It has been an uneventful week.  Nothing new really happened, nothing to change anything.

I spent a good deal of time thinking of Mark.  I think about him all of the time, but driving to work Friday night I couldn't help the tears.  I kept thinking of all of the wonderful Fridays I spent without sleep and then staying up late into the night....all because of high school football.

It became my passion because it was such a passion for John and for Mark.  I still really don't understand the "plays" or what each position is supposed to do.  I just know that for a few hours on Friday evenings, many people would gather and cheer on a bunch of teen age boys.  Sure was fun.

I hope that everyone gets as much out of their passion as my boys did. 

I thought about the parents who hopefully were excited that it was game night.  I thoght about the moms and dads who were getting things ready at concession stands.  I loved every minute of it.  I would spend a great deal of time trying to trade off Fridays so that I could be home to cook for the team.  Sometimes, but rarely, I was able to grab a nap during the day.  By the time Mark was on varsity, I had it down to a pretty good system.

I sure do miss those days.  I never had one bit of trouble in all the years that I had 20-30 boys over for dinner on Friday nights.  Each one of them belonged to me.  They would bounce in my house (for some reason...my own sons were never the first ones in) and when they were done, they would lounge around our small home.  Some would take a nap.  Some would do their laundry.  But always, always...when Don would pull up in the driveway with the truck.....they would immediately start helping him unload his work tools and load up the supplies for the concession stand.  Never failed.   They also never left here without thanking me.  Bunch of classy young men.

Those young men make my heart melt also because several years later....scattered throughout St. Louis as well as the country...they came back to us to help us with Mark.  The last people at Mark's bedside outside the family were Mark's teammates.

Now, the house is empty.  The memories are still here and always will be.

The other day, Don and I were reorganizing some.  We cleared out the storage area under the steps and got things in better order.  All that is there are containers filled with Mark's clothes.  There is a huge bag of just his shoes.  Both of commented that we can't let these things go. 

On top of all of these containers remain a clear vinyl clothing bag.  Zipped up inside are Mark's varsity satin football pants and his football shoes.  He refused to return the pants (and yes, I did pay the Athletic Office for them) and refused to let me wash them.  "They have the Jungle in them."  The dirt from the football field from his last game is still there.  I suppose some day my Tabitha will have to clear out that storage area when Don and me are gone....and only then will those pants finally leave this house.

Our lives are so different now.  The house is quiet.  Don no longer has to get things together to go to work.  We are adjusting slowly to living on my paycheck until his disability is settled.  He still has several days a week that he doesn't feel well and his joints are painful, but at least they are not being abused by the hardwork he has done for 37 years.

The one constant, the one dark cloud that hangs over us is that Mark isn't here.  I know we are doing the best that we ever will be.  I know we work hard at adapting to losing him.  I pray everynight that I will dream about him.  I don't have to relinquish anything, because I have always had him in my heart.  It just isn't the same.  It never will be.  There is always someone missing.

The silence of not having Mark around is more deafening than any sound.  The emptiness just never will be filled.

I worry about others forgetting about him, but then I get a card in the mail that reminds me that just isn't the case. 

I love talking to my mom on the phone because rarely a conversation with her happens without Mark being mentioned.  We are usually laughing about what his reaction would be to something. 

Tonight, Don fell asleep early.  I have spent the evening wishing so much that I could call Mark and just chat.

For me, that would have been the ultimate touchdown.

I apprpeciate the note from Kay (not sure which Kay this is!!!) regarding my sister, Debe.  She is doing well and so far her leukemia has been under control.  The type of leukemia she has can stay "quiet" for a long time, or next week blow up in her face.  We will always be on alert for changes for her.  Although perhaps not the only reason I chose not to go to VA....but the main reason...is that I don't know when and if Debe will need me.  I am better at Barnes if that need arises.  Thank you for asking about her.....she is adjusting to no kids in her house right now since her youngest went off to college last week.  I believe at this time that is causing her more turmoil than anything, but she is Debe and is coping well.

Michael has adjusted to school.  Even has a few positive things about it.  I guess the first day of school is a little overwhelming for a first grader. 

I recall getting a call at work about 7am one morning.  I was told "Mark" was on the phone.  "Mom, i have a headache and don't feel well."   My response:  "Mark, it is the SECOND day of school...get dressed and go."  Throughout the years Mark thought of all sorts of things do get out of going to school, but for the most part he did go.   It wasn't until years later that I learned he and John used to give each other "Free Days" from St. Francis.  They would cover for one another, get each other's homework, and go talk to Father Edwin personally to tell them one brother was sick and Mom was too busy at work to call in for them.  They not only pulled one over on Don and me, but Father Edwin as well.  I will have to think about it, but I am pretty sure this qualifies for some sort of sin.

Mark acted as if school existed for one thing only:  to have a pool of people to build sports teams.  Make that two...also a place where he could meet girls.  He met some fabulous girls at school.  There are many times I am down, and I will get a letter, a card, an email or phone call from one of these girls.  They sustain me when I feel the bluest.

Michael also had a wonderful 7th birthday.  Tabby called me the day of his "kid party" and asked if I could pick up some balloons.  I waited for over 45 minutes for the balloons, and then found out they forgot to put the stuff in them to make them last longer.  I was not going to wait another 45 minutes, so they refunded my money for that stuff, and gave me 5 extra balloons.  He had helium balloons everywhere attached to the fence in their backyard.

The next day Don and I went over to John's house.  In our family, birthdays are an event and it was no different for Michael.  His birthday actually lasted 4 days.  Cardinal game on Friday, kid's party on Saturday, family party on Sunday, and then his actual party on Monday.  I noticed when we went over there were no balloons.  I asked how long they lasted without that special stuff.  John said to Michael "Tell granny what happened to your balloons."  Michael then told me he had all his friends help him let the balloons go to Uncle Mark.  A gift for Mark on his nephew's birthday.  It sure warmed my heart.

I always try to think of something special to give as gifts for the boys.  This year I knew I wasn't gonig to be able to come up with something new....until I watched Michael at the Blarney Stone after Uncle Dick's funeral.  He just loved the DeerHunter game at the Stone.  So, I made it my mission to find an original Nintendo game system.  I found one on Ebay from a company that rebuilds them.  Michael loved it, but it is quite possible John loves it more.

I watched as John carefully explained to Michael how to put in the games, how to use the controllers.  I watched as Michael played, and Daniel whined about not getting his turn.  Sure enough, John did for Daniel what he did for Mark 24 years ago.....set up the game for one player and gave Daniel the second controller.  Daniel sat there and played, although he wasn't really playing.  John then put in Mario Brothers and we laughed as we watched his face as he was playing.

John and Mark had a Nintendo.  A couple of weeks before Don and I got up in the attic to see if we still had it.  Markie was only about 4 years old (just like Danny) and always wanted his turn.   John told Daniel the exact same thing I told Mark years ago "Your brother will be in school and you will be able to play all day without anyone stopping you."  Mark and me would get home from taking John to school, and he would head right for the Nintendo.  I got to know the music for Mario Brothers and could tell how far Mark could get.  For days, he struggled through the different levels.  Then, one morning, I heard the music that played when John made it to the undersea level.

I went into the living room, totally amazed that this 4 year old had figured it out.  He was very pleased with himself.  I asked him how he did it and he tried to explain it to me best in his 4 year old vocabulary.  He was sitting on the floor in his pjs.  He showed me how he could "make the guy run" then make him jump.  He showed me how he could make him hop over things.  As he was doing this, his fingers pushing buttons on the controller, his arms would raise up as if he were jumping with Mario.  Then he said "Sometimes it helps if you stand up".  So much jumping of the arms just made him stand up.  I laughed then, and smile now just thinking about it.

I was truly enjoying watching Michael's Uncle Dave and John play Mario Brothers.  The music brought back so many memories.  Finally, the undersea music came on......and I couldn't help but have tears in my eyes.  That was music I associated with Mark.  I am sure Mark was smiling.

Today someone made my day. We received the most beautiful card and it had a dragonfly on it.  No signature and I tried to trace the address but didn't have any luck.  It was so thoughtful, so beautifully written.  "I also wanted to let you know that even after 2+ years later, people you don't know still think and pray for you."  That is such a special gift.  As I have recounted here many times, I just don't want Mark forgotten.  To the person who sent the card.....please know that Don and I have read it over and over again.  I look forward to showing it to John and Tabby.  It will go into our Mark curio cabinet.  Thank you so very very much.

A week or so ago I received a book from Nathan Co'x mom.  He is the young man who also had DSRCT and was a patient of Dr. Tan's.  His mom recently left a message on the guestbook.  Since that time, we have spoken on the telephone and exchanged numerous emails.

The book she sent me was written by a man who lost his 24 year old son in a moutain climbing accident.  It is titled "Lament for a Son."  I don't usually read books of this sort.  I tried to read grief support books after Mark died.  I didn't find them helpful.

I suppose it was because there was so much psychoanalytical crap that went on with a lot of them.  I understand the grief process, the depression, the horrendous sense of loss.  I explored every means to deal with what had been placed in our lives but found little comfort in the misery of others.  I also didn't find to much help in most grief counseling (other than Angel Moms....the one perfect help for me).

What I normally was able to take away from those readings was "That is sad.  That is nice they are trying to help others.....but this book is not about my Mark.  My Mark was special."  I know these people feel that their children were special too.  I just didn't find any help in their long dissertations.

Not wanting this to sound like a book report, I found this book to be different. Short, sweet.  General statements about his son that I have spoken of here.  Some feelings I have never been able to put into words.  No philosophical theories.  Just simple statements from a grieiving father.  What makes it even more interesting is this father is a professor emeritus of philosophical theology at Yale Divinity School.  One would think it would be "preachy"  It is not.

I find myself underlining much of what this man has written.  Some pages are just a paragraph long...but they say so much.  So many of the comments is what I have said here and it gives me something to think about once again.

I will be from time to time, putting down what this man has written and going over again how these statements remind me of my own feelings and thoughts.

At times I feel that I have run out of feelings.  I have run out of things to say.  "It's so wrong, so profoundly wrong, for a child to die before its parents."

Nothing else has to be said......that pretty much says it.  But, this gift from another DSRCT mom, is giving me a chance to think about what has happened, and that maybe Don and I are not much different than what has been written.  We feel certain things that only Angel Parents feel.

I appreciate the gifts....the letter from Lisa, the special dragonfly card that came today, Michael sending his birthday balloons to Mark,  the memories of brothers playing Nintendo....and a book that I could have easily written.

I appreciate the chance to read, think about, pray about, the changes in our life.  I appreciate the gift of a book that validates what I am feeling.

An hour doesn't go by that I am not thinking of Mark, of wishing I could talk to him for just ten more minutes.  I need to spend more time here writing what I feel as that is closest I get. 

Today Michael had his first day of school.  I don't think he enjoyed it very much.  I know it is going to be an adjustment for him, being in first grade and having to stay at school all day.  He doesn't really know the kids that well and had some difficulties finding lunch companions.  Nothing like being at home with Mommy, Danny and Joey.

I think, perhaps, he was a little homesick but doesn't realize all of that just yet.  I just know, in time, he will find his space and enjoy school more.  Maybe it will be better when he knows Daniel will be there in preschool a couple of days a week.  That should make it better.

Just hope day two goes better.

Last week we had another campout in the backyard.  I have no idea how the boys did it, but they talked their Papa into bringing out the little TV so they could watch cartoons in the tent.  Not really camping, now, is it?   Papa's back wouldn't allow him to sleep outside with the boys....but Granny did.  It was a beautiful night.  By ten pm we were all asleep.  Then, Michael woke up around 1am and wanted to go inside.  We woke up Danny and the three of us crawled into the spare bed.  All tucked in and comfortable.

Then, around 430 am I woke up.  I listened to the boys breathing, listened to the sounds of a quiet house, and listened....oh, Sweet Jesus....to the RAIN outside.  I ran outside, at 430am, in my nightie, trying to rescue that darn little TV from the tent.  I didn't like the idea in the first place, and the three who thought it was a grand idea were all nestled asleep inside.  What a mess.  I still don't know if that TV is going to work.

But, what was positive about that night has wrapped me up since.  We didn't have any sleeping bags so Don went inside to find some blankets.  He brought out Mark's heavy bedspread/comforter.  It was perfect.  Mark loved this comforter.  His grandmother bought it for him to use as a bedspread for his Memphis apartment.  He was always wrapped up in it and looked like Yoda during those last months.

I tried to buy him a lighter one during that time.  It was really nice but he didn't like it.  He said it felt like he was sleeping under a placemat.  Back to the heavy comforter.

It has been put away since Mark died.  We have not had it out at all.  But since that rainy campout, I have used it everyday.  I know I have dreamed about Mark since I started using it, just can't remember the content of the dreams.

It is nice, though, to be wrapped up in Mark's comforter.  Something is very comforting to be to be wrapped in something Mark.

 Yesterday there was a posting on the guestbook from someone new.  I never have met this person, never would have recognized the name.  Yet, there was a very special gift given to us one afternoon, and now, I know who it was from.

When Mark first found his very small lump...it was november 2003.  He had surgery in December, and it was another six weeks before we learned that he did not have testicular cancer, but that horrible desmoplastic small round cell tumor (DSRCT).  I remember the oncologist from Barnes who called us that terrible January evening and said "I have heard of this, but have never treated it."

Where does one go from there?

I know what Mark did.  He quickly decided to get out of town.  At first he was going to go to the Caribbean (hence, the reason Don and I are so drawn there) but we talked him out of it.  We decided that he shouldn't be out of the country.  Mark quickly talked two of his friends in to going to Las Vegas, and within days he was in Vegas.  He had a marvelous time.

Back home in St. Louis, things were different.  Don and I spent days on the telephone.  There were several people helping us try and find someone who could help Mark.  We had literally five scheduled appointments with oncologists throughout the country....Houston, New York, Arizona, Minnesota, and Los Angeles.  We were so overwhelmed it was incredible.  I cannot recall being so exhausted.  Phone call after phone call.  Each having their own perspective, each thinking they could help Mark.  We just didn't know where to turn.

We weren't trying to find a great deal on a car for him.....we were trying to save his life.

We planned a trip to Mayo Clinic.  Mark asked where the Mayo Clinic was and when we told him it was in Minnesota, he said "Damn!  I am going to freeze my ball off there!!"  It was so funny.  He told us that what we should do is just put his name on Ebay and let the top bidding oncologist treat him.  Sounded like a good idea.

So, we were planning to go to Minnesota....or maybe it was New York....or could have been Houston.  Anyway, I get a call from his Aunt Deb from work.  She had been talking to a doctor in Children's ER and they immediately   decided that Mark should be treated at Children's.  There is so much more to this but isn't really important for this post....let's just say that we finally had someone in town who knew DSRCT.

I had to call the administrator of the hospital and ask for Mark to be treated there.  He was 21 and too old for Children's, yet his cancer was so rare and considered to be an adolescent cancer, that they immediately made arrangements for him.  The adminsitrator called me back and gave me our appointment time.  Finally, everything was set.

Then the weekend passed and Monday this VP of Children's calls me again.  She said she was calling me as a mom, not an administrator.  She said that Mark could be treated at Children's, but she so happened to be at dinner party over the weekend and was able to find an oncologist in the adult setting that we may want to see.  She had set an appointment for Mark, just in case.

How did she find this new oncologist?  She had been talking about Mark and the rare cancer he had....at this dinner party.....to Dr. Tan's wife.  When Dr. Tan's wife said he had treated this cancer, a connection was made.  I think that in itself is pretty magic.

One just can't go to the Yellow Pages and look up "DSRCT" doctors. 

I remember I started crying, saying what are we supposed to do?  She told me to see both, and to go to the other cities if we felt it necessary.  She only wanted to give us more options....again "I am not doing this as an administrator, I am doing this as one mom to another."

We saw the pediatirc oncologist.  I appreciated so much the efforts and time the oncology staff at Children's did for us.  The oncologist was blunt, told us we had less than 18 months, and not to waste time having Mark doing any sperm banking.  We left there devastated.

We had an hour or so in between appointments.  We took Mark to Tom's Grill in the Central West End.  Mark told us "I am going to sell my car, I won't be able to keep up the payments."  We wanted to dispel any of the traumatic news that Dr. Hayashi had given us.  We wanted somehow, some way to give him hope.  Both Don and I told him to forget about selling his car, he was going to need it when he got better.  I don't think it made Mark feel any better.  I know that he knew we were just grasping at straws....that the only way it would be any better if some doctor told him differently, or someone gave him some sort of hope.  We weren't happy with the pediatric aspect....the little bald kids really bothered the three of us.  If only we could find someone who could show us some sort of confidence in treating Mark.  Someone who knew what he had.

We went then to see Dr. Tan.  His perspecitive was very hopeful.  He had a different approach to treating Mark.  Whereas Children's wanted to open up Mark's belly and remove I don't know what  ( he had NO tumors...no visible cancer anywhere), Dr. Tan wanted to start chemo right away.  Then, he told us something that gave us hope.

"I have treated this before.  We have had some very favorable results with a gentleman from Montana.  His disease is not where yours is.....he came in with large tumors and having a great deal of pain.  You, Mark, have no evidence of disease.  I feel that by giving you chemo now, in the pristine position you are in, that we can try and keep those tumors away.  I would like to start as soon as possible....but I won't start until you are able to do sperm banking."

So much hope.  Dr. Tah had in a very short time, given us a treatment plan that included preventing tumors, but also giving Mark something to plan for the future.  I remember thinking that if he had helped this gentleman from Montana...that he had confidence that he could help Mark.  Dr. Tan and Don and me, left the decision totally up to Mark.

"Let's get going," was Mark's response.

I heard Mark say a number of times how Dr. Tan had experience with DSRCT.  I know part of Mark's faith in his treatment was his faith in his doctor....and he had faith in his doctor because of this person from Montana.

I had often wondered where Dr. Tan met this person from Montana.  Did he practice for a time there?  Did this person hear about Dr. Tan and come to St. Louis?

And then, finally, yesterday, those questions were answered with a posting on the Mark's guestbook.

The "gentleman" from Montana was Nathan.  Today, is the anniversary of Nathan's death.

It pains my heart, not only because I know the hurt his family is feeling today, but also because the first person who instilled hope in us and in Mark....is not here for us to thank.

After reading the post, I immediately sent an email off to his mother.  Don and I scanned the Internet trying to find out how old Nathan was, what he looked like.  After a few searches, we found a beautiful picture of a 22, 23 year old young man.  http://www.landforlearning.org/Scholarships.htm  Scroll down to the bottom of the page to see the "gentleman from Montana" who gave us the gift of hope, gift of confidence.

Think of Nathan's family today.