9-27-12

Unfortunately I flew too high and my wings melted.  I then plummeted down, and as I started to right the ship, so to speak, the waves hit me.  

On Sunday Cole was feeling crappy.  We checked his temperature and it was 312.48 Kelvin.  Called Kasier and off to the ER we went.  On Monday, the fever persisted so off to the clinic we (we herein for this sentence refers to gma and gpa) went.  On Tuesday Dr. Taggart called and said that the cultures drawn on Sunday had grown into something (presumably Canadians) and that we had to go get admitted. So............................................................................................................................................................................................................................... I got to leave my new job early, again, and take Cole to the hospital, again, and we met the president again.  We were going to stay at the Hotel Abbot, but Kaiser knew of a much better place, so we stayed with them.  Now I feel that I must stray from this otherwise completely coherent and succinct summary of what's what and wander into a rant.  Over the last 18ish months I have spent a great deal (great deal is the grown up word for way more time that you should ever have to spend in a hospital with your kid) of time at Kaiser Santa Clara hospital, 3rd Floor, and have always been treated like a VIP (VIP is the grown up word for Vociferous Idiotic Parent).  You can understand my shock and awe then when I tried to go get some water from the room where the water and fridge are only to find that they put a lock, and an electronic one at that, on the door.  Not only was I locked out, but they refused to give me the code.  I tried to explain to them that the US Government (the sweetest smelling government in the world) saw fit to bestow upon me a secret clearance but to no avail (but to no avail is kind of a strange expression. You always use it in the negative.  You never say "to avail."  Kind of like repeat.).

Despite that, we had a nice stay.  Since the Monday cultures did not grow any friends to the north, Cole was free to go.  As they were discharging him they mentioned something about how the growing of the cultures was not due to bacteria in Cole's body, but rather contamination from the tech's glove.  Really.  The strain on  my nerves, as well as my new job did not need that.

As you can tell, I had a bigge week, but we seem to have made it through.  I will try to write again sometime soon, but in the meantime please raise your glasses to Cole, crane operator.  

So anyway, like I was saying I haven't written in a while (4 months to be exact) and I have almost forgotten how to write such that I am sure that I will make many grammatical mistakes and some of them might even be on accident or maybe I just might throw caution to the wind and completely avoid the use of a period irregardlessly of the amount of words, ideas, thoughts, rants, plea bargains, etc that I decide to use in my seemingly senseless and random diatribe.  Ok, maybe not.

So, a ton has happened in the last few months.  I will try to be brief in my summary.  First, and foremost all the people that reside in the San Miguel Baker household are alive.  The dog is alive.  The chickens are alive.   Unfortunately I can not say the same thing for the hermit crab or the rolly polly (although in our defense, I don't think the rolly polly was ever alive while in captivity).

Logan is doing well.  He is developing a strong, and some might say destructive, addiction to Star Wars.  He has only seen IV and VI (IV and VI is the "My culture has been dead for a long time mostly because we never figured out the 0 in math" way of saying A New Hope and Return of the Jedi (A New Hope is the hard core Star Warsy (tried to work Trekkie into Star Wars but it did not really work out) way to say what most people just refer to Star Wars)))))))))))))))))))))))))(I lost track of how many I had to close so in an abundance of caution I made sure to secure my parentheticals.  The last thing you want dangling where all the world (including the Pope and your 1st grade teacher) is a parenthesis.  )()()()()()()()()()(((((((()))))))))))).  He is a senior in College now and has almost mastered reading.

Oliver is built like a baby Barkley (Charles, not Matt although I would not say no to a scholarship to USC and a top 5 draft pick).  He is about to start crawling any day now.  He loves his new babysitter, Heather.  It was strange to take him to someone other than Anna.  He is a big bucket of giggles and poop.

Cole has been doing well. (let's get the medical crap out of the way).  He went through the MIBG therapy.  It was a crazy experience and I don't wish it on anyone.  At least; however, it did not seem to do any good whatsover.  So that is good.  Now we are on a new therapy this is logistically not so bad (one week of appointments every day but no overnight stays), and of the three medications that make up this protocol, he has taken two of them before (with positive results).  He has completed one round of this, and begins his second round soon.  After round 2, we will do a bunch of imaging.  Have to remember that it is a marathon, not a sprint.  Other than that, Cole has started 2nd grade, and really enjoys it.  He is playing soccer (had his first game last week.  I was the ref.  There were some controversial calls that some of the parents took exception to so I had to go and tell them what was up.  After the game I went home and made a big stack of pancakes and felt much better).

I have to go to sleep.  I have a bigee day tomorrow.

I have decided that I want to do a fundraiser (for some good charity, just don't know which one).  The fundraiser has to include Michelle Obama and Patrick Rothfuss.  Anybody have any ideas?

5-16-12

He is only 7.  Let me tell you two things that suck.

The first is that Cole asked a pointed question whose answer could only be fully given to someone with knowledge of chaca chaca boom boom (chaca chaca boom boom is the grown up word for making the beast with two backs).  Normally I would just use my powers of distraction and avoidance; however, I caught my self for one of those moments.  You know those moments that I am talking about.  It is that moment that takes, in reality, a fraction of a second but in your brain takes hours.  If it were a movie, you would have a conversation with your two selves in order to make the needed decision.  You see while I know that I will have to have the conversation with him that involves where to stick it, that conversation is not supposed to happen until after he and his friends have had the chance to look at an entirely inappropriate amount of porn.  What gave me pause however, was the fact that I cannot answer one simple question.  What if I don’t get a chance to have that conversation at all?  What if we lose?  WTF?

The second thing that sucks is this.  If you know that someone is going to hit you in the stomach with a 2X4, you can kind of prepare for it.  You can do your best to make sure that you take the hit in such a way that you protect, as much as possible, your vital organs.  Every time that my phone rings and I see that it is Kaiser, I have that moment before I answer the phone to get myself ready to take the hit.  I am used to it, and have gotten to the point where they can’t hurt me anymore.  But now imagine that out of nowhere someone randomly takes a shot at your stomach with a 2X4.  That would suck, huh?  I, randomly, get hit by that 2X4.  It might be something that I see (the outline of his tubes), something that happens (His legs start to hurt)……, or something that is said (like when I was talking to Oliver and I said that Cole is pretty cool and that when I grow up I want to be just like him.  To which Cole responded, “I don’t think you want to be like me.  For one, I have cancer.).  He is only 7.    

Well, please raise your glasses and toast Cole, the next Jim Duggan. 

Today

Today is kind of a random thought day, no real updates.  I should have something newsworthy tomorrow.

Not sure which is the more appropriate (although ridiculous) reference, so I will throw both down.

Remember when they guys got back from Antarctica and Sheldon ran back to Texas?  Well the universe keeps treating me like Leonard.  I can’t catch a break.

Or…

You know what I am afraid of? Quicksand.  You know you are going along and then something happens, and then another thing happens, and another, and another.  An no matter what you do to try and get out, it seems like whatever you do just causes you to sink further in.

You want to know something scary, I can tell the difference between 10 year old and 12 year old GlenMorange Scotch (even if I can’t spell it, or afford either).

I feel like I am supposed to love the Olympics, and I truly used to.  However, they have not even started yet and I already am tired of them.

It is funny the effect time and distance have on a relationship with another person.  What is even more interesting is how time and distance from a third party can affect the relationship of the principals.

I wish that my education had a greater amount of arts.

America’s Got Talent scares me.  Not because of the sheer stupidity of it, or that Howard Stern and Howie Mandel have control over other people’s lives.  What really scares me is the fact that they sell out the theater. 

I wish I owned a tux.  I wish I needed to.

I wish Cole did not have Cancer.  All the rest is just bullshit.

5o-5o-12o

First, happy Cinco De Mayo.  Go have some French Fries with hot sauce.

So we have a bunch of stuff to catch up on so I am going to try and limit my random rantings except to say that I have put in a call to Tony and hugs can be expected.  Don’t push me.  Yes, that much.

So when we last spoke I told you about how we were going to have to do the MIBG therapy and that we were meeting with UCSF.  Well we had the meeting on Wednesday, and the universe decided that was a good day to show up and say hi.  Please allow me to elaborate.

** ok so I know I said no rants, and I almost meant it.  I wonder if people who smoke crack have a moment of clarity right before puffing and think to themselves, “I know this sucks and it is destroying my soul,” and then they suck that shit down.  I have a TV show with which I have a similar relationship.  Poor Dev**

We had appointments for Oliver and Logan for check ups.  Cole had a therapy.  Oliver received his first shots.  Logan has either foot and mouth or mad cow disease.  Cole started feeling crappy at the meeting and the whole house, with me excepted for the moment at least, has descended into sickness.  Cole, of course, spiked a fever and we ended up in the ER until midnight (an hour of which was us sitting in the pharmacy waiting on medications that we ended up not taking anyway).  Good day.  At least I was paid for my time, thanks to the generous people at WEMED.

At the meeting, we learned more about the MIBG therapy and I will tell you that it truly sucks.  We, as the caregivers, can only spend about 30 minutes per day at Cole’s bedside due to his becoming highly radioactive.  There will be a small mirror that will allow us to see him, and for him to see us.  Fortunately Cole is all about the adventure so the idea of a mirror is awesome to him.  For me it is another sucky thing to have to put my son through.  Fortunately I have a great support system, and the AZ Bakers are being mobilized and spreadsheeted.

**Another randomization.  Watching the NBA playoffs, I can’t help but find that the two teams that I want to see win are the Lakers and the Celtics.  This bothers me because I kind of hate these two teams.  The Lakers have one of the best players ever, but he is a total ass.  They have a lazy punk for a center who, when he shows up, is unstoppable, and they have a truly crazy person.  The Celtics have one of the best assist men that I have ever seen play.  They have one of the best pure shooters that I have ever seen play.  But they have Kevin Garnett.  I want so bad to hate both of these teams, and I want to root for the Grizzles or the Thunder, but I can’t.**

It looks like we are a go for UCSF on or about June 14^th.  He will probably check in to his luxury suite on the 13^th, and then on the 14^th, he will obtain his super powers.  If you want to know more about  it, then you will just have to read the comic (which will be on sale soon).

Before I go, I want to make two announcements.  First off, JULIA IS ENGAGED TO BE MARRIED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! TO A BOY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Second, Julia’s...nay, my new soon to be brother in law is already stepping up to the plate.  He is giving a free seminar(?) or class(?) (not sure the exact format) about internet security.  Now, please understand that I am not trying to make fun of what he does.  I just truly don’t understand it.  I know that he is something similar to Robert Redford from Sneakers (Don’t look, listen) and that if you mess with his new family, he will hack yo ass….er something.  No, really I don’t understand it.  It has something nerdy to do with computers, and believe it or not, I am the cool one in the family.

In all seriousness (no really I promise this time) check out the link for what he is doing.  If you  follow his instructions and make the donation to Cole through this blog and put in the magic password, you will be able to receive a piece of his expertise.  http://www.securityaegis.com/hacking-cancer-please-spread-the-word/

For now please raise your glasses and toast Cole, deadly from beyond the arc.

False Spring

False Spring.

I don’t usually put titles on my posts.  The reason for this is twofold.  First, titling requires a level of cleverity that I do not possess in sufficient amount.  B, I never know what I am going to write about until it comes out.  And since I don’t go back and re-read, it does not make sense to put in a title.  And 3, I like to see what Martin at San Bruno Patch (shameless pitch…check out Patch.com) comes up with (it makes me feel like a real author).

Today however, I am making an exception.  I was thinking about calling today’s post Ruin v Peservation but I think that only a couple of people (Matt, Patrick, maybe Jason) would understand what I am talking about, so I went with the safe route and decided to call this post, “False Spring.”

In the past I have discussed how hard it is to write this blog in the absence, or significant lessening, of emotional difficulties.  That is why I moved the purpose of this blog to the family as a whole, and especially the wonderful experiences that we are having with three crazy boys.  Well, I have recently been reminded exactly why I started this blog. 

Cole had his series of scans and the main area in his abdomen has not changed in size, which is a good thing.  This means that, while it is not shrinking, it is not growing.  That was the news that we were hoping for.  Don’t start dancing yet, though.  The MIBG scan showed an area in his leg with active disease.  OK, so that sucks.  But wait, there was a chance that it was not actually active disease in his leg, but instead, it was pee on his leg.  Stay with me.  This is not one of those random things that I write that may or may not be an inside joke to someone. 

So they did a further scan, MRI this time.  The MRI confirmed that in fact Cole does not, or at least that time did not, pee on his leg.  He has a new spot of active disease.  I thought we were done.  I had already planned on the tubes coming out, and having the summer to end all summers.  Alas, it is not to be.  We are jumping right back into therapy, starting next Monday. 

We start with an infusion therapy at the clinic for 5 days, starting on Monday.  Fortunately the therapy will be done outpatient at the clinic, and Cole will likely not miss any school.  After that, and sometime in June Cole will return to UCSF for a one week MIBG therapy.  This therapy is much more intense and when I know more about it, I just might tell you.  We meet with the UCSF people next week.  I can tell you that there is a mirror involved.

I thought we were done.  I thought we were done.  I thought we were done.  I thought we were done.  All work and no play makes Jack a dully boy.  I thought we were done.  I thought we were done.  I did not cut and paste.  I promise.  I thought we were done. 

What if we lose.  Fuck.

Let me tell you what keeps me sane.  Watching a network TV show that is a musical about the making of a musical which suddenly breaks into a Bollywood number.  And I have had only one glass of Scotch.

Oh well, I would say sorry for the rambling and strange post tonight, but I am not really sorry cuz that is how my brain is going right now.

Please pray, think of, meditate about, or whatever for Cole.  In the meantime please raise your glasses and toast Cole, optical engineer.

3-30-12

Just finished the Hunger Games trilogy.  First off, while I understand that these books were written for teens (lots of gory death but no sex….our priorities are wrong…..but that is for another blog), the books still were not all that good.  The premise was sound, although predictable (very imaginative evil setup that needs to be overthrown; a seemingly unwilling heroine thrust into the limelight by other powers; final decision that must be made which will determine the fate of the world).  I had two major problems, however.  The first is that there were a huge number of grammatical mistakes.  Now I don’t eat, shoot, or leave, nor do I eat shoots, or leave but a professionally printed book should not have these mistakes.  The other big problem I had was the ending.  They should have ended the book the second she shot the last arrow.  Don’t tell me what happens next.  Don’t tell me how they lead the rest of their lives.  Just take the shot, and end it.  That being said, the books are nice potato chip books (a tasty quick literary snack that does not really fill you up but holds you over until dinner).

Cole has all of his big imaging tests coming up soon, and I am starting to get that gut twisting feeling in my stomach.  It is not that I am overly scared that the images will show something bad, just that these are the big ones.  We are all done with treatment and these tests will tell us if we are going to be able to move forward in a semi-normal fashion with the rest of our lives, or if this nightmare is going to continue.  OK, fine, maybe I am scared.  So be it.  I just want them to be here.  Waiting (like Aqua-Man, who is the Scooter of the Justice League) sucks.

So anyway like I was saying.  We are right in the middle of our busy season over here at Casa California Baker (busy season is the grown up word for the period beginning 2/11(by b-day), 3/1(Oliver), 3/2(Elisa), 4/1(Cole), 4/8(Easter), 5/9(Logan)).  Full planning control of Cole’s birthday party has been given over to me (what were they thinking).  I have devised a Harry Potter themed party which will include Quiddich  tryouts (sweaty grass stained kids), potion class (I think most of the ingredients are legal to give to kids), defense against the dark arts (love hitting stuff), and wand making (nothing like a customized weapon).  Boy parties are awesome.  I think next year we will have an MMA tournament.

Cole has issued his birthday request list, and it is thus:

Wii Lego Harry Potter Years 5-7

Art stuff

Football

Lego Harry Potter Legos

2 fish

1 hermit crab

A make lemonade kit

Pool

Green Eggs and Ham (not sure if he wants the meal or the book)

Logan’s birthday will be a little bit more subdued, but he has also drafted his list:

Camera (like Cole's indestructable)

Bob the Builder things

Dollhouse

Art stuff

Fire engine game

Police game

Sports things

Play structure

Flowers

Gardening tools

ladybug

crab

pool

water toys

Legos (normal size, not baby size) - police, fire engine, star wars

On the Oliver front, he is doing well.  He stays awake longer and longer each day, and I am pretty sure that he has already smiled like 20 times.  I know what you are thinking right now…it is just gas…well I say to you…I also smile after expunging gas….so there…  He has already started torturing his mother a little bit, but I am sure that will stop soon…at least I hope so…well it hasn’t yet with the other boys…

Last thing before I go.  I just found out that there is a 5K (for those of the Sam Baker ilk who agree that the metric system is stupid, 5K can roughly be converted to fro here to piyonder) fundraiser walk for Make A Wish in June.  We, or some portion of our household, are going to sign up.  I strongly encourage everyone else to do the same, or at least donate to the cause.  After I get my team registered, I will let you know how you can donate.  But at anytime if you want to donate to Make-A-Wish, but don’t know how, send me the money via paypal with a note that it is for Make-A-Wish, and I will get it there.  For now; however, please raise your glasses and toast Elisa, super mom.