picked me up off the floor! By 10 am I had him up in the wheelchair (it took 2 of us to get him up) and bathed him. I asked him if he was giving up or was going to work to get out of here and he gave me a thumbs up to "getting out of here". Then the physical therapist came in and started joking with him saying "there's my Budgie" and he started making faces at her. He spent an hour in PT and when he came back to the room the Dr. was there. He said that all of his labs returned normal, not what he expected at all but the chest X-ray he ordered 3 days ago had not been done so he ordered it again. He said he couldn't find anything physical to cause the symptoms. I asked if it couldn't be depression and he told me that he often sees patients respond like this when they reach a plateau with therapy and think they will never improve. He said he suspected that depression could be the cause. Marc is already on an antidepressant so the Dr. decided to increase the dose some and add an appetite stimulant to his medications as he hasn't eaten anything in the last 3 days. He has lost another 10 pounds this week. After the Dr. left Marc ate the bread pudding and pushed the rest of the tray away, refusing to eat anymore of his dinner.

Steve came in and Marc smiled and made faces at him but then started falling asleep in his wheelchair. Steve and I put him back to bed to let him rest. I was amazed at the change in strength, Marc was able to stand holding on to me and take 4 steps to the bed. What a wonderful improvement. I came home to get some laundry done and wrap some Christmas gifts and will go back before they bring his dinner tonight. I am hoping that he will decide to eat something tonight.

Please say a prayer for Marc. I will let you all know how things go. As of yesterday afternoon the insurance had approved Marc's stay until the 28th. Hopefully he will get home before the kids get back from California on the 29th and we will be able to have our late Christmas at home with them.

It's a long story and I'm delinquent in telling it!

We had seen the oncologist at MD Anderson on November 17, Marc was doing well and was started back on the oral chemotherapy. The oncologist said he thought that they had rushed it changing him to the IV chemo and felt that with no new tumor showing on the MRI that it would be best to change Marc back to the oral chemotherapy and on a regimen of 5 days on chemo every 28 days. He started the oral chemo again on November 19th.

The chemo seemed to hit him really hard and he started getting weaker day by day. He was still going to outpatient physical, occupational and speech therapy each 3 times a week but even with the therapy he just became pretty much debilitated. By November 30th it was all he could do to get from his recliner to his wheelchair. That night he started sounding congested in his chest and by 5 in the morning his breathing sounded "wet". I checked his oxygen saturation and it was 76%, a normal is 95 to 100%. His blood pressure was elevated and he just didn't look good. I tried to get him up into his wheelchair and was unable to so I called the ambulance. Needless to say, he was admitted to the hospital.

He was hospitalized on Tuesday and diagnosed with diastolic congestive heart failure. With treatment his condition improved but he had become so weak that he could barely stand with the assistance of 3 physical therapists. He was discharged on Friday back into rehabilitation.

The first couple of days in rehab his congestion increased again. A chest X-ray revealed bilateral lower lobe pneumonia and he was started back on antibiotics. Fortunately he has quickly improved but remains dependent on oxygen. If he is off the oxygen for any time at all his oxygen saturation goes down to the 80s.

The last 2 days he has shown significant improvement and today was able to walk from his room to physical therapy, about 150 ft, and only had to stop to rest a couple of times. He stays up all day now and his spirits have improved. I have included a couple of pictures; the first was taken yesterday and the second today. I couldn't get him to smile much for the pictures but if you look close you can see the start of a smile on the right. He is now cutting up with the staff and acting more like his old self. He actually does smile a lot now and it is so good to see.

We are hoping that he will get to come home Friday and if he keeps improving at his present pace, that should not be a problem.

We want to thank all of you for your prayers, support, kind words and actions. We couldn't have made it this far without you! Please continue to keep Marc in your prayers.

Merry Christmas to all from: Marc, Marcia, Steve, Julie, Brayden, Annie and Abbie.

Great News Today!!!

Marc and I went back to MD Anderson today for the latest MRI results and got some great news -- the only thing visible on the MRI is the empty tumor cavity. There is no evidence of any new tumor growth!! What great news and we are thrilled.

Marc pain has improved significantly since he had the vertebroplasty. The difference is amazing. He now only needs pain medications a couple of times a day. The neuro-oncologist is arranging for a bone density study and is referring Marc to an endocrinologist to see if the newer medications for osteoporosis will help Marc's condition. We are hoping the medication will help Marc to avoid any further fractures in the spine or elsewhere. We will just have to wait and see what the studies show and what the specialist thinks about possible treatment.

Marc has shown some improvement since he has been home. He is now walking some with the walker. His caregiver takes him to physical and occupational therapy 3 times a week and he is going to speech therapy 3 times a week. His days are quite busy now, which is good. His speech seems to have improved a little, still not good but the improvement gives us hope. His speech therapist has arranged for us to try out a speech assistive device called Lingraphica. It has shown good results in trials on patients with aphasia. I have a friend whose mother is using one now and she is very pleased with the results just after a few days. With any luck at all it will help Marc with his communication skills. That would be a blessing all around! Marc gets so frustrated, he knows what he wants to say but the words just won't come out. It frustrates me too as I sometimes have no idea what he is trying to tell me.

Please continue to keep Marc in your prayers.

Home from rehab. and not a minute too soon!

Marc had a wonderful surprise from his buddies from the Ratshack, a social networking internet site that Marc has been involved in for a long time. For several years they have had a get together at a campground near here. Marc and one of the other fellows were the organizers of the "Rat Fest", as it is now known. About 15 of them arrived at the rehabilitation center and surprised Marc on Halloween. It was really nice to see old friends and the joy on Marc's face was priceless. It was pure pleasure to see Marc laugh and clown around with them. I have inserted a few pictures of their visit.

I brought Marc home from rehab today and he couldn't be happier. I think some days he thought he was never going to get home again.

The therapy has been good for him and he is much stronger now. He can make it to the bathroom and back using the walker now. It is still a struggle for him but he is a fighter and is determined to get better. He still struggles with his speech, the aphasia hasn't improved much but every now and then he gets something out that he wants to say. That is an improvement. I have arranged for him to go back to the speech therapist that he had before and I am hoping that will help. I have also found a computer assisted language system that I hope will be approved by the insurance company. It should help a lot, if it works like they say. It will speak phrases for Marc and will also help him to relearn some of the things he has lost in his language skills.

It's now been a little over a year now since Marc was diagnosed. He has a followup appointment on Tuesday with the oncologist. There is no MRI scheduled at this time so I'm not sure if they will restart the chemo without repeating the MRI. I will let you all know when I know more. For now we are just going to enjoy Marc being home again.

It's been a long time since the last update . . .

I have been putting off updating the blog because I really don't have any good news. After Marc's discharge from MD Anderson he got progressively weaker. It took two weeks to get home health to the house to get physical therapy started back up and by that time he could hardly stand, and then only with a lot of help. Another week of PT showed no improvement so I started calling trying to get him back into rehabilitation so that he could get some intensive therapy. That took another week.

The first day in rehabilitation Marc would do nothing but lay in bed with his eyes closed. He wouldn't even talk to me. He was angry that he was there. I talked to him that night and explained that I didn't want him there any more than he wanted to be there but it was to the point that I could no longer care for him at home. I told him that he needed to work hard to regain his strength to get back home. The next morning it was like he was a completely different person, his attitude had changed and he was responding to me and to the staff. He even smiled and shook hands with the physical and occupational therapists before I left for work. He progressed quickly from being basically bed bound, to being in the wheelchair most of the day and walking with the walker. By the end of the first week he was getting up alone, he was a little unsteady, but got up under his own power. He was also staying up all day and most of the night and driving the staff nuts. They had wheelchair alarms and bed alarms set but that didn't make any difference, when Marc wanted up he was getting up!

Last Friday he started complaining of abdominal pain again. The same pain as before. The pain seemed to radiate around his waistline. The pain was controlled the first couple of days with Tylenol but gradually became more severe. The internist evaluated Marc and felt that the pain might be neurological, and compared it to the pain that someone with shingles feels but much worse because it encircled the abdomen and wasn't on just one side as it is with shingles. Because Marc had been on long term, high dose steroid therapy he felt that there might be compression of spinal nerves. As I thought about it, that made since as Marc is now eye to eye with me when we stand face to face and he had always been nearly a head taller than me. An X-ray of the lumbar spine was ordered which did show an old compression fracture of the L2 disk. I asked what they meant by old and was told that some calcification of the fracture was present so it could be a few weeks to a few months old. Which means the IVC filter was probably not the cause of the pain in the first place. Why the pain stopped for a time after the filter was manipulated is unknown. In order to confirm the diagnosis, Marc has an MRI of the lumbar spine scheduled on Friday afternoon.

A pain management specialist was consulted but so far has just changed the pain medication. The stronger medication helped a little at first but Marc is now on the maximum dose with little relief. Any movement, even taking a deep breath causes him to cry out in pain. I am able to get him up in the wheelchair in the morning when I go in and he will eat breakfast. I usually park him in the lobby by the nurse when I leave for work and they will put him after bed after physical therapy. He will usually remain in bed most of the day and I will then get him up again when I get there after work. He was up in the chair most of the afternoon today. I was told he took a long nap after this morning's physical therapy. Steve came in to see him this afternoon while he was eating a late lunch. Steve asked if he wanted some ice cream and Marc's response was a thumbs up. So Steve went out and bought him a pint of Blue Bell ice cream. As you can see by the picture, Marc really enjoyed the treat! When I got there after work Marc had just finished eating part of his dinner and had pushed away the rest. He pointed to the bed. I could tell he was tired and wanted to get back into bed. He still has enough strength that I can transfer him without help but he can only stand a few seconds with assistance because of the pain.

He seemed to sleep for a couple of hours but would moan out in pain with any movement. When I kissed him goodbye tonight it took everything he could do just to kiss me. Just that little movement was excruciating. It just breaks my heart to see him in so much pain. It is so hard to leave him there but I have no choice. I have to work and have no other options.

I do have a caregiver who stays with him when he is home and she will come back when Marc gets back home. He likes her a lot and she seems very good to him.

I will try not to be so delinquent in posting to the blog, I know everyone appreciates the updates. Please continue to keep Marc in your prayers.