This blog started out as a chronicle of my son's fight with neuroblastoma cancer. Fortunately he has been doing so well that there has been less and less to chronicle regarding this disease. I have decided to expand this blog such that it will cover all of my family. Don't worry though, the information passed will still be filtered by my rather large, impressive, and completely insane brain. So grab some pancakes, and buckle up.

Tuesday, March 14, 2017

GI

To sum up:

Just sit right back
And you'll hear a tale
A tale of a fateful kid
That started from this San Mateo,
Inside this tiny house.

The kid was a bad ass dude,
The Dad brave and sure.
Five family members fight this fight
For six long years,
For six long years.

His health started getting rough
The tiny boy was diagnosed
If not for the support of family and friends
The family would be lost.
The family would be lost.

(In case you didn't already, go back and re read the above to the tune of Gilligan's Island)

In case that did not make sense to anyone let me splain to ju a leetle better.  We have been treatment free for some number of months that is more than 1 and less than 100000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000 (Ask Elisa the correct number as I don't do "exact" or "right" or "accurate" or "true" or """".  During that glorious indeterminate number of months we loaded up our schedules with baseball (all 3 boys), basketball (2 boys), soccer (1 boy), dance (1 boy), a new teaching job for me, and coaching two basketball teams (me).  Now is the time when you send flowers, Starbucks Gift Cards, a nice Pinot Grigio, or a bottle of Aboslut Citron to my bad ass wife as she has borne the brunt of the ensuing chaos.

Howevers, a new spot has emerged and we are back in the treatment world.  We were given 3 offers.  We rejected, as Office Space taught me, the first offer out of hand.  For the other two I will break them down into relevant portions for your convenience (no thanks needed.  If you want to the know the specifics and science behind them...too bad).  The first is a pill that is taken once per day and has not shown any side effects.  Of course it also is very early in the experimental testing phase and has not shown any actual curative results yet.  The second is the super trendy ch14.18ILT which is an immunotherapy with a chemo kicker.  This has shown significant positive results and is FDA approved which means, I think, that we can get it from the Taco Bell drive-thru now (might be mistaken on the last part).  Down side is that it means 1 out of every 3 weeks he is in the hospital inpatient, there is guaranteed serious nerve pain (which I never understood that term.  Isn't all pain nerve pain?  I never took anatomy but my basic Arizona High School education leads me to believe that pain is what the nerves do), possible hair loss, general shitty feeling, and possible inability to go to school during non-hospital weeks.

What to choose? What to choose?  First of all I would like James Earl Jones to read my blog into an audio book.  That is what I choose.  Second, after deep consideration, a number of d20 rolls, mediation (or was it meditation?), and the obligatory throwing of the bones, we came to the conclusion that, like backyard chickens, if some is good then more must be better.  So we are doing the pill until summer then, assuming no change or negative results, we will jump on the bandwagon and start eating the chalupa14.18.

Because of all this, I have decided (for those of you who didn't know this won't make sense, but not in the way that most of what I say doesn't make sense) to resign my professorship effective Friday.  From that moment forward I will no longer be tasked with the shaping of tomorrow's leaders.  Probably for the best.

Now I know that most of you are asking yourselves, your pets, your sig oths what you can do to help.  While all the normal stuff helps (prayers, thoughts, new Tesla for me to drive him to the doctor, etc.) here is where you can really help me the most.  I've got Cole.  We know this business and are, unfortunately that we know this, very good at this game.  D&D is being crafted, games assembled, and pringles purchased.  If you want to help, send Elisa some flowers.  Send Logan and Ollie some toys.  Go play with them.  Make them feel like they are not second fiddle to this whole experience.  They will be off this summer and will have to endure, again, a house that is in the business of hospitals and cancer and all that stupid shit.  We need to make sure they enjoy their summer.  Take them hiking.  Take them to the park.  Pick them up for a play date.  Fly them to AZ to attend basketball camp.  Build legos with them.  Dance with them.  Help them keep and define their childhood as their own.  That is how you can help.

So today I ask you to raise your glasses and toast my family, because they deserve it.

Sunday, February 19, 2017

i am too pissed about this situation to give a clever title or to even capitalize.

So tonight's blog is brought to you by Paula and the black gentleman named Johnny W that she introduced me to on my birthday.

The following conversation happened almost exactly as I am recounting.  I have only changed the names, accents and facts in order to protect the slightly more innocent than me.

(As an aside I think that I hate the idea of indenting paragraphs.  If I skip a space I really don't think that I also need to indent to let you know that we are on a new paragraph.  It seems kind of condescending. But I digress.  Here is the promised conversation)))))))(just cuz))))))

Setting: a living room in a non-descript suburban household on a plot that contains the legally allowable number of chickens and not one more.

Characters: Role-a 12 year old boy human.  Rad-a 40 year old bad ass dad type dude with magic powers and an Alar like Ramson Steel.

Role: Rad, why come you don't blog no mo?
Rad: Verily I say to thee, I haveth beenth busyth myth sonth
Role: say what?
Rad: Ah rekon ah gots ta talk dffrnt
Role: not helping
Rad: Go to bed

Now that we have been entertained and confused appropriately let's commence with the business that is the business at hand.

As previously reported Cole's last set of scans showed a new lesion (or as I have just decided to call it, legion).  This means...........................................................................................................................................................................................................................................................................................................................................we are back in treatment.  Yea for us!!!! Of course by yea I mean yeah.  And by yeah I mean stupid fu@#INg cancer.  And by that I mean....well I think that is self explanatory (aside: which of my insane grammer things is more annoying the parenthetical fetish or the .........?  The phones are open now.  Vote early and often.  Oh, and another stupid grammar redundancy that I have just decided to start hating.  I am, of course, talking about capitalizing to start a new sentence.  If I am punctuating to show that a sentence has ended, shouldn't I assume then that you are smart enough to understand that right after that punctuation a new sentence has begun?)()()(())

If you are lost, let me recap.  I am crazy.  I am slightly drunk.  I hate cancer.  Cole is going to restart treatment.

So the recommended option is something called ch.14.18 (for the record the periods herein are not of my own making) which is an immunotherapy which, as I choose to understand it, turns Cole into a mouse...or was made from a mouse, or a mouse was sacrificed in a ritualistic manner in order to create the therapy.  It will mean that we will find ourselves back as regular residents of the wonderful 3rd floor.  If you are part of the calvary, stand by.  You will be getting a call soon.

The other option is to go back to eating sweaty socks and not eating meat fat, milk, or things that are hot (see previous posts about fenretinide).

So that sucks.

Oh well, we will handle our business as we always have.  While we do, please raise your glasses and toast Cole, tenacious defender for his Abbott Falcons.

Friday, February 10, 2017

2/10/17 I hate birthdays

I have never been a big fan of birthdays.  I, in fact, only have one happy birthday memory.  Now it is important to note that lack of happy does not necessarily mean unhappy, it just means a lack of affirmatively happy memories.  Now my one happy memory of my birthday was only happy due to a piano player, The Undertaker, and Glenn the bartender.  Other than that I have a bunch of neutral memories, one sad memory and then starting 6 years ago, shitty memories.  But I digress....no I don't....tomorrow is the day formerly known as my birthday, but that I have rechristened Chemo Christmas and I find that we are right back where we have been, but thought we weren't.

That's right sports fans, we are going back into the world of treatment.  For the last 9 months I have been working diligently to make myself forget all those treatments, days/nights/weeks in the hospital, Kaiser, UCSF, bone marrow, surgeries, hair loss, anti-nausea meds, fear, fear, fear, and fear.  I had almost even convinced myself that I did not remember what it felt like to get kicked in the parent nuts.

To give a quick summary since I have not written in a while, last summer Cole had the big surgery at UCSF and then had to go on a crazy low fat diet due to issues from the surgery.  But (and this shows what a bananannas life we live in and how our perspective of "normal" is all messed up) other than that, we have not had any C-word stuff for quite a while.  He has been in school, making friends, playing basketball, and generally loving life.  Well now that is about to change.

This week we had scans.  The CT came back clean.  The MIBG came back with a new spot in the lower back.  This i,s to quote the, apparently, visionaries of the future, a most heinous turn of events.  It means that our plan of do nothing and have a great life is not to be.  Next week I will meet with the team and Kaiser and figure out what our treatment options are.

Let me just say that Cancer sucks.  I don't mean it sucks like Cauliflower sucks.  I don't mean that it sucks like the Nets suck.  I don't mean that it sucks like ties suck.  I don't even mean that it sucks like 45 sucks.  I mean that it sucks more than anything else ever.  In fact if you take all the sucky things that have ever existed and add them all up, you still will not have the suckness of Cancer.

When I told Cole about the new scans, he, of course, took it in stride.  I often wish I had half his strength.

I will try to update after we decide what to do, but my ability to write is based in large part in the amount and type of alcohol I have at my disposal so if you are a fan, send booze.  Also make yourself a drink and toast Cole, the boy who lived.

Thursday, September 1, 2016

9/1 Foundation #1: Okizu

Okizu is a non-profit organization that runs a kick-ass summer camp for pediatric cancer patients, their siblings, and their families.  We have been to their family summer camp and both Cole and Logan have been to sleep away camp for the last two years.  The staff is amazing, and they will bend over backwards to help to make sure your kids get the best camping experience possible.

This is a great outfit because they are able to perform a small bit of magic for these kids.  They bring a bunch of kids together, all of whom share this horrible set of experiences.  The magic is that they have set up the camp in such a way that despite the fact that the kids are all there because they (or their siblings have cancer, it is not the focus of camp.  If you were to go and watch for a day, you would just think that it was a regular camp for regular kids.  For those of you who don’t have to go through this on a daily basis, regular is good.  Regular is the ideal. 


Check out their website at www.okizu.org.  Right now they have a triple matching campaign going so if you donate $100, they get $300.  If you give to Okizu, I will, for purposes of my internet embarrassment, honor the triple amount.

September is Pediatric Cancer Awareness Month

Dear Facebook and Internet,

Please share this with the rest of your friends and ask them to share with theirs:

This month is Pediatric Cancer Awareness Month. Pediatric Cancer kills more kids than any other disease; however it only receives about 4% of the total funds allocated towards cancer research. For that reason, outside fundraising is of paramount importance. As you all know, my oldest boy has been fighting a form of cancer called neuroblastoma for over 5 years. And since we are still fighting, as opposed to the awful alternative, I consider us lucky. Others have not been so lucky.

There are a great many organizations and foundations out there that raise money for research, family assistance, and the like. I ask that this month you please, please, please, consider donating some money to one of them. In order to help you, I will do two things this month. First, each day this month I will highlight on Facebook and Twitter one foundation or organization. Second, if you prove to me that you have donated this month, or if you send money to my paypal account, I will thank you by embarrassing myself on the internet. As the total dollar amount increases, the amount of embarrassment of the thing that I will do on the internet will increase. At the end of the month, I will take all the money received via paypal and make one donation to an organization that our family most likes.

The email address that you can send paypal money to is aric44@gmail.com. If you are concerned that this is some sort of a scam you can 1)ask my wife, Elisa (who is nearly incapable of lying) or 2) check out my blog to learn about our family history in dealing with this. The blog address is www.http://aboutcole.blogspot.com.

Here is the current donation/embarrassment tier: If we get lucky and get a bunch of donations, I might add some cool, funny stuff. *Note that if you prove to me that you have donated $1,000 in one shot, I will let you pick my embarrassment (within legal and loose moral bounds).
$1: Photo of me smiling
$10: Photo of me with excited smile
$100: Video of me dancing
$500: Video of me dancing without my shirt
$600: Video of me signing
$700: Video of me acting like a My Little Pony Character
$1000: Video of me swimming in the freezing Bay water
$5000: Video of me swimming in the freezing Bay water with as few clothes as possible without the video being porn
$10,000: Internet’s choice
$20,000: Me playing 1 on 1 with Steph Curry (assuming I can convince him), and made to look like a fool as he cross me over, breaks my ankles, and drains a three on me.

Sunday, June 19, 2016

Back At It

When it all said and done there are essentially two types of events.  There is the Curly Bill event, and the Johnny Ringo event.

For the past amount of time that I don't really know but that is a significant enough amount of time for the purposes of what we are taking about (see my better .5 for exact details) the big time events have all been Curly Bill.  I honestly can't remember the last Ringo event that we had.

With Curly Bill it all happens so fast that you don't really have time to think or worry about it.  You just deal with it, walk into the river and shoot.  But with Ringo, you know he is out there.  You know what to expect from him.  You know where.  You know when.  So you sit on a couch 2 days prior and think about everything Ringo is.  You worry that you will get swallowed up by that big empty hole that can never be filled.  You worry that you are not good enough to beat him and you know that despite cinematic evidence to the contrary there is no huckleberry.  There is just you and yours facing Ringo.

Well to that I say, fine Ringo take my sleep tonight and tomorrow night.  Take my concentration at work tomorrow.  Take the stress that those around me experience when I bite their heads off.  Take it all. You want one of my kidneys?  One of my lungs?  Take it all.  But know this you heartless son of a bitch.  You will lose.

In just over 30 hours it will happen.  They will stop talking about H hour, D Day being on June 6.  Now all will know that June 21 is the day that we invaded.  The new battle of Normandy will not have been fought on the shores of France, but rather in the body of a bad ass little boy.  No bombs.  No guns.  Just wrong on one side, and right (powered by science and a shit ton of collective and cumulative education) on the other.  June 21 will be the day that we stood on the bridge and said, "You shall not pass.  Go back to the shadow.  You will not pass."

In just 30 hours you will likely be getting ready to start your day.  Maybe having a cup of coffee, tea, or juice.  Well when you do, please raise your glass and toast Cole, The Dude.

Tuesday, February 9, 2016

Reminiscing

Thursday marks 5 years since the first chemo treatment for Cole.  Not surprisingly, this week I have been thinking a lot about when Cole was first diagnosed.  It's kind of funny the things that I remember so clearly after all this time an after all these treatments and after all of everything.  
I remember the first room at Kaiser (room 4), and how it and a little antechamber connected to it.  
I remember the magic hidden toilet in the PICU.  
I remember Nurse Level 2.  
I remember Elisa and Julia forcing me to leave the hospital to go take a nap at the hotel.  
I remember standing outside Room 4 and watching my sister walk down the hallway, thinking at the time that it seemed such a far walk.  
I remember the anticlimactic conversation with Cole wherein I told him that he had Cancer.  
I remember (and this is a strange one) sitting in that little room listening to Dr. Taggart tell me the diagnosis and wondering if, due to her ears, she was a half-elf.  
I remember giving Cole a bath and thinking that he looked like he had been in a concentration camp.
I remember a thousand million other small shitty details that I wish I could unremember.
I remember fentretonide.
I remember the irony of oral zofran.
I remember mint ice cream.
I remember visits to the ER.
I remember him falling at the park prior to diagnosis.
I remember yelling at him to walk right, not knowing the bone marrow in his hips was essentially melting.
I remember finding a time machine being carelessly left unattended.
I remember taking the time machine to the future and finding out that they had cured cancer.
I remember taking that knowledge back to February 2011 and nipping this shit in the bud.