Jason's Untimely Thoughts

The kids are in the Bootheel this week, last time with the family down there before school starts again on August 24.

Adelaide went to Cape yesterday to spend the day/night with Eric, Chantelle, Bianca, and Solie.  Although I’m sure she saw Eric too, think girl time was the main point.

AEB Pedi

One final update from me on Everything Changes, June 5, at The Soiled Dove in Denver.

You can purchase tickets for the event here.  If going, please buy your tickets soon before the event sells out.

The online auction is now available here.  There are currently 30 items available, including a couple of Sarah’s prints, some autographed Denver sports memorabilia, a Lionel Train set, Broncos tickets, a ski trip, an African Safari, and more.  Bids will be accepted online until the event starts and will continue to be accepted at the event that evening.  I think there are still a few items to be added, so check back (and bid!) often.

If you can’t attend, don’t find something you’d like to buy, or have done both but are still fighting the recession, donations to the event can be accepted here.

Everything Changes facebook page is here.

All proceeds benefit the Rocky Mountain Cancer Centers Foundation.

Thanks!

A day after writing that summer goals included teaching Adelaide to ride her bike, Adelaide learned how to ride her bike.  Summer goals revised to winning the lottery.

Video of one of Adelaide’s first rides.

Video of Jack riding his bike.

Video of Adelaide & Jack singing ooh ooh ooh ooh ooh.

I asked Adelaide at dinner last night if they’d talked about the Inauguration at school.  She knew all about it, including the names of all involved, and said they’d watched part of it in their class room.

After dinner, then, she wanted to watch more, which was a welcome relief from the Disney Channel.  We watched, both kids wanted to know who everyone was and couldn’t understand why I didn’t know the names of the Honor Guard members, the drivers, etc.  And couldn’t understand that McCain had never been President.  And “Where’s Michelle?”

After a bit, “Daddy, I think you could be President,” Adelaide said.  “I think you should.”  Oh yeah?  “Then we could do whatever we wanted in the White House.  We could jump on our beds.  And play our radio as loud as we wanted.”

After a bit more, she asked “Why can’t I be President?”  You can.  “How do I become President.”  You first have to let everyone know you want to be, then work very hard, then hopefully you’ll be elected.  “Nah, I don’t want to work really hard.  I know, I’ll find someone else to do all the hard work for me, then after the election I’ll show up and say “I’m here, I’m the President!” “

I was on the phone with a friend last night as the kids were going to bed… about 3 minutes into their movie, Jack comes downstairs asking if I’ll come lay with them.  No, go back to bed Jack.  Part of the routine.

About 3 minutes later Adelaide comes down to tell me her “stomach just started hurting really bad.  And it hurts really bad.”  Go back to bed, Adelaide.  Part of the routine.

About 3 minutes later she’s screaming from the top of the stairs saying her stomach is really really really hurting, can I please come upstairs?  At this point I give in, go to the kitchen to put my glass away, then go upstairs.  To find her sound asleep.  Out.  No movement.

Jack is now convinced I’m coming to lay with him though.  So, I do.  “Can we still watch some of the movie?  Just a little bit?  A teeny bit?”  Yeah, we can, but just a little.  One minute.  “No, 5 minutes.”  How about 2 minutes?  “No, 5 minutes.  5 minutes is good, I think.”  I laugh, cause that’s funny.

Since he really has no concept of time, I turn the movie off about 2 minutes later.  That’s it, Jack, time for bed.  5 minutes is up.  “No, five minutes is down.  Five minutes is down daddy.”  Again, I laugh, cause that’s funny.  About 30 seconds later, he’s asleep.

As promised, more videos than anyone could care for of our Christmas days.  Quality really was pretty good, although youtube doesn’t seem to show it.

I’m writing this for Adelaide and Jack, trying to put the story of Sarah’s carcinoid fight in one place for their benefit whenever they’re ready to read about it.  Don’t want to write it, but need to while I can.

In May of 2006, Sarah, Adelaide, Jack, and I were in Malden visiting Papa Bill and Grandma Nancy while Jan was visiting from Switzerland.  Adelaide would have been 3, Jack not quite 1, at that time.  Early on the morning of May 7, Sarah began complaining of stomach pain.  She tried to sleep through it for a bit, but then woke me stating she needed to go see a doctor.  While getting up and around, she got sick and was obviously in a lot of pain.

Bill & I debated driving Sarah to Poplar Bluff ourselves versus calling an ambulance, eventually settling on going to the ambulance shed directly (it was just a few blocks away and we were already at the car).  We arrived at the ambulance shed and woke up the workers.  After a few minutes, Sarah & I were in the ambulance headed to Poplar Bluff, while Bill followed us in his car.  Mom & Jan kept the kids in Malden.  The ambulance driver wasn’t messing around, we arrived very quickly, just as the sun was coming up.  We killed a bird on the way over there, when it hit the ambulance – a story which I thought would eventually become funny but didn’t.

At the emergency room in Poplar Bluff, we arrived just prior to shift change.  This meant it took a while for the doctors to get to her and caused some confusion.  I guess it really meant the first group did their thing, asked their questions, then the shift changed, the second group repeated.  Sarah was in more and more pain, which they finally helped her with.

Ultimately, the pre-surgical diagnosis was a perforated stomach or intestine with the need to do surgery to repair that perforation.  They moved Sarah into the surgery room and moved me to a normal hospital room, shared with another lady, to wait.  After a couple of hours and scarfing down some breakfast/lunch, a nurse came to tell me the doctor would be visiting me shortly, but wanted to meet in another part of the hospital.  So I went to that area, which was completely deserted.  (Should have been obvious they were planning on giving me bad news and didn’t want to do it in front of another patient, but I was oblivious to the clues.)

Dr. Gieselman, the surgeon, then showed up to tell me there was no good way to deliver the news and that he’d discovered Sarah had a tumor in her stomach, had felt around some and found more in her liver, and at this time he believed she had stomach carcinoma.  (Or that’s what I understood and was the reaction of the nurses, it really turned out to be carcinoid, not carcinoma, a very important distinction, from the pathology from surgery.)

While they prepared to move Sarah to a normal room, I called her family to let them know.  They all came from Columbia to Poplar Bluff immediately.  That night, I stayed in the room with Sarah while she came in and out of consciousness.  Her short-term memory was gone, as they told me it would be, so I’d explain where she was, why she was on a respirator, etc.  Eventually, I started to also tell her about the diagnosis and that we were going to figure it all out.  After 4-5 times of that, she started to remember.  While she could only barely communicate because of the medical equipment, it was clear she got it, was scared, but was also handling it well.
Over the next several days she recovered very well.  The intubation came out after 2-3 days, she was able to walk around, and received lots and lots of visitors.  Mentally, although we were all scared, everyone handled everything pretty well and we started to make progress.  The kids, who had been with Nancy in Malden for all this time, came to visit and then Nancy & I took them to Columbia on Thursday, May 11, to help Adelaide get ready for her dance recital that weekend.

I returned to Poplar Bluff on Saturday and Sarah was released from the hospital on Sunday, May 12.  We drove to Columbia very slowly and talked through the news, the scenarios, and the fears.  Two stories I’ll always remember from that conversation – talking about the randomness of events and how things could be different, and I point out that we all could have been in a car wreck on the way to Malden.  (Didn’t go over very well.)  The other was Sarah very vividly pointing out that she wanted to live to see Adelaide go to kindergarten, to see Jack start walking and talking, etc.

From there, we were back in Columbia and begin learning much more.  It finally hit me that we weren’t talking about carcinoma, but carcinoid, so I became much more educated and we started to investigate options both in Columbia and elsewhere.

One of our first stops outside of Columbia was with Dr. Lowell Anthony in New Orleans.   We went down there in June 2006.  Dr. Anthony gave us a pretty grim prognosis.  There was too much tumor in Sarah’s liver for them to do anything surgically, so he’d recommend some other treatments.  His main goal would be to give Sarah five more years, continuing to reevaluate everything as we went.  This was a similar story to what the surgeon in Columbia had told us.

Already scheduled, we also took a trip to Baltimore to visit a surgeon at Johns Hopkins, Dr. Michael Choti.  One of the best things to happen during this was Dr. Choti’s insistence on looking at new CT scans, which we had done at Hopkins.  Those new scans showed significant changes in Sarah’s liver, with reductions in tumor load everywhere – or maybe the initial scans were just not very good – or a combination.  Regardless, we were given a significantly different prognosis then.  Choti also recommended against surgery, but for different reasons than we’d heard previously.  Based on the first scans, the first doctors believed Sarah’s liver was too involved to be helped surgically, basically.  Based on the new scans, Choti believed that the tumors were scattered enough that he wouldn’t be able to get them all out, but they were also small enough to not cause significant concern in the short-term.  This was very good news.

Over the next two years, with the good help of our local physicians, we monitored every sign and scan extremely closely.  Sarah attended two national carcinoid physician-patient conferences and I accompanied her on one.  We continued to read everything we could and learn whatever we could.  Throughout, the tumors either remained consistent or slightly smaller, and the advice from national experts was surgery was the only cure, when you could go in and remove the tumors you should do so.

In the spring of 2008 our local surgeon, who we had only seen that one time in 2006, reviewed the case again and informed us that he now believed he could go in and remove all of the tumors.  All of them.  While skeptical and nervous, we proceeded with some initial testing and began seriously considering surgical options again.  Ultimately, we decided to visit again with the New Orleans group for their opinion, this time visiting Dr. Eugene Woltering.  At that visit, in May of 2008, we met with both Dr. Woltering and Dr. Philip Boudreaux, the surgeon who would be operating.  They reviewed everything we were asked to bring and recommended surgery on Sarah’s liver, probably removing lymph nodes also, and exploration from there to find/remove any other tumor they could.  We ultimately scheduled this surgery for June 26, 2008, at Ochsner Medical Center in Kenner, Louisiana, just outside of New Orleans.

While we were both nervous about the surgery, it fit the plan that we’d heard all along.  Absent the stuff just disappearing on its own, which had always been Sarah’s hope and one I now wish we’d have given more time, whenever someone could go in and remove the tumors, that would be the plan.  Although I’ve had people tell me they think Sarah knew this was coming, I simply don’t believe it.  If for no other reason than she’d have never willingly left the kids.  Never.

The afternoon of June 26 brought extremely good news.  Dr. Boudreaux and Dr. Yi-Zarn Wang performed the surgery and were clearly pleased with the results.  They had removed absolutely everything they could find, didn’t really find as much as they had expected to, and all signs for a recovery were very positive.

There were considerable peaks and valleys while we were in New Orleans.  But, things looked good enough that Nancy & Bill took Adelaide & Jack back to Malden and Sarah’s parents and brother each returned to Columbia for brief periods, as we were all confident she would be home soon.

Ultimately, of course, things changed.  I’ll say I woke up the morning of July 7 still believing she was coming home.  My belief, based just on watching things in New Orleans daily and watching Sarah recover from two births and the previous major surgery, is this:  Sarah recovered more slowly than people expected.  That was partly due to her requiring more pain medication than normal.  The first day or two, she was unable to take deep breaths because of the pain, which was never under control.  Ochsner had (may still have, I don’t know) extremely limited ICU visiting hours, which made the situation worse.  The minute I saw Sarah the next morning I knew she was still in pain, information the doctor did not have.  Despite getting the pain under control, Sarah had likely already developed lung problems, very likely including an MRSA infection at that point.  Whether MRSA was in play at that point, it definitely was later in the week.  She was moved off the ICU floor for one night, but breathing problems became considerably worse over time.  Those breathing problems continued to worsen, no matter what efforts were tried, until we lost Sarah on July 7, 2008, at the age of 36 years and 1 month.  She died in the early afternoon and I was with her pretty much that entire day, or at least as close as I could be considering the circumstances.  Sarah’s Mom & Dad were also in and out as much as was feasible.

Sarah’s mom, dad & I returned to Malden immediately, arriving early the morning of July 8.  I went to bed with the kids and told them the news after breakfast that morning.  I called as many of Sarah’s friends as I could manage and responded to text messages and emails as we drove from New Orleans to Malden.   The outpouring of love and support was genuine, generous, and unbelievably widespread.  Everyone was in pain and missing Sarah.

Adelaide was 5 at the time, just preparing to enter kindergarten that fall.  A very bittersweet thing, given the car conversation earlier.  Jack had just turned 3.

From then until now, the kids only speak of missing mom, of things she liked or the way she would do certain things.  I fully believe Adelaide is trying to protect me, much as I’m trying to protect her.  I think Jack just misses his mom, but doesn’t understand the whole thing.  They’ve neither one never had a break down, although I almost wish they would.  The same could be said of me, however, minus an hour or two in the hospital in New Orleans.

With perfect hindsight, of course I’d be vehemently opposed to that surgery now.  Sarah was on course to be perfectly fine for another few years at least.  On the drive to New Orleans we discussed how we’d made it to seeing Adelaide start kindergarten; this surgery was to make sure we saw the kids’ children start school.  But, given everything we knew to be true and the considerable advice from considerable experts we heard everywhere we went, the decision to have surgery was sound.  It just turned out wrong wrong wrong.

The story isn’t complete without mentioning the continued outpouring of love and support and tributes to Sarah that has occurred throughout the ordeal.  From people taking care of us immediately after the diagnosis to the numerous memorials and tributes that continue to happen, it is clear that Sarah did win, as I’ve always labeled these posts.

Traffic Light

Was driving home from CDC yesterday with Jack when we pull up to a traffic light similar to this, at which we’ll turn right. After explaining to him what insurance for the road is all about after hearing a commercial on the radio about Van Insurance from £149.

Jack says:  “That light has two arrows.  One pointing this way, which is to our house.  The other points up, for spaceships.  Some spaceships land on the road and fly up into the sky.  Some spaceships are strong and fly up in the sky.  Sometimes spaceships don’t fly, they just stay on the road.  But some cars are strong too.  The strong cars just run over those space ships.  Boom, vroom, crash, boom. vroom.  Our truck is strong.  Boom, vroom, crash vroom.”

Watch out for spaceships.

I’m downstairs paying bills in the dark tonight, which is a pretty good way to pay bills really, when I hear Jack crying.  I run into him on about the third stair, he says he wants me to come lay down with him.  Adelaide is asleep and the movie is over.  (This is a change, normally he starts screaming “Daddy!  Daaaaddy!” the minute Adelaide falls asleep.)

We go lay down and he starts talking to me.  I tell him I wish his mommy was here, he says he does too.  “Where did mommy go again?”  I ask if he remembers her going to the hospital, he does, he says she died, but “Where did she go?”

I tell him she’s in Heaven.  “Where’s Heaven?”  I mention the stars and sky and say I believe she can come around us still, we can talk to her, maybe she can talk back to us, and maybe she can come visit us in our dreams.  “Yeah,” he says, “and I can hold her cheek.”

For as long as I can remember, Jack uses “hold your cheek” as a source of comfort.  Might reach up during the night, certainly while falling asleep, or just between bites of a PB & J sandwich, and put his hand on your cheek for a few seconds (or minutes).

I ask if she visits him in his dreams, he mentions holding her cheek again.  I ask if he’s held her cheek lately, “Yeah, downstairs on the couch, when I watch a movie.”  Which happens every morning and afternoon.  No matter whether current or memory, it makes me feel good that he remembers her and remembers her as a source of comfort.  Makes me cry too, of course, but am glad he remembers.

My mom sent a thank you note to the folks at Cafe Adelaide in New Orleans, especially Courtney, who helped tremendously with materials for AEB’s birthday party.  It included a nice run down of what happened, so posting it here.

I’m writing to give you all the details on Adelaide’s party.

But first let me say that I hope all of you were able to weather the most recent storms without too much damage and that you and your families are all safe and back in your homes and businesses.

We can’t thank you and the Cafe Adelaide enough for all you did.  The things you sent were just unbelievable, especially the placemat you designed.  As you will see, “great minds think alike”.  Your kindness helped us all through this.

Adelaide had a great 6th birthday party at the Country Club on Sunday, Sept. 21, just a few days shy of  her actual birthday on the 25th.  I’m putting a package in the mail to you today that has some things from that party, including a few photographs.

The club has a beautiful brunch on Sundays, and it worked very well for the girls.  As you will be able to imagine from the photos, they created quite a stir.  Adelaide had selected 3 special friends to accompany her for brunch.

Jason & I arrived first and put out the decorations.  We used the placemat that you designed & printed it back-to-back with a placemat that a great friend/next-door neighbor/almost sister to Sarah had designed, even before we received your box.  They worked wonderfully together; each of you had used a different color and a different photo of Adelaide.

Tables were decorated with gerbera daisies, Sarah’s favorite, and we put a ribbon across the table to denote “special service” (just like we received in New Orleans).  Each girl’s place was marked with a small clear vinyl purse filled with a diamond ring big enough to choke a horse, pink sugar swizzle stick, “Hannah Montana” compact mirror,  lip gloss, and a photograph snow globe.   As you will see from the photos, each purse was “fancied up” with your Cafe Adelaide ribbon and other ribbons, with the girl’s name on them.  We had a long, glittery scarf on the back of each chair and a pair of  “classic” rhinestone earrings, chosen by Adelaide for each girl,  for her to put on when she arrived.

The service staff was advised about the party, & they had another sugar swizzle stick to put in each girl’s drink when it was served.

Sarah’s mom & a friend chauffeured Adelaide to get each of the 3 guests.  Adelaide presented each friend with her own fancy hat as she was picked up.  Daddy did the valet parking when they arrived at the Country Club.  He & I left shortly after the “entrance” into the country club, but all assured us that it was a grand time!

After brunch, all came back to Adelaide’s house where many other friends and family were waiting.  Jason had rented a “bounce house”, so the rest of the party was just as much fun for boys and girls alike as the first part.  We used your placemats, napkins, ribbons, etc., here also.  Your bread bags were  “party-favor” bags, something that Sarah always worked really hard on.  This was one of her first ideas on the party theme.  Your matchbooks were set out, and the adults in the crowd took them for souvenirs.

But . . . one of the really special items that I’m sending you is OUR Adelaide matchbook.  Same neighbor/friend/almost sister and Sarah’s mom designed and made these; these are something you will just have to see to appreciate.

I’m mailing these items to you because we want you at the Cafe Adelaide to see what a grand thing you all helped with, in such a huge way.  Please share this with everyone there, and please pass our most sincere appreciation to all who helped with this project.   Sarah was such an amazing person, such a mom, and it’s so great a loss.  It helped to know that we were doing what she wanted for Adelaide on that day.

Again, our heartfelt thanks for your kindness and for all you did.