4-19-13

I wish I was a baller.  I wish I was a little bit taller.  I wish I had a rabbit in a hat and a 6 4 Impalla. 

There are too many people to thank for all that they have done for us over the last 2+ years, but I am going to throw a shout out to one young lady.  Last Sunday, a girl from our church decided that she wanted to throw Cole a birthday party.  It was a great success, and Cole really enjoyed himself.  Despite being shy at first, Logan even eventually warmed up and had a good time.  His favorite part was when he got to give Cole a whipped cream mustache.  Thank you Anna.  You did a great thing.

So here is what had happeneded.  When Dr. Sullivan poked a camera into Cole’s belly area, she found a golf ball sized mass and some damaged intestine.  As a result, she went in and pulled out the mass.  She also cut out the damaged intestine and reattached the ends (basically the same thing that I do with my sprinkler system every year).  Cole now has 27’ minus 40cm of intestine (for all of you red blooded Mericans who do not know how long a cm is, too bad), and no mass. 

The mass appears to be made up of mature cells.  Now while many (your humble bumble author notwithstanding) people aspire to achieve maturity, cancer cells do not.  In the world of cancer, mature = begnin = not spreading = pretty freakin awesome.  This opens up the possibility that the other cancer spots are also mature.

We are hoping that with this mass being gone, which they are pretty sure caused the damage to the intestines, the stomach pain will be gone as well.  Just think, mature cancer cells, no stomach pain…..I can live with that.  So can Cole.

Cole is recovering nicely.  He came home today and when I asked him what he wanted to eat (he had basically not eaten any real food since noon on Sunday), he said, “anything, as long as it is meat.”  That’s my boy.

4-15-13 (Buy your local tax person a big fat shot)

So let’s go back in time a little shall we?  When last we spoke, prior to the last time we spoke, but we are not really speaking, well I am speaking but since I am sitting all by myself in the surgery waiting room, it is a little bit strange, the olderish lady near me is giving me strange looks, she might be hitting on me, wait they just called her name, and her name is Mrs. Robinson, unbelievable, you can’t make this stuff up, well maybe you can, (note that while writing this “sentence”, MS Word did not underline any part of it green.  That means that I did not violate any grammery rules.  Either that or Word has given up on me as a lost cause.)

For those of you keeping score, last November we were deeply involved in a fight against that stupid slow growing myco-whatever bug that prevented Cole from drinking as much milk as he wanted.  Well just as we were beating that bug down, Cole caught another bug.  This one came from the gut and sent us back into the hospital for a couple of days.  After, of course, a few trips to the ER.

Coming out of this experience, UCSF decided to switch us off to a non-immuno suppressing treatment.  Now I have been a part of this fight for over two years now, and we have seen some crazy treatments (see BMT, MIBG therapy, etc.).  This new one seems, on its surface to be a pretty calm and benign treatment.  All Cole has to do is take an oral medicine three times per day for a week, then take two weeks off.  Then repeat till forever, I think.  As you should have been able to guess by now (if you were not able to guess, please see an adult, Jackson, or Cole for assistance), there is a twist…or two.  The medicine is not a pill, nor is it a liquid.  Nooooooooooooo, that would not be consistent with how UCSF gets down on the med front.

This medicine comes in a “powder” form.  I say “powder” because the consent forms refer to it as “powder.”  Now when I think of powder (notice the lack of “” to distinguish differences in meaning.  Don’t feel sad, some day you will start to understand how my world works.), I think of chocolate milk powder, Gatorade powder, or maybe lemonade powder.  ‘parently; however, “powder” is more like concrete “powder” or Metamucil “powder.”  In addition, the medicine smells like the apartment on 1^st from back in the day (think (insert very high pitch Asian female accent) Chriiis and Jiiim.  Think orange couch that would hold on to your basketball shorts even if you are performing commando operations, much to the chagrin of your future sister-in-law).  The final kicker of this medicine is that it cannot be mixed with anything that is high in fat (which means, again, no milk.  It also means that it cannot be mixed with bacon grease).  So three times a day I had to make some crazy concoction (thank Zeus that I was a trained master mixologist) involving sorbets, soda, and wood chips and then force Cole to scarf it down.  If you remember the scene in Harry Potter 6 when Harry had to force Dumbledore to take the potion in the cave, then you have a good image of Cole (sans beard) taking this medicine.

The only kind of cool thing that resulted from the last infection and the fact that we are on an oral medication study is that they took out the pic(k?) line.  This means that I don’t have to wrap the boy up in cellophane (Mr. Cellophane do you know my name Mr. Cellophane) to take a shower.  He has been swimming without having to worry about the stupid line being submerged.

After Cole got out of the hospital the last time, and even though we have started this new med, he has still been having stomach pains off and on.  They did another CT scan and found out that he has a medical mystery inside his gut.  So the wonderful Dr. Sullivan is, as I type, poking around in his belly to try and figure out what is going on.  I will update when I find out more information.  Until then please raise your glasses and toast Cole, RN (which he says is a better job because you get to care for the patient more than a doctor does).

4/14/13

Where to begin?  Where indeed?  What if I wrote an entire piece all in questions?  How would that make you feel?  Did you miss me?  I bet you did?  Did you know that if you put a question mark at the end of a non-question sentence it becomes a question?

OK, now that we are all warmed up, let us begin.  First off, it has been a while since my last post and much has happened, but I don’t really feel like going into all of it right now so I will just start with where we are tonight, and then maybe work backwards o’er the next few days.

Not sure who all I have talked to, and when that last was so here is an update on Cole.

Last Thursday we went in for a CT-A and ultrasound to try and figure out why he has been having the stomach pains.  They found three things.

1.  There are now multiple areas of the small intestine that are showing damage.  If you remember there was one area of damage last time he was admitted.  They think that this is more of the radiation memory thing.

2.  They saw a spot of something outside, near, but not touching, the intestines.  The first thought was that it was new disease.  After all of Kaiser (oncology, radiation oncology, and GI docs) consulted with all of UCSF, they now do not think that it is disease.  The reason for this thought is that there are no other indicators (labs are all completely clean) to support new disease.

The result of all of this is that they are going to do a scope from the top and bottom (referred to as the skewer my son with cameras procedure) to look inside the GI system.  In addition, Dr. Sullivan is going to do a laproscopic procedure to look at the outside of the area.  She is also going to do a biopsy of the spot that is new.

We just checked into Room 3206 of Chez Kaiser to get ready for these procedures (get ready is the medical term for pour drain-o down him to clean him out).  Assuming that all goes well, he should be getting out on Tues or Wed.  There is a chance that when Sullivan goes in, she will see that the damaged part of the bowel is too damaged to leave alone, and she will perform a Control-X/Control-V procedure.

I learned today that we have 27 feet of bowel (might be more, not sure if we were only talking about the small intestine) and we only actually need 40cm.

I will update everyone on Monday afternoon after we get the results and know more.  For now; however, please raise your glasses and toast Cole, Zombie Killer #1.

11/17/12

There are two things that I wonder about (cuz I done already figured the rest out).  First is who is that guy Wes?  I mean seriously.

The second is ?  These are things that make me say hmmm (if this were a video blog you would see me with ridiculously long prosthetic fingers)

So………………Ollie is fat and phat.  He is officially mobile, agile, and versatile.  His favorite game is the classic crawl for the most disgusting and/or dangerous thing in the house and try to get to it before mom and/or dad and/or the dog and/or our stoner neighbor (wait he might be the disgusting and/or dangerous thing……wait why is he in my house……) and/or the and/or guy and/or gets to him as he cackles.  Great fun.  Still waiting on tooth number one.  Still waiting on him being able to sleep through the night (although in all (or at least “all” as I see it) honesty I still am waiting on being able to sleep through the night myself). 

Logan was going to have surgery (we earned some frequent medical miles through Kaiser so we decided to have some work done on) on Monday but the surgeon had to reschedule him so we will not have a cranky (well at least not crankier than normal) 4 year old on Thanksgiving.  He goes in in January which is good.

Cole continues to row his boat down the turbulent waters that is the chronic (disease not the other one).  Some days up, and some down.  More up than down though.  We have switched one of the antibiotics for another.  The one that we discontinued had some potentially nasty side effects.  This new med does not have the side effects but it is especially cruel in another way.  Let me splain.  My kids and my wife do not actually have blood.  No, their veins contain 2% cow’s milk.  They drink it with every meal, they bathe in it, they sleep in milk beds, and I even saw them chanting to a glass of it once.  This new med of Cole’s does not absorb into the body if there is dairy in his sytem.  If he drinks milk, then he has to wait 6 hours before he can take the medicine.  Once he takes the medicine, he has to wait 2 hours before he can ingest his holy fluid.  Now he has to take this med twice per day, and it is an oral med so he has to be awake.  All you math majors (drum majors, army majors, and major pains in the ass can also play) try and figure out how to give him his meds and still let him drink milk at all 3 meals. …(While we are waiting for them to crunch the numbers, answer me this: How does Alabama score 48 points when their QB throws for less than 200yds and their RB runs for less than 100?)… now try and do it with two meals, and remember that he sleeps from 8pm-6am.

On another front I am transitioning away from being a legal secretary and I am becoming a paralegal.  There are many good things to this switch.  First is that my knees were killing me.  B is that I will be a work from home contractor so I don’t have to wear pants any more.  And 3 is that paralegal is close to paramilitary which basically means that I am a badass.

Dear new Red Dawn creator, when someone makes something that sucks so awesome please leave it alone.  I have not seen your new movie but based solely on the trailers, your movie will suck in a very mundane way.  Come on now movie person(s) you are better than that.  Don't allow yourself to suck in a mediocre and non-unique fashion.  If you are going to suck, suck hard; suck well: and most of all suck uniquely.  

I guess that is all for now.  I will see you when I see you, and until that day please raise your glass and toast Oliver, Cole, and Logan your news channel 4 team.

Stupid Little Bug

You know what I love?  I love sports.  It is awesome and I wish that I could have a job where I was involved only in sports.  If anyone out there knows of an opening for such a job, please let me know.

You know what I hate?  I hate the entire family of fast growing myco bacteria.  Additionally I hate cancer, and I hate my son being in a hospital room (although he is with Unca Chris so he is, I am sure, having the time of his life and is probably about to be kicked out of the hospital of troublemakery), and I hate cancer, and I hate that my son missed his soccer game, and I hate cancer, and I hate that the baseball season is not over, and I hate cancer, and I hate hate hate hate hate hate hate hate hate hate hate hate hate hate hate hate hate hate hate all work and no play makes Jack a dull boy hate hate hate hate hate hate hate hate hate hate hate hate hate hate hate hate that I can't fix him.

This is stupid.  I am tired of getting kicked in the nuts.  I don't aks fo much.  All I want is for my family (that includes the chickens) to be healthy.

Enough feeling sorry for myself.

I have an admission to make.  I have relapsed.  For any of you fighting addiction  you know how hard it is to quit.  I had kicked my nasty habit for an entire season, and I thought that I was in the clear.  But one night I was sitting around flipping channels when I just happened to land on the right channel at the right time, and all my previous work was for naught.  So I find myself back to being addicted, and must ask myself, what would Gemma do?

GI Joe

Well at least now we know, and knowing is a portion (can't remember the exact percentage) of the battle.

They finally figured out why Cole has been having all these fevers.  He has developed a bacterial infection that is in his bloodstream and has infected his lungs.  Now before you freak out too much, we managed to catch it early enough that we can treat it.

The bacteria (who I have affectionately named "stupid son of a bitch how dare you fuck with my kid."  and I am going to go all Gemma on its ass) is part of a family (I think one of the 5 out of NY) of bacteria that can be found in dirt and in water and in air and in everything that touches us.  Now us non-chemo types are able to effectively and efficiently tell Mr. bacteria to take a flying leap into a giant pool of hot dinosaur poop.  Unfortunately Cole is not so lucky.

So Mr. B is here to stay for a while.  You see, he is a slow growing bacteria so apparently it takes longer to completely eradicate the bastard.  By longer I mean that Cole will be on antibiotics for......wait for it.......keep waiting for it.......quit complaining it''''''s not like you have anything better to do.............almost there............here it comes............at least six months, and possibly up to a year.  SUPER (please insert a slight lisp on the S and hold the R for at least 4.32344530948504983045984 seconds)!!!!!!!!!

The crazy thing about this whole banana operation is that it was kind of dumb luck and crazy good timing that we (I say we in order to be inclusive.  I know I am not a doctor but since my premium pays their salary, I can say we.) were able to figure it out.  I have been told by a guy with a clipped ear (not joking) that this bacteria does not usually grow in the normal culture bottles that they use, so it was sheer dumb luck that any cultures grew at all (it was the first one they drew way back at the beginning of last (i.e.g. crappy) week) and it explained why only one culture grew.  They would probably still be TSing Cole had he not had his scheduled CT scan today.  The CT showed images consistent with this type of bacterial infection.

After they figured this out they/we decided to take out Cole's central line.  They replaced it with an IV in his hand, and after they get on the front end of the infection (a few days from now) they will install a pic (k?) line in his arm instead of the central line in the chest.

I know that in the bigger scheme of things 20 months is not very long, but Cole has had his line in for 20 months and I have gotten to the point that I don't even remember him not having it.  It looks strange to see his chest without those damn lines and without that dirty orange pouch around his neck.

Fever is still high (peaked at 104.2), so we have turned the room into an icebox.

Cole will be here in the hospital for a few days, and then should be able to go home, and pretty soon get back into school.

Sorry if this post is more of a standard (well at least as standard as I can be) update, and lack my usual wit and elegance, but I am tired of this crap and don't feel whitey.

Maybe tomorrow will be more fun.  In the meantime please raise your glasses and toast Cole, badass mofo who don't take no crap off of nobody.

Crappy Week

When last we spent time together, our hero had just gotten out of the hospital.  We pick the story back up on Friday evening.  I drove home from work excited to put this insane week behind me and relax (as much as that is possible with 3 boys, 3 chickens, and an epileptic dog with allergies).  We normally go to SJ for family pizza night, but that had been cancelled.  I just wanted to go home, play with the wife and kids, and then after they go to bed find a reason to go across the street so that I can get free booze at Rossi's Pub.  As I am sure you can predict (due mostly to the fact that this entire blog is all about crap that I do not want), my (I think) simple (I tried not to parenthizie, but I just can't help myself) relaxation (now this is getting silly.  someone should talk some sense into me) plan (it is becoming difficult to even get through this sentence) was not to be.  My fatal error was that I failed to realize that weeks start on Sunday (despite the confusing title of weekend)(yes weeks do start on Sunday.  Look at a calendar.  This one was your fault.  Stop interrupting).  Of course when I got home Cole had a fever.  Of course we had to go to the ER (driving to Santa Clara at 6:30 on a Friday = crappy).  Of course we did not get home until 11:45.  Of course I am not done.

Again to recap.  Weeks do not end until Saturday is over.  Now, on Saturday the sun was shining and Cole was feeling good.  So good that he was going to play in his soccer game.  We were playing at the house.  Some of the neighborhood kids came over to play in the tree house and chase chickens.  All in all it was a great morning.  Then, the week did not end.

(Author's Note: If you have read this blog at all you realize that I have only a very tenuous grasp of truth and reality.  However, the next paragraph is completely real and serious)

I was holding Oliver in the back yard and talking with Frank (neighbor) and Elisa.  I was pointing at the garden as I was saying something about chicken proofing the garden when all of a sudden, Oliver moved and  he slipped out of my arms.  He fell to the ground, landing on the cement.  It looked like he hit head first and there was a loud banging sound that just might haunt me forever.  We rushed to the ER, but we are so used to ER visits, especially how long they take, that Elisa just dropped Oliver and I off and took Cole and Logan to the soccer game. (A small geographic explanation is warranted here.  We usually go to Kaiser in Santa Clara for Cole, but for normal ER stuff we can go to a closer Kaiser.  In this instance, we went to SSF).

(Enough of the super serious.  Bring on the irreverence)

The ER at SSF (to which I have now been 4 times.  Once when Cole tried to take a short corner in the apartment and ended up headbutting the corner of the wall, once when Elisa had an ear infection, once when Elisa obtained a freak redwood splinter under the fingernail, and now this) is old and small (the entire ER could fit inside the waiting room of the Santa Clara ER) and has no TV.  So there I was (I forgot to mention that since it was hot outside when I bounced the baby, he was only in a diaper) in the ER registration line with a screaming half naked baby and boy did I feel like white trash.  All I needed was to be wearing a stained wife beater and be drunk (which of course I wasn't.  I should have, per Papa Sam, been holding some booze so that people would think I was drunk and not just stupid).  Some nurse clearly felt sorry for me and rushed me in, completely cutting in front of the lady who was about to puke into her purse, or on the registration lady, or on any one of us.  They took us back to a room and Oliver took one look at all the fun things in a hospital room and immediately stopped crying and started grabbing for things.  The nurse did some quick vitals and then Dr. Skater came in (please note that his name was not really Dr. Skater, but he was wearing vans) (really, a doctor wearing vans).  He took one look at my laughing (I am pretty sure he was laughing at me.) baby and said that everything was fine.  This took all of 10 minutes.  Did I mention that Elisa had dropped us off (the dropping off occurred because the clutch in the Jetta needs to be replaced so it was at the shop) and she had gone to the soccer game.  We were there just long enough to make sure that Cole had started his game.  So then I got to hang out in the SSF ER waiting room with a baby (put clothes on him), trying to keep him occupied.

I did get to see some interesting things.  I think I saw some Chinese men abduct a woman in a wheelchair (but as I cannot understand Chinese, they may have just been her family).  I saw a social worker sting operation (It was amazing and exciting and that is all I have to say about that).  I saw a guy try and hook up with a nurse while he was waiting to go in and see him mom.

Then do you know what happened?  The week finally ended.  Sunday finally happened.  It was glorious and I loved it.  We did not go to the ER.  We (I) did not drop any babies.  We did not have to deal with the plague.  There was no nuclear holocaust.

Just writing about this week was nearly as exhausting as living it (er...maybe not) so I am done for now.  While you are waiting for the next installment please raise your glasses and toast Oliver, hard headed as his daddy.