6-30-11

Dear Cole,

The last few nights I have had the opportunity to watch some great movies.  Specifically I have watched Shawshank, One Flew Over the Cookoo’s Nest, and Few Good Men, and I have started thinking about great movies. 

Great movies have a couple of characteristics that identify them as great movies.  Now movies are art, and art is necessarily subjective so when determining what makes a movie great, personal opinions have to be disregarded.  Or rather we mush regard the opinions of the masses who may like some crappy movie just because it has a lot of explosions and boobs the same as some obscure movie that the film elite decides is an important movie. 

In determining whether a movie is great there are really only three characteristics that you must look for.  Number 1: if you happen to run across a movie that you have not seen for a while and it is on commercial television, you find that you have to watch it, irregardlessly of the time that it comes on (and in fact the later it is the higher greatness scale it has).  Number B: there is some great character that is usually not the main character (think Big Jack in A Few Good Men).  And 3: there is a line in the movie that given the appropriate set up, you can’t resist saying it.

****

As you can tell this isn’t my normal blog post because since Tuesday Cole has been at UCSF, and I have not seen him.  I am trying to hold it together, but not seeing him, and not being there to help is killing me.  Fortunately I will be there tomorrow night.  I miss my son.

After I get there tomorrow, I will try and put together a good update.  For now; however, please raise your glasses and toast Cole, winner of nine academy awards.

6-27-11, another one

One love
One blood
One life
You got to do what you should
One life
With each other
Sisters, brothers
One life
But we're not the same
We get to
Carry each other
Carry each other

That’s right baby, we are set for UCSF, and we are in the one cycle group.  For those of you keeping score, that means that Cole could be home by the end of July.  Assuming all goes well he will take August off, and then start radiation in September.  Following that he will have 6 cycles (similar to the previous Chemo cycles with respect to duration) of immunotherapy.

Now I am not sure if I have become sentimental throughout this whole process or if the universe is talking to me (or maybe it always has and I am just now listening), but the last few days have been very strange.  Please allow me to elaborate.

Since the initial diagnosis experience, I have been doing a pretty good job of keeping it together.  We have a plan.  We have an enemy.  We execute the plan.  We defeat the enemy.  It is simple, and it was working.  So then you can understand how badly I was hit when Dr. Taggart first told me on Thursday that the MIBG reading showed new, active cancer cells.  This was not part of the plan.  Eradication was the plan, not growth.  WTF?

Dr. Taggart did say that she disagreed with the reading, but by then the box had been opened, and in my mind, the worst case scenario had become a foregone conclusion.  To make matters worse, we were not going to find out if the cancer had spread, much less if we were going to be able to start the UCSF procedure, until Monday.  Fortunately Elisa kept us sane, or at least stopped us from going completely crazy, by planning and then flawlessly executing a weekend of awesomeness.

Despite that, I was on pins and needles all day today.  There were so many things that, if just one had not gone our way, would have derailed us.  First Cole had a dentist appointment to fill some cavities.  If problems arose, or if there were complications, or if the wind decided to blow the wrong way, UCSF gets delayed.  As always, Cole sailed though with such ease that I am beginning to question whether I am just becoming a paranoid crazy person.

I got word of the successful dentist appointment at around 8:45ish (for exact times please ask Elisa), and then had to endure my own overactive paranoid imagination until his clinic appointment at 2.  Again, of course (now I am beginning to think he does it on purpose) good news came our way.  Not only was there no new active cancer cells, and not only were we cleared to start at UCSF tomorrow, but we were even randomized into the one cycle group (which means that this phase will be about 8 weeks shorter than if we were in the two cycle group).

So that is kind of the factual world that I have been living in.  Now two things have happened during this time that have perked my ears up like when our dog, Charley, hears….well whatever it is that he hears that make his ears perk up…..

The first thing that happened was yesterday after a dinner of Chinese food, we all opened our fortune cookies.  Elisa’s, Logan’s, and mine were all unremarkable; however, Cole’s read as follows, “Determination will get you through this.”  Talk about freaky.

Then, and this one was a little bit more obtuse, I was watching Shawshank Redemption (awesome freaking movie.  It is one of those movies that I never think about making an effort to watch, but then when I happen to watch it, I think to myself why haven’t I been watching this movie every day) and the hope concept caught my attention.  For those of you who haven’t seen it (you know now that I think about it, I am not going to give a plot summary for this one.  If you haven’t seen this movie, shame on you).  So anyway right after Brooks’ demise, Red talks about the danger of hope.  After his lines, I found myself applying his ideas to my life.  I do understand the danger of hope.  Within the context of cancer, hope can set you up for the destruction of your mind/soul/emotional stability/whatever.  Assume the worst and you can only be pleasantly surprised.

Towards the end of the movie (Buxton Hay fields, long wall, black obsidian), Andy tells us otherwise.  “Hope is a good thing, maybe the best of things, and good things never die.”  True dat.

If you have seen the movie, go watch it again.  If you have not, go watch it (Cole demands it).  In the meantime, raise your glasses and toast Cole, male model.

6-27-11

Dude, killer weekend.  Elisa planned a bold weekend that many of the naysayers, critics, and various other naredowells thought could not be pulled off.  Oh how little they know my wife. 

We started off Saturday with some aquatic education time for Logan.  He really is getting into swimming.  I think is favorite part is doing the dive off the wall.  After that we ran up to Crissy Fields for baby Vivian’s first birthday.  The weather started out cold, but warmed up before too long.  They boys enjoyed the beach, although Logan has acquired his father’s (very healthy, sane, and frankly reasonable) respect (no it is not fear, please stop interrupting) for the ocean and would not go near it. 

After the party we headed home for a little rest time before heading out to our next adventure, bowling.  Taking the boys bowling was very fun.  To begin with I somehow was able to get the lane and the boys’ shoes for free.  All we paid for was our shoes.  I, of course being the bowling pro, barely missed bowling a 300 (just missed it by about 180 points).  Elisa and the boys were not far behind me.  During the, highly competitive, game, Elisa had the great (great does not do it justice, more like legen……….wait for it……….dary) idea of ordering some of the snack bar nachos.  Mmmmm stale chips and melted plastic cheese……….(insert drool here)…….

Of course all great bowling adventures (except for maybe in ’74 due to the strike shortened year) must be concluded with a trip to Denny’s in order to eat breakfast for dinner.  Denny’s was everything that you could expect right down to the old lady at the front with the chains on her glasses, 50s style.  The temptation to call her Flo was almost too much to bear.  I refrained, mostly because this weekend was about the boys.

After Denny’s it was back to the house to finish up the preparations for Outside Movie night.  In order to illustrate how awesome Elisa is and how she intended to leave it all on the floor this weekend, we painted a big white square on the side of the house which was going to serve as our movie screen.  Saturday’s feature presentation was Ant Bully.  I laughed.  I cried.  I drank scotch (which may have caused the first two). 

The kids were in bed by 10:30 pm, and then back up to continue the weekend of awesomeness.  On Sunday we took the boys to Gilroy Gardens, a very fun theme park that is designed for people that are approximately ½ the size of me and roughly 1/10^th to 1/5^th my age.

Logan loved it.  With him you never know if you are going to get the scared kid or the adventurous kid.  Fortunately we got the adventurous kid.  It helped that he has a big brother that loves all kinds of rides.  We went on nearly every ride (and even rode the train, at Logan’s very persistent insistence, twice), vastly overpaid for food, and generally had a great time.  We even ran into some folks from the neighborhood (Village representing)

The drive home was quiet because everyone (even me a few times while I was driving, but never for more than 10-15 min….don’t judge me) fell asleep.  We decided to finish off the weekend by ordering enough Chinese food to feed 2133245365409845 people (yum yum leftovers).  All in all a crazy awesome weekend.  The California Baker Boys thank Mama for it.

This morning will not be quite as much fun.  To begin with, as I am writing this blog I am stuck in a BART car somewhere just outside of Daly City.  Problem with the track.  I am thinking about starting to scream and act like the car is on fire just to see what happens.  Maybe I will make the news.

Cole also has a dentist appointment today to have two cavities filled.  Apparently Chemotherapy reduces the amount of saliva in the mouth which increases the amount of cavities (another in the long list of reasons to avoid Chemo unless you really need it.).

In addition we are still waiting on the green light for Operation I Really Hope That UCSF Starts Tomorrow And That We Are Randomized For The One Cycle Group.  We have an appointment at the Kaiser clinic this afternoon, so hopefully we will know by then (although I plan to start bugging them much earlier in the day to see if we can get the ball rolling a little faster).

In the meantime please raise your glasses and toast Cole, Graphic Artist.

6-24-11

So anyway, like I was saying…yesterday we runned up to UCSF to sign all of the consent forms for the transplant procedure, and we met with the Doctor.  I love meeting new doctors regarding new medical things (things is the most eloquent word in the English language.  It just gets a bad rap.  Don’t judge lest ye be judged) because we get a whole new set of worst case scenarios to mull over.  Some people would find that disturbing and emotionally draining, but not me.  I look at it like….well…no…it sucks, and I am tired of it.  I do; however, appreciate that the worst case scenarios were always preceded by the word “rarely, and not by the phrase, “what will likely happen.

We also swung by, via the longcut (long cut is the grownup word for taking the emergency exit stairs from floor 3 to floor 7 then realizing that they are emergency stairs then having to go all the way back down to the first floor before some nice person finally lets you back into the hospital so that you can take the elevator), the 7^th floor pediatric ward.  It is amazing how different UCSF and Kaiser Santa Clara really are.  Kaiser is a very suburbia hospital.  There is a lot of room, and everything moves at a more gentle pace.  UCSF is very much an SF hospital.  It seems very chaotic, it is very cramped, and the people you see are much more unique.  There was a seemingly lost crazy lady hovering outside of our room for a while and then ended up kind of following us outside.  She never said a word, but I am pretty sure (after some deep and meaningful introspective thought (i.e. drinking two Stellas in my new father’s day beer mugs that had been chilled in the freezer…yum)) she was a government agent who had been nearly killed and was suffering from amnesia (that is a good idea for a movie, someone should look into that).

We also learned, after I randomly commented that I had seen (what seemed to me to be) a large number of correctional officers, that at least one to two residents of Chez San Quinten come up to UCSF every day for medical treatment.  Sometimes the Constitution is dumb.

All in all the day was pretty fun.  Cole has embraced my challenge that he get up to 50 lbs by Tuesday.  So he had doughnuts for breakfast, quesadilla for lunch, frozen pizza dipped in ranch for dinner, and 2 bowls of Cinnamon Toast Crunch (with magic fat powder added) for the unnamed meal at the end of the night that is really an attempt by kids to avoid having to go to bed (we should form a committee to name this meal).

Last night Cole facetimed (for those of you who are not as cool as Cole…Face Time is an app on the ipod and iphone that allows the user to video chat over WiFi) Uncle Chris and they planned their upcoming D&D campaign.  I know I am biased because I love D&D, but I can’t tell you how awesome it is to see how excited he gets over this game. 

We are looking forward to Chirs’ team’s impending California invasion, and Cole is crazy excited.  As we wait, please raise your glasses and toast Cole professional golfer.

6-22-11

For some reason it keeps getting harder to write.  It is not really that I am tired, rather I think that it is more that with each passing day I get more and more used to the life that we now live.  As a result, medical stuff does not seem like it is really worthy of writing about.  I know that all of my adoring fans do not live with it everyday like we do, so I guess I will push on……woe is me….(I have never really tried to sound like a victim before.  How did I do?)

I don’t remember the last update that I gave, and as I make it a point not to go back and read previous posts, I will just have to pick a point and start from there.  If you feel lost, drop me a line and I can fill in the blanks.

I think in the interest of being the slightly off center person that I am, I am going to do this update backward.  I will start with the present and work my way back to the starting point. 

Cole is gearing up for his stay at UCSF.  For those of you not in the know, the down and dirty procedure for the UCSF stay is as follows: 1)super high (much higher than any of the other rounds) dose of Chemo for 3-4 days; 2) 1-2 days of rest; 3)Stem Cell Transfusion (they are his own stem cells and will, apparently, smell very much like creamed corn.  Modern medicine is amazing); 4) recovery.

We are also part of a study.  The study has two test groups.  One group does one cycle of steps 1-4 above.  The other group does two cycles.  From a purely selfish standpoint, I am hoping for the one cycle so that he can get out of the hospital as quickly as possible. 

Cole is really excited about one aspect of his UCSF stay.  Uncle Chris has designed (patent pending I am sure) a D&D campaign for Cole and the cousins to play.  Excited is not really the right word.  Giddy is probably more accurate.

Elisa, Cole and I are going to UCSF tomorrow (Thursday) to sign all the consent forms and do whatever other medical stuff needs to be done for Cole to get ready for the (as of right now) next Tuesday admission date.

These last two weeks are been filled with a bunch of doctor/clinic visits and tests.  They were all supposed to be jammed into the previous week, but one test (bone marrow) had to be pushed a week so that his platelets could get to the right level.  Also I totally dropped the ball and forgot to give him the potassium drops that are needed to protect some organs from the nuclear injection that he gets for the MIBG.  Despite those minor setbacks and the two transfusions (one platelets and one red blood cells), Cole finished all this tests this afternoon.  They even threw in a bonus 3-D test.  It appears that he has all 3 Dimensions after all.  Good for him.

Other than that, we have been enjoying the wonderfully warm weather in San Mateo.  Elisa is out of school.  Although the week right after school got out (cuz she is a glutton for punishment…why else would she have married me), she attended a week long class that was designed to increase her technological savvyness in the class room.  She is now the queen of Google Docs. 

Logan is down to 2 days at day care/preschool.  Both boys have decided that their new passion is now woodworking.  Logan refers to it as “fixing the wood.”  For those of you who aren’t familiar with that term, “fixing the wood means to take a piece of wood and bang it repeatedly with a hammer then bang it repeatedly with every other tool irregardelssly of said tool’s actual purpose.

Cole, too, has been working with wood.  Fortunately (and yet way more unfortunately because he has already surpassed my abilities) he actually tries to build things.  He has currently built a water plane and is working on a lemonade stand.  He is such a sophisticated carpenter that he has even hit his finger with a hammer (real, not plastic cuz dats how we roll).

Uncle Chris’ team comes out at the beginning of July, and we are all eagerly awaiting their arrival.  Chris was able to secure (though means that are better left unsaid partially because this is a family blog and partially to avoid incriminating evidence reaching the D.A.’s ears) from the UofA A.D. a basketball signed by the Elite 8 UofA basketball team which includes very soon to be drafted Derrick Williams (not too late to change your mind and stay another year.)

So while we wait for UCSF to happen, I ask that you raise your glasses and toast Cole, NBA All-Star.

6-8-11

I have developed this kind of strange fear.  While I am always concerned about Cole’s cancer, I find that I am not really afraid of it right now.  Maybe that is because he is doing so well, I don’t know.  What I am terrified of is that Cole will get through all of this cancer stuff and as soon as the Dr says that he is cured, he will get hit by a bus, or an airplane will fall on him, or he will be abducted by aliens.  Now as a parent you always have that fear that something might happen to your kids, but it seems that my sense of fear has been heightened lately.  Very strange.

This evening we went to Cole’s open house for his kindergarten class.  The teacher was very happy to see him.  Cole was a little shy at first, but soon opened up and was chatting away with her.  I was glad to see that the other kids remembered him by sight alone, and all seemed very genuinely happy to see him.

Part of the open house event was that they turned the multi purpose room into an art gallery to display all of the art the kids had been doing.  Now this was not just Cole’s class, it was for the whole school.  The organizers did an amazing job.  At one point we were in the gallery and Cole was standing three of his friends.  The moms were taking pictures (as moms do, especially at the end of the school year), and for about 30 seconds we were not the family dealing with cancer, Cole did not have cancer.  He was just a kid standing with his friends.  So far I have been pretty good about holding it together during this difficult time, but those 30 seconds almost crushed me.  You see the problem was that those 30 seconds ended, and Cole does have cancer, and we have to deal with it every second of every day. 

That being said, we will keep fighting the good fight, and while we do please raise your glass and toast Cole, the next Food Network Star. 

6-6-11

So I have been a big bucket of nerves and have been suffering from white screenitis(MS Word spell check says this word is misspelled, but I ask you Mr. Computer how would you spell it?  No suggestions, then leave me alone), which is why I have not written since my last post right after Cole’s surgery.  Also I assumed that since it is NBA Finals time, everyone would be much more interested in that than what I have to say.  Apparently I was wrong.  Sorry Bron Bron.

So by way of summary, Cole had his surgery on the 24^th of May in the year of our lord 2011.  They were able to get the main tumor and just had to leave a “film” (as Dr. Sullivan describes it) of cancer cells on some important structures (like the aorta).  She did tag these structures with tiny titanium tags so that the radiation techs will have some billboards to direct them to the cancer cells.  In order to defray the costs of all this high faluten’ medicinal hocus pocus, we did obtain some corporate sponsorship.  His titanium tags  have appropriate little advertisements extolling the virtues of products such as Coke, Nike, and Depends.

So the surgery was on a Tuesday, and immediately after the surgery Dr. Sullivan said that he will probably be in the hospital for a week.  We started off in the PICU (Pediatric Intensive Care Unit? Papays In California Usually? Protein Is Creepy and Useful?).  PICU is kind of cool because you have absolutely no privacy and no bathroom.  Well that is not entirely true.  There is a super secret unknown to the general public and only super secret spies like me know about bathroom (crap, I was not supposed to talk about the secret bathroom.  They are going to come after me now.  If anything happens to me please go find the safety deposit box.  It is the one in San Francisco.  The password is “Fluffy Bunny Feet.”  When you get there, open the contents and let the world know.  Don’t let this secret die with me…..please help us Obi Wan, you are our only hope).

So he was then transferred to the normal Pediatric Unit (or PU for short and because it houses a bunch of kids, most of whom are stinky because that is how kids are).  A week they told us.  Uh, I don’t think so.  Cole decided that on Saturday he had had enough, and snuck out of the hospital disguised as a kid who recovered amazing quickly from surgery.

So just to rub it in Dr. Sullivan’s face (a week, what a joke), Cole took an excursion to Malibu Grand Prix on Sunday (for those of you keeping scorecards at home, that is 5 days from the surgery).  He played mini golf, rode the bumper boats, and he and Logan skillfully turned my $5.00 at the ticket giving games into 2 yo-yos and 3 plastic rings.  We then decided to push our luck and go out to dinner that night.  We went to Bennihana’s.  Unfortunately Logan forgot to pack any pain medication for Cole, so he did not really get to enjoy it.  We will definitely have to go back in the not too distant future so that he can have more fun.

So after enjoying the long weekend, Cole and I (armed with a suitcase full of D&D stuff) went back to the hospital to check him in so that he could knock out his last round of Chemo.  Chemo started on Tuesday and he was discharged on Friday.  The doctors told us that the effects, especially the nausea, of Chemo are cumulative which means that after this round he was going to feel as crappy as all the previous rounds plus this one together.  Again Cole turned up his nose at the conventions of modern medicine, and instead decided to swing by San Jose on Friday and eat some homemade pizza and some cake.  He wrestled with his cousins and assaulted his grandpa.  The kid is a rock star.

So this week we have my parents visiting from tropical Arizona, which as we speak is burning again (Arizona catching on fire is a more accurate indicator of summer being here than any calendar or weatherman could ever be).  Papa Baker has been tasked with building a living wall, a built-in book case, and a treehouse/fort.  Cole is the assistant.

So we got our dates set for the big Disney World trip (thanks to Make-A-Wish).  We are going to be going out the week of Thanksgiving (actually flying out on Thanksgiving….the plane better have a good turkey dinner for us).  We will most likely be staying at a place called Give Kids the World.  The place looks insanely awesome when viewed through the eyes of a kid.  If you get a chance, check out their website. 

So in the meantime please raise your glasses and toast Cole, playground equipment engineer.