Mark seemed a little better last evening.  I was able to sneak the last Sutent of this cycle into him this morning and he has been sleeping ever since.  We will need more IV fluids today as he is on his last bag now.  I don't anticipate him being admitted to the hospital today.  He doesn't want to go and we are still waiting to hear from Schering for assistance with getting the Temodar for him.  I have left a message with Dr. Tan's office and will be hearing from them this afternoon.
     I almost have the website to where we want it...so that it at least has what the other site had that was so well done.  It has been a struggle but it is finally coming together.  Do not expect to see Mark writing anything on the blogs, message boards.  He reads them and then tells me what to put in.  He is fairly private with his thoughts except for this one.......he does not want his family and friends worrying about him, does not want anyone crying around him and absolutely no negativity in any way.  He doesn't answer his phone too much....but that doesn't mean he doesn't want to speak to anyone (I know..its sounds weird)....he received a couple of calls yesterday and promptly handed me the phone "Talk to them for me, Mom", so I do...but only the calls he tells me to answer.
     Our life here revolves and is all about Mark.  Everyday Don and I plan our day, what we do, based upon how Mark is feeling.  We do not mean to step on anyone's toes nor be unfeeling towards what anyone else may think about us.....we simply focus totally on Mark. 
     One of my good friends at Barnes, Cathy Hagan, emailed me yesterday.  She is one of many who have donated hours so that I may have some sort of paycheck.  I have not had a paycheck in over a month and Cathy just wanted to check on Mark and tell me she had dumped another week into my account.  Cathy herself is a mother of 20something year old....and she is also a cancer survivor.  I have tried to find out who the others are that have donated hours...I know that Laura, Anita, Patty have but have no names of the others.  To those coworkers who have supported me in this way we thank you.  I sincerely appreciate the calls, cards.  Many of the people I work with were there when Mark was born...they have known him for a long time.  I miss my job but I have a more important job right now.
     So...hopefully we stay out of the hospital tonight. Pray that Schering will help Mark get the chemo he needs and that someday GHP will wake up...oh, don't get me started.

Mark still is having problems with nausea and keeping any kind of fluids down.  He is on IV fluids and seems to be resting well.  Lisa came by yesterday and was going to sneak out while we were napping but I caught her...Mark would have been so mad if he had missed her.  He may not be feeling well but is still wanting to see his friends and family when they can get over.
     It is amazing how many people have signed on to Mark's website.  I sent an announcement about the new site to people in my address book and so many have responded.  It helps remind us that there are some other people out there thinking about Mark.  We read the messages constanly.  Paul in England sent me pictures late last night and now I can start adding pictures to different pages.  I lost a lot of the pictures when my computer crashed before Christmas and getting the files replaced has been an effort. Thanks to everyone who is helping me with this.  I am doing the best I can on the limited time I can work on this.
     It is a pretty day here.....a day Mark should be out golfing.  Don and I are of course going to be staying at home with Mark and would appreciate any calls or visitors to make things more interesting around here.

     I played a mean trick on Mark.  I woke him up about 6am and had him take his Sutent and some meds I knew what help his nausea as well as let him sleep.  He has been sleeping so well since then at it is 1pm now.  It is easier when he is more comfortable.  Don and I know that in a couple of days Mark will be feeling better but right now it is so awful for us.  I think he is feeling maybe a little bit better today but not much.
     I sent out a lot of emails today...almost everyone in my address book as well as people at Mehlville School District that know Mark.  Our Mehlville family has been so wonderful.  The tools of strength and determination that Mark has was taught to him by Coach Heyde when Mark played football.  The coaches have not forgotten Mark and have come to see him on some really bad days.
     I have sent out requests for pictures again. I lost so many in December when my computer crashed. Slowly I am getting some in.
     Will be giving Mark more IV fluids today.  We are trying to keep him out of the hospital.  I spoke with Dr. Tan's office today and they said if he isn't feeling better by Monday morning they will admit him back in the hospital for more IV fluids.  He wants to be feeling better by the volleyball tournament next week.  Events planned by his friends like this give him a goal to shoot for...and he will be there.

     Mark was happy last evening even though he didn't feel well.  Paul stopped by and gave Mark some words of wisdom....and then a special treat was watching a movie with Lisa Tretter who is in town for a wedding.  Lisa has been such a good friend to Mark....she was just the right medicine for Mark last night.

     Hoping today will be better.  We are going to need a long vacation when this is over and Mark is better.

     It has been a hard 24 hours.  Mark is not feeling real well after yesterday's chemo and Mark had very little restful sleep during the night. I was at the all night Walgreens at 3:30 am to get more prescriptions filled to help him rest for awhile.  It is very hard to feel that I am helping him at all.  After Don left for work, I knew I couldn't keep up with all of Mark's needs so I reluctantly called Grandma to come...which of course she did.  I was able to get a few hours rest so I would be ready for whatever Mark needed tonight.  I hate chemo days and how it makes Mark feel.  Makes me feel like a horrible nurse and an even worse mom. 
     Dr. Tan's office returned my very early morning call.  More IV fluids as soon as the nurse comes out to restart Mark's port.  Hopefully, this will keep him hydrated over the next few days.  We just try hour to hour.  Paul Dierker called and said he would come over in a little bit.  Visitors are always a welcome relief and I look forward to Paul's visit.
     If anyone has pictures from Laughs on the Landing, the Kick-a-thon, please send them my way.
     Thanks for taking the time for coming to Mark's site and reading this and maybe thinking about us during the day.  Days like this we really need it....and please leave a message.  We read them frequently during the day, and sometimes like last night, all night long.

     What a frustrating day.  Took Mark early this morning to Siteman and we waited for awhile for him to get his blood drawn, then what seemed like forever to see Dr. Tan, then even longer for Mark to get into the Treatment Center and start his chemo.  Then, we find out that one of the medications Mark was to get is again considered "experimental" and GHP won't cover it.  More phone calls, more faxes, more frustration.  Mark's chemo session lasted much longer (two hours for infusion) than what we anticipated and we didn't get home until after 3:30.  Mark is understandably not feeling well at all this evening....and I am ready to punch someone.
     Butch Marmon came by last night and once again Don called him to thank him for the successful golf tournament...but probably more to get a pep talk from Butch.  Days following chemo are always difficult and it sure helps to know we have such strength in our corner.
     Will keep everyone posted as to how Mark is doing.  Scott Gartner came by this evening and watched the Cardinal game with Mark.  I know that made Mark feel better even if he didn't feel like talking much. 

     Tomorrow Mark goes to Siteman Center to have his blood drawn, visit with Dr. Tan, and start this session's chemo.  Friday will be the last day he takes Sutent for two weeks and I think he is looking forward to two weeks off of it.  Mark has been feeling pretty well the past few days.  Yesterday he got in his car and said he was going to go see his store in Fairview Heights....but decided once he got on the road it was a little too far and he was a little short on energy so he went to see Tim at the Sourth County store instead.
     In 2004 I did not have any desire to plant my flowers...I was determined that this time around would be different....and Don and I have spent the past couple of days "beautifying" the front.  Sure has been good therapy....I am no Lois Brockmeyer but it has been fun doing it.  We have had a few good days where Mark did not need be constantly.....I know he has enjoyed the break. Tomorrow we go back for more chemo and will find out in the next couple of days how well this session will be tolerated.   A new link has been added....Anthony Rivera and Raining Raining Horseshoes.  Anthony is married to my sweet cousin, Susan, who has been one of Mark's dedicated supporters all along.  It was Susan who orchestrated Mark's famous Pebble Beach Miracle Trip.  Anthony is the lead singer for this group and has been supporting Mark at recent events.  Please check out this new page and go to Anthony's website to learn more about this popular group.
     I still can't get that dang slideshow thing to work but have not given up.  In the mean time, I have posted some pictures of Mark's friends on the Friends page.  Shelley, of course, has a page dedicated to just Shelley...  I will be putting up more and if anyone has pictures they would like to see on the website, please send them to me at Barba21885@aol.com

From Barb: To those of you who are reading this....great...you found the new website.  We appreciate the notes left in the Guestbook that can be found at the bottom of the page...not only lends us support but also lets us know that people are finding this site.
     I am certainly not a computer genius but I am slowly figuring out how to build this website.  My biggest problem so far is trying to get the pictures the right size so people can load them easier.  Our Englishman, Paul, is helping from thousands of miles away and I think I will have things fixed soon thanks to his guidance.
     Mark has finally recovered from the golf tournament.  What a wonderful family memory day for all of us.  It was so wonderful to meet all of the people Mark has spoken about over the past couple of years...his fellow employees, his bosses and all the fantastic golf reps from the various companies that supported Mark that day.  No one will ever understand what this day meant to Mark, Don and myself as well as John and Tabby.
     Mark and I went to see Dr. Tan last Wednesday.  I was really nervous...primarily because Mark has been so sick since the last chemo.  The Friday evening before the golf tournament was actually the first time he had been out of bed for more than an hour.  Mark commented to me as we sat in a treatment room waiting for Dr. Tan, that it was the same room he was in when Dr. Tan told him his cancer had returned.  I asked Mark if he wanted to change rooms but he is not as superstitious as his mother.  Dr. Tan felt Mark's belly and could not feel the "fullness" that was there a month ago...excellent news.  Mark's counts were too low to start chemo so we are waiting one week and will go in this Wednesday.  Mark is going to try it outpatient again....and this time it will be for only three days since he was so sick before.
    Sunday Mark played golf for the first time in months and months with his good buddy, Chad Abeln.  Chad has really given his time to Mark during the past couple of months and Chad is one busy guy.  Mark came home with a red head....no Colorado Cuties this time to put sunscreen on him.  I think he is regretting not wearing a hat.  He said "I forgot." 
     He is still trying to eat and hopefully that will improve as the week goes. He takes his last Sutent this cycle this coming Saturday and will be off of it for two weeks.  Maybe that will help.
     Thanks again for the wonderful day at the golf tournament. I will try and get the pictures up as soon as I figure out this slideshow thing......

Welcome to Mark's new website.  Many people were having difficulty remembering the name of the previous website so we thought to make it easier on everyone that we would start one that was easy to remember:  www.markdewalle.com .  Mark, as well as his family and friends benefit greatly from communicating Mark's course in his fight against desmoplastic small round cell.  Hopefully, we will soon have the kinks worked out and everyone will again be sending Mark messages.