5-24-11

So today was the big surgery day for Cole.  He went in around 9:45 and was in surgery for almost 6 hours.  I am pretty sure that the actual surgery only lasted about 30 minutes, and the rest of the time was spent photographing all of his differnent body parts for medical textbooks (see the Chapter called, “ideal human form”) , but I can’t prove that.

The surgery was succesful in that the tumor mass was removed, no organs (or pianos) were removed, and 99% of the tumor cells were removed.  They had to leave a sheen on some of the body structures (like the aorta).  She did leave some little titaniam tags next to the sheens (and labled them destroy me please) for the radiation techs (think Star Wars or Star Trek) to know where to shoot their beams of cancer death.

Cole is in the PICU recovering this evening.  He has been waking up about every 30 minutes or so, and has been pretty out of it due to the morphine (which he is not sharing.  Will have to talk to him about that tomorrow); however, I know he is doing fine because all he wants to do is play D&D.  The doctors who have examined him, post-op, have been happy with how he looks.  Now comes the waiting game.  We wait for him to recover.  I think that this is the hardest part.  This is when he looks the most helpless, and I feel the most helpless as a parent.  It is, odviously, very fustrating to have to just sit and watch. 

We have a male nurse tonight, and he is pretty cool.  It is a very different experience having a male nurse.  Instead of polite laughter at my inappropriate jokes, I get to talk sports instead. 

Enough of that, let’s get to the important stuff.  On Monday, the Make-A-Wish people called my people (which means she called me), and let us know that they had approved Cole’s wish for a Disney World Trip.  7 days/6nights of Mickey Theme Park Awesomeness.  Not sure when we will go, but Cole is crazy excited about it.  We just have to figure out when we go.     

I will be in the hospital until Thursday morning, so I will probably do more writing, but for now, please raise your glasses and toast Cole, the heavyweight champion of the Mexical Wrestling League who is more famously known as, “El Pateador Del Culo.”

5-20-11

I have been in that fuzzy brain thing that happens when I get really stressed out.  With each day I am more and more stressed out about the upcoming surgery.  It is strange that the last time that I was really stressed out was on 2/11 (first day of Chemo #1).  Since then, we have been in the program, and Cole has been doing great.

I guess I have to go back to last Friday to get you caught up.  The fundraiser dinner and auction was amazing.  I must give a special thanks to the Friends Helping Friends Committee, Karin Cunningham, everyone who came, and everyone who donated items for the auction.  We had a great turnout, and it was a lot of fun.

I was worried about Cole going into the thing because he was coming off that crappy Chemo #5, and he had not really been feeling all that great.  To my utter amazement, he not only stayed longer than an hour, he actually stayed to the end.  When Elisa took Logan home to go to bed, Cole hung around with me to help finish up.  I tell you, the kid is a rock star.

The weekend was good.  On Saturday we went down to Grandma and Grandpa Rinde’s house to celebrate Logan’s birthday.  Kathy (of Kathy’s Kreative Kakes, who also donated a cake and gift certificate to the auction) made an awesome pirate cake for him (that he is still eating), and we had a very nice time.  Auntie Julia came down with us, and we learned all about laser tag and the correlation between laser tag and Canadian super models.

Monday and Tuesday were pretty normal.  On Wednesday Cole had his CT scan, and then I had to take him to the clinic for a transfusion of red blood and platelets.  That was a fun 5 hours at the clinic.  Yesterday we were back at the clinic this morning for a bone marrow aspiration (which is a fancy way to say that they stuck a huge needle in his hips and pulled out some marrow…fortunately he was asleep).  We had an appointment with the surgeon later in the afternoon so Cole and I decided to go to Valley Fair Mall to kill some time. 

The reason that Cole wanted to go to this mall was that it has both a Weztels Pretzlez (2 actually) and a CPK.  So we went and got a pretzel and then took said pretzel to CPK to eat it along with our cheese pizza and then followed that with a butter cake a la mode (which is French for 1300 calories).  Dr. Taggart should be happy that Cole definitely made his calorie count today.

The meeting with the surgeon was good, but also a little crappy.  I am not really ready to talk about the ins and outs of the upcoming surgery because I am still too stressed out about it.  I do ask; however, that you keep him in your thoughts, prayers, meditations, animal sacrifices, etc.

For now; however, please raise your glasses and toast Cole, lead guitarist for the mega band “She Totally Nailed Me With Her Snot.”

5-13-11

***Please note that I wrote this late last night, but the blog website was down, so I am just now posting it.***

Yesterday was a very interesting day.  I totally didn’t have to use my AK. 

To begin with some ladies from the Make-A-Wish foundation came by to discuss with Cole what kind of wish he would like.  Now for those of you who, as I used to be, are working under the impression that wishes are only granted to those that are losing the fight, so to speak, don’t worry.  The wonderful people of the Make-A-Wish foundation grant wishes to those kids who have diseases and conditions that are life threatening.

So anywhooo, these three ladies came by to talk to Cole about what kind of wish he wanted.  His wishes were: Disney Cruise, Iphone (but Cole, you already have a brand new Ipod.  Why do you need an Iphone?  because Dad the Iphone is more awesome), and trip to DisneyWorld.  The set up is pretty cool.  If they grant his wish, they pay all the expenses and everything.  Pretty Cool.

Also, just as the Make-A-Wishettes were leaving, our neighbors (see Prospect Insider discussions, infra…or is it supra….or is it just super) came by to drop off the brand new PS3 that she got Sony (her employer) to donate for the auction.  She also said that the winner can pick two games of their choice to go along with it.

Speaking of the dinner and auction today, it looks like it is going to be pretty cool.  The Congresswoman’s people (I love saying that) have informed me that she will probably come by around 5ish.  For the auction we have tons of cool stuff including but not limited to: Aaron Rowand signed jersey, football signed by Jim Otto of the Raiders, signed photo of Dan Boyle of the game 7 winning Sharks, a cake from Kathy’s Kreative Kakes, some handmade wood bowls and clocks, homemade beer, Skateboard stuff, some jewelry, cupcakes from Sibby’s, homemade cards, Dinner for 4 delivered to your door (courtesy of Bash Catering), Giants’ tickets, etc etc.  Come out, it is at St. Robert’s Church in San Bruno from 5-8.

In addition, The San Mateo County Times called me for an interview about the dinner.  I must say that Cole is rapidly becoming famouser than Captain Kangaroo.  Check out the paper’s article at http://www.mercurynews.com/san-mateo-county/ci_18053428.  They did a very nice article about the dinner.

My last post was a little premature regarding Cole’s status, but only a little.  He has most certainly been doing better than he was at this stage after Chemo #3, but he is still not back to where he was before going into Chemo #5.  I am happy that each day he is feeling a little bit better, and each day he is eating more and taking less anti-nausea medications.  He event went to Toys R Us with Elisa today to get a birthday present for Logan (who just turned 3 and I am happy to report that he has spent the entire week at school in underwear and has only been wearing a diaper at night.  Now if we can just expidite the learning how to wipe his own butt, life will be super good).

We are going to the clinic today to get his labs drawn.  I am hoping that all will be well.  I will write something about how the dinner goes tomorrow night, but for now, please raise your glasses and toast Cole, pitcher for your San Francisco Giants. 

5-9-11

First to some blog business.  I have enabled comments on the blog, so feel free to comment if you would like.  I had originally disabled comments because I was not emotionally strong enough at the beginning to have a discussion.  I was just writing to vent, and to get things off my chest.  I think that now; however, I am more ready to engage in conversations.

On to new business.

If Cole were a little bit older, this is what he would say to Chemo #5…”How you like me now?”  For those of you who have been with us for a while, Chemo #5 is the same set of drugs as Chemo #3 and they are nasty little buggers.  Last time this set really knocked him on his butt.  He had to stay at the hospital for a couple of extra days, and in the end the only thing that really pulled him out of his nausea and lethargy was the threat of a feeding tube.

This time could not have been any more different.  He had no problem eating (he did not eat much, and did not really have an appetite, but what he did eat stayed down), and no problem drinking.  His spirits stayed high all the way up to discharge (which was not delayed at all).  He did get a little sick this evening before bed, but not even really that bad.  I tell you, that kid is so much stronger that I could ever even hope to be. 

So now my little man is home, and we are 500/600ths of the way done with Chemo.  We do have one more little twist before we can get that last Chemo done.  The surgery.  We are all set for surgery on 5/24.  This means that in a mere 16 days Dr. Sullivan is going to go in and pull the remainder of that little bastard out of my son. 

In advance, I want to say good riddance, and f#*k you to that damn tumor.  Who do you think you are, trying to take my son away from me?  How dare you.  If you were a person, I would have killed you long ago, and I would have done it with my bare hands. 

After the surgery we will have one more round of Chemo (we bought the package deal, buy 5 get the sixth for free), and then we will be done with the destruction phase.  After that we will commence with the Marshall II plan.  We will painstakingly rebuild the good stuff inside him that we had previously destroyed (collateral damage). 

For now; however, let’s keep taking one step at a time.  Please raise your glasses and toast Cole,  Governor.

5-6-11

Thus endeth the 48 hour run of Wii.  Of course we did not play for the entire 48 hours.  We would play for a couple of hours and then do something else. 

During the last two days I have learned some things. 

Number 1 is that I am old.  I remember back in the day when I could play well over 24 continuous hours of a single video game with nothing but chips and Dr. Pepper to keep me alive.  Now; however, after playing for just about an hour, I was ready to call it quits.  Cole kept me going, the little taskmaster.  Granted it was easier for him because when he grew tired of playing, he would just stop, but make me continue.  How can you say no to a kid in a hospital bed.

Number 2 is that I still love Mario.  I love all the secret puzzles and tricks that, once discovered, make the game much easier. 

And C, if you play one game long enough, images of said game will burn into your retinas so that every time you close your eyes you will see, in this case, Mario running and jumping around in your brain.

Another thing I learned is that the advances in the field of medicine (especially oncology) are amazing, and my son will eventually owe his life to these advances; however, we (as a society) have obviously chosen to put our efforts into medical advances to the detriment of the potential advances in chairs that are in hospital rooms that theoretically turn into beds.  Seriously, we are in the 21^st century, and we still can’t make something comfortable for me to sleep on?  What’s up with that?

Let’s put my grumbling aside for a while.  Cole had a pretty good day today.  He did not feel like eating anything, but he was not really feeling nauseous, so that is a partial victory.  This round of Chemo is some bad stuff.

We have been very proactive with respect to the anti-nausea medicine, and so far he seems to be doing better after two days than he was after two days of Chemo 3. 

I am hoping that he can bust out tomorrow, or Sunday at the latest; but for now think of him, and raise your glasses and toast Cole, Financial Advisor.

5-5-11 Heureux mai cinquième

So it has begun……a (mom approved if you can believe it) 48 hour run of uninterrupted Wii session.  Well sort of uninterrupted.  These doctors keep coming in and bothering us with stuff like medicine and information and other such nonsense.  I am happy to report that despite all of those distractions, the princess has been successfully rescued by the dynamic plumbing duo.  Now we have moved on to the bonus secret level.  It seems that it will keep us occupied for quite a while.

We started the first day of the 3 day cycle of Chemo #5, or as I like to call it..Chemo Number 5.  This is the nasty cycle (see cycle 3), but this time I am making sure to be as proactive as possible with respect to the anti-nausea medicines.  They even brought out a new one for us that apparently has only recently been approved for human Americans.

Cole has had a wonderful Alone With Daddy Playing Video Games All Day I Have Cancer And Am In The Hospital Getting Chemotherapy So I Can Eat Whatever I Want diet so far today.  The AWDPVGADIHCAAINTHGCSICEWIW Diet consists of an entire quart bag of Goldfish crackers, almost an entire super stack can of Pringles, and a fruit cup.  As a sign of solidarity, I also partook in an almost entire super stack can of Pringles.  For lunch we will be having mint chocolate chip ice cream.  Cole is planning on writing a book called, “The AWDPVGADIHCAAINTHGCSICEWIW Diet…..the last diet you will ever need.”  I imagine it will be a best seller even before it is written.  In fact, there is not really a point in actually writing it since its best sellerness is a foregone conclusion.  The best seller store can simple just mail us a check.  Thanks.

Right now I am witnessing a fight between modern science and the stubborn willpower of a 6 year old.  Cole was just given a dosage of Benadryl that I think is what they give to mastodons to help them sleep.  Cole does not want to sleep, and is fighting the wonderful effects of the drug.  I had to make a deal with him that he had to lay there for 30 minutes, and if he is still awake after 30 minutes, then he does not have to take a nap.  He lasted about 45 seconds before nodding off.  I hope his dream’s soundtrack for this nap is I fought the law and the law won. 

We have a nurse today that we have never had before.  I find that kind of amazing since we have spent so much quality time here.  We have been moved to the other side of the hall which is nice because the view is vastly superior on this side.  In a situation like this it is the little things that are important.

Well that does it for me for now.  Please raise your glasses and toast Cole, best selling author.

5-3-11

So, here is something cool.  Congresswoman Jackie Speier’s office emailed me to RSVP for the dinner on 5/13 (still can’t get over the fact that it is Friday the 13^th.).  This means one of two things.  Either the Congresswoman is very cool and really wants to help, or (and the odvious actual reason) the government is finally on to me. 

Ms. Speier will be at the dinner sometime between 7 and 8.  And if her presence alone was not presents enough, she is going to auction off a lunch with her (possibly in DC in the Member’s Lounge….sorry flight not included).  We are working out the details with her people (for years I have been trying to interact with someone else’s people and have always been thwarted….how sweet it is….how sweet it is) on how that is going to work exactly, but regardlessly, it will be fun.

And now for the reason that we are all actually here together tonight.  Cole has been doing well.  He went to the clinic today, and instead of getting his blood drawn, he received a bucket and was told to not only pee in the bucket for the next 24 hours, but to store said pee in the ‘fridgerator until tomorrow. 

On a separate not, Cole has decided to start a lemonade stand.  Best chilled lemonade in the Bay Area.

Tomorrow night Cole and I will check back in to a little B&B that we like to hang out at every three weeks or so.  This will be the fifth such trip of the hero in training.  Yes, you may not have known this (Royal Order IV prohibited me from discussing this until after he had passed certain trials), but Cole is a hero, of the olde schoole varietye, in training.  Thus far he has progressed through the training program with more success than even Baldor the Fat.  Epics will someday be written about him.  If anybody knows any blind poets that are looking for a job, please let me know.

All kidding aside, this round of Chemo is the nasty one.  This one really lays him out with the nausea and the lethargy.  Last time we had this set (Round 3), there was some sort of mix-up regarding the anti nausea medications, and he did not get everything that he could have gotten.  I think it was only the thought of his AZ cousins (and the threat of a feeding tube) that pulled him out of it.  Unfortunately this time we will not be able to pull out the AZ card, but I am hoping that if we use effective strategery with regards to medications (for both of us), we can get through this nasty round.

Assuming that we do, with little to no complications, we will be all set for his surgery on 5/24.  I have to say that I have gotten used to the Chemos, the hospital, the clinic, and the drastic change in our lives; however, I am petrified of this surgery.  Of course, Cole does not see it as a big deal.  Once I told him that he will be asleep for the whole surgery, he was totally fine with it.  I am not.

Well, let’s cross that bridge when we get to it, but for now please raise your glasses and toast Cole, restaurateur.  

5-2-11 Fundraising Dinner Update

I am going to blatantly plagiarize someone else for this blog.  As you know the wonderful community of San Bruno is putting on a fundraiser dinner for Cole on May 13th (Friday the 13th.....awesome......).  The following is an email that the President of the PTA at Allen Elementary (yeah I know what you are thinking....wow Jim [by the way this is the first time that I have ever referred to myself in the third person and I feel delightfully dirty for doing it] how do you know so many powerful people?  All I can tell you is that the answer to the question can be found within the question itself.....yeah that was deep.  I think I have been hanging out with Julia and her decadent ways too much lately) sent out into the www world.  I will post some more concrete details as well as a very entertaining description of the items being auctioned off.

From Karin Cunningham:
Hi Friends,

Today, I am promoting a pasta dinner fundraiser for my son's teacher's 6 year old son at Allen School, San Bruno. Little Cole Baker has stage 4 cancer and receiving on going chemo treatments. He was diagnosed just this year. His father, Jim, is writing a daily blog/journal for the public to read. I don't know if her realizes that he is a very good writer and is guaranteed to make you laugh and cry. The link is posted above.

I reposted this blog link on Facebook to get the word out that some help might be needed and was approached by the Friends Helping Friends Committee at St. Robert's, also in San Bruno. They are putting together a pasta dinner fundraiser to help with the almost $30,000 extra dollars needed to help with medical bills. The Friends Helping Friends Committee is a a community group that helps raise funds for people in our community who are battling an illness.

Cole's Pasta Dinner Fundraiser:

Friday, May 13, 2011 5-8 pm Hennessy Hall, St. Robert's Church, San Bruno

Eat in or take out $10. Adults, $5. Children, $25. Family (up to 4 member)

Raffle and silent auction

Come show your support and enjoy a pasta dinner with friends!

Sincerely,

Karin Cunningham (David and Jasmine Ochoa's mom)
Allen School PTA President


***
Thanks Karin