4-26-11

You know I can handle the vomit (although thankfully there has not been that much, and even less on my watch), watching the needles go in, watching blood transfusions, hair loss, etc.  Mind you it is not easy, and I do not mean to make light of all the crap we are going through, but at the end of the day, I can handle it.  I can deal with making plans for surgery, stem cell transfusion, and multiple consecutive sessions of radiation with no problem.  I can deal with all of these big things, but it is the little stuff that kills me.

Today I was at the oncology clinic (more on that later) with Cole and I saw a little girl about Cole’s age walking with an ever so slight limp.  All of a sudden I was filled with guilt at the memory of an unaware dad pulling his son through the streets of San Francisco and trying to force him to “walk normal.”  How was I supposed to know that he had a monster eating him from the inside out?  My main thinking brain knows that I could not have known; however that does not alleviate the guilt.

Also the last few nights Cole has asked me to scratch his back.  Laying there in his bed scratching his back took me back to the time before diagnosis when the only think that would help Cole sleep or just stop crying for a minute or two was for me to scratch him (his ass specifically).  I remember feeling a little bitter that I was not getting a good night sleep because I had to lay on that uncomfortable futon mattress for hours on end.  Now when I come out of scratching his back I feel like someone punched me in the stomach.

OK we are done with that, and with feeling sorry for ourselves for now.  On to the updates…  Today Cole and I went to the clinic to meet with Dr. Taggart and get his labs drawn.  For the previous 24 hours Cole had been kind of droopy and did not really have an appetite.  As soon as Dr. Taggert walked into the exam room, she noticed that he looked a little pale and said he would probably need a transfusion. 

Sure enough our normal 20 minute clinic visit turned into a 4 hour tour…a 4 hour tour.  Fortunately we had the run of the place which means that we had uninterrupted use of the large screen TV to play Wii on.  That is a mischaracterization of what happened.  You see, I had gone to get lunch and all Cole wanted was ice cream.  So while Cole ate his ice cream, he directed me on how and what to play on the Wii.  Then, after he was done eating, he was so cold from being in a doctor’s office (seriously why does it have to be so cold?) and eating ice cream, and getting blood (they said the blood was cold…is that why Cole has started growing scales?) that he just wrapped himself in his blanket and continued to direct me.  I was very fortunate to have a good Wii coach, and I must say that I performed admirably on Wii playground.  

Back at home later this afternoon, Cole was feeling better but had problems eating his homemade hamburger, fries, and pickle due to his mouth sore which is right on the front of his tongue (looking back maybe a bunch of salty foods were not the best menu choice).  The plan for tomorrow is for him to eat some egos and then try and find some fairly bland food to try and get his calories up.

Also I am pleased to provide a little update on the May 13^th fundraiser dinner in San Bruno.  As of right now the auction will be a silent, blind (not sure the exact verbage) auction.  This means that each item will have a box attached to it.  If you want to place a bid, you will put in a piece of paper with your name and amount.  At the end of the night, I will figure out who has the winning bid for each item and contact that person.  We already have some pretty cool stuff.  We have a signed Giants’ Jersey (Aaron Rowan), a gift card to Draegers, a gift card to Half Moon Bay Brewery, a gift card to 231 Ellsworth, a few passes to the Discovery Museum in Sausalito, some skate gear from Atlas Skate Shop in San Bruno, some items from San Mateo Lock Works, a cake from Kathy’s Kreative Kakes, and I am sure there are others that I can’t remember off the top of my head, but please come by and have some awesome spaghetti and bid on some items.

For now; however, please raise your glasses and toast Cole, Veterinarian.        

4-21-11 Let's Go Giants

Dear Blog it has been four days since my last entry.  During that time I have been busy spending time with my family and enjoying life.

Cole came home from the hospital on Sunday evening, and has been doing very well all week.  Elisa has been home on Spring Break, so the two of them have been having the best of times hanging out.

Cole had a clinic visit on Tuesday, and his labs came back very good.  His WBC was so high that they took him off the shot.  He has labs again tomorrow, and will likely be back on the GCSF tomorrow evening.  He is not too upset about that though because he has grown accustomed to the shot, and now it is only a minor annoyance. 

He has been operating at a nice and high level of energy, and is even going to go ride bikes with his buddy Noah tomorrow.  All in all he has been doing well; however, I am not looking forward to the next round of Chemo as it is the same set of drugs that was in Chemo #3, which floored him.  At least this time we know what to expect and will be much more proactive in attacking the nausea.

I want to give everyone a heads up that on May 13^th there will be a fundraising dinner in San Bruno.  There will be a donation box at the door as well as an auction.  We are still getting the items for the auction together, so if you have anything you would like to donate, or if you are a business owner, or know one, that would like to donate gift certificates and such, that would be greatly appreciated.  Drop me an email or catch me on facebook.  So far we have some pretty cool stuff that has been donated (even a signed SF Giants thing……stay tuned for what it is….if I feel like telling you…..which I will probably do later……I just like writing like this…….).

I will post again after Cole’s appointment tomorrow, but for now please raise your glasses and toast Cole, Federal Magistrate. 

4-17-11 Que Sera Sera

I love the Universe and all of her little jokes.  For those of you who are in the know, you know, prior to Cole being blessed with this wonderful little sum bitch Cancer, I had applied to Golden Gate Law School.  Well after Cole’s diagnosis, I had all but decided that there was no way that I could possibly start law school.  This was for two major reasons.

First was that we did not know what kind of timeline we were going to be working with respect to Cole’s recovery/hospital stays/etc so I did not want to lock up a large number of hours with Law school only to have to drop out because I had to attend to Cole too often.

Second was that it did not seem wise to take on cxx dollars in additional debt while at the same time asking people to donate money to Cole’s fund. 

I had accepted that I was not going to go to law school, and was completely happy with the decision.  I was really enjoying being home with Elisa and the kids every night, not working on weekends, and just enjoying life (or at least as much as that is possible when you kid has an advanced Cancer).

Well the Universe decided to throw another curve ball at me.  In yesterday’s mail, I received my acceptance letter from Golden Gate Law.  I was not surprised that they accepted me.  What did surprise me was that they are offering me a full ride dean’s merit scholarship.  Under any other circumstances I would have been bouncing off the walls and today would be nursing a hangover, but given Cole’s situation, it just makes for a crazy hard decision.  Thanks Universe.  You definitely keep me on my toes.

Speaking of Cole, he is all set to bust out of the hospital this evening.  We are just waiting for the last medication drip to get finished (should be around 6:30 this evening), and then we should be able to get out of here.

Cole has tolerated this round of Chemo fairly well.  His nausea has been manageable (not one vomit…knock on wood), and he has been active and alert the whole time he has been in.  He has not really had too much of an appetite, but he eats when pressed, and he has been drinking well.  The Doctors are very happy with his progress, and so am I. 

It amazes me how well he takes all of this.  He has completely accepted the fact that his life now includes all of this medical stuff.  He truly is an amazing kid.

That is all for now, and we will speak more in the future, but for now please raise your glasses and toast Cole, project manager.

4-14-11

I am in heaven and Carne Asada is its name…er something.  Thank you Papagayos for a wonderful burrito. 

I am in the hospital with Cole and the wonderful Rachael nurse lady.  Hopefully we will have a quiet overnight nurse. 

We are watching 110 minutes of SpongeBob Squarepants.  Elisa for some reason hates me so she pulled the movie out of the DVD cart right before her and Logan left.  SpongeBob is weird. 

So far Cole has been handling the Chemo well.  He ate a large cheese quesadilla and about MC chips, complete with salsa, guacamole, and crema….mmmm crema….

Tomorrow Cole and I are going to brave the dungeons and maybe face a dragon or too.  I also brought Pirate’s Cove, so maybe we will play that.

I am hoping that Cole feels like going to sleep early tonight because I am exhausted, my brain still feels like mush.  I want to snap out of this, but I am not sure how.  I think that when we get closer to hospital time, my stress level increases which causes my brain fogginess.   

For now; however, please raise your glasses and toast Cole Cartoon artist.

4-13-11

I have been finding it harder and harder to write as each day passes.  I am not sure if I am starting to wear out or if I am just settling into my new life that includes a kid with cancer, but irregardlessly, it is harder.  It is not harder to actually write.  It is harder to make myself sit down, open the computer, and get started.

I also have been noticing that my brain is intermittently sluggish.  You know when you are trying to watch a video on the internet (hey, enough of that.  This is a family blog…not those kinds of videos), but you have a slow connection.  The video will play just fine and then freeze for a while, and then play just fine again.  That is kind of how my brain, and my me-ness has been.  I will be going along just fine and then suddenly I freeze inside.  I appear to be moving along as regular, but it is just a ruse.  My body moves by rote, but my mind is frozen.  Then all of a sudden, I am moving and thinking as normal again.  It really sucks.

OK, boring emotional and crazy stuff is done.  Let’s move on to Cole and the rest of the team.  Cole is back in the hospital for Chemo.  Elisa has the first overnight and then duty tomorrow.  I hate when she is there because I cannot sleep when she is not in the bed.  I sleep better at the hospital on that god awful chair bed thing than I do in my nice comfortable bed without her. 

Cole should, hopefully, be back out on Saturday.  The doctors said that this round of Chemo will be less nauseating than the last round, but a little more than the first two rounds. 

Cole has been in really good spirits for the last couple of weeks.  He has been eating well, and has even been learning how to cook.  His weight is up, and he has almost breached the sought after weight of .025 tons.  He has developed a taste for milk with whipped cream to go along with the staples of Totinos pizza, pancakes, grilled cheese, and the fattiest salad dressing in the entire world.

I’m done for the night, but until next time please raise your glass and toast Cole, lyrical gangsta.

3-8-11 (sort of...started writing on 3-7-11)

Now as a rule I am completely unable to watch any show or movie that has a kid being hurt, or being evil, etc, and ever since this thing with Cole has happened the list of self-banned material has increased.  With all that I somehow found myself watching a show (Criminal Minds, a show that I normally really like) that involved a man who had lost his entire family over something that was out of his control (in this case drunk driver killed his family) and a kid that was seriously sick (sociopath.  I know it is different but a sick kid is still a sick kid).  I should have known better than to watch it, but I could not turn it off.

It got me to thinking about how sucky (yes it is a word) this whole thing with Cole is.  If Cole had gotten Cancer because I smoked around him, or because I fed him lead paint for breakfast, or I made him an asbestos sweater.  But none of those things happened.  Cole just drew the short end of the stick.  He lost the lottery.  What a shitty thing this is.

Now you are probably thinking that Cole must have been having a few bad days, or the vomiting has been severe, or something else bad has caused me to start dwelling on the unfairness of it all.  Actually the opposite is true.

Today Cole and I had a super fun day.  We played Wii for way more hours that will make Elisa happy (Elisa, you are expressly forbidden from reading this paragraph).  I taught Cole how to add with carrying (now called regrouping).  I helped him to start writing a story.  I made him cook his own lunch.  We made cupcakes.  We laughed, and generally had an awesome day.

So there I was watching this show that I should not have been watching when I heard Cole cough twice within a span of 2 minutes.  For all of the rest of you with kids, you know that when your kid coughs, your ears perk up but you otherwise continue with what you were doing.  I, on the other hand, ran into his room with a bowl just in case he was going to be sick.  He was not, but after I ran in there I looked down at him and saw how fragile he still really is.  He is not that robust, healthy, chubby little boy that I remember from just a few months ago, and it is just not fair. 

With all of that Negative Nancying (yes it is a word, stop interrupting please or we will never get done) over and done with, I am happy to report that Cole is doing well.  He had an appointment at the clinic on Tuesday.  He counts were high enough that he did not need a transfusion, so that is good.  He is still getting his daily shot though.

We go into Chemo #4 next week.  We are inching closer and closer to the surgery.  I think that right now that is my biggest fear.  It is not the surgery itself that scares me, but I am scared that they will look at his CT et al and say that they can not operate.  I don’t know if I will be able to handle it.

I am hopeful that everything will continue to go according to plan, but in the meantime please raise your glasses and toast Cole, FBI agent.

4-2-11 Cole is 6!!!!

Forgive me blogger for I have sinned.  It has been 5 days since my last blog. 

This has been a crazy 5 days.  You know when you have those weeks that seem to last forever (whether for good or bad or interesting reasons), and then when you look back on it, you are amazed that it was only 5 days?  Well that has been my week.  It has been such a crazy week, jammed with awesome, difficult, and interesting things that for the first time in the history of my life I had to go back and review my last posting to see what I had last talked about.

After reviewing my last post (and I must say I am a wonderful blogger), we are ready to begin. 

Cole finished his chemo medicine on Sunday afternoon, but had to stay in the hospital Sunday night for post hydration.  Sunday night turned into Monday night and it wasn’t until Tuesday that he finally got to go home.  This third round of Chemo really kicked his ass with respect to nausea.  We scrapped the super big Arizona Baker surprise and Chris spent the night with him on Monday night.  We did manage to have Chris, Jackson, and Sophia do a muted surprise at the hospital, which helped a bunch.

On Tuesday one of the doctors came in to talk about Cole.  At that time Cole had not eaten anything or drank anything that had stayed down for about 48 hours, so you can imagine that my little boy was just laying there like a blob.  He was completely withdrawn and would not talk to anyone.  The doctor started to talk about the likelihood of putting in a feeding tube into Cole’s nose.  Cole rose from death’s doorstep and said, just like John Wayne would have (except make the exchange from the gun), “Give me an animal cracker.”  Not too long after, Cole and Chris busted out of the hospital.  They keep telling me that the hospital actually did discharge them, but I remain skeptical.

Iregardlessly, once we finally got him home, he was still very weak and had trouble keeping anything down.  Jackson, Sophia, Logan, Elisa, Chris, and I used our magic powers of awesomeness to bring him around to the point that he is back to eating his frozen pizzas every day (Totinos…$1.50 per pizza…..42 grams of fat and about 1,000,000 calories which means that it is the most efficient calorie/$$ machine in the history of the world….and they are also strangely addicting….I think someone should look into this), being sassy, and most importantly smiling again.  I can not begin to describe the effect that Jackson and Sophia had on Cole, and I can not thank them enough for coming.  I really look forward to them moving out here for good.

I did have one very interesting and sobering moment.  One evening Cole was not feeling super great, and he asked me to scratch his back for a while.  As I was doing this, I thought back to when he first got sick (before we had any idea of what it was), and he would wake up crying in pain and feverish, the only way to get him to sleep was to lay with him and scratch his back.  It was very painful for me laying there thinking about that and how at the time I was not overly concerned with Cole (I just figured he had the flu or something.  I mean Cancer, really? ).  Now I am not the sort of person who usually dwells on things or lets guilt get to me (some would say to my fundamentally shallow range of emotions), but that night, thinking back, almost crushed me. 

As we approached Friday, April 1, 2011, the amount of stuff that Cole was acquiring was reaching critical mass, so we authorized some early birthday present opening.  He got some very cool stuff (games, Sponge Bob, and the like), but one gift blew him away.  Elisa’s friend, and former co-worker, teaches in Cupertino (or somewhere down that direction)  and has been talking to her class about Cole.  These kids took it upon themselves to raise enough money to buy Cole an Ipod Touch 4G. Unfreaking believable.  I hate to say that this gift totally overshadowed the gift that we got him (a new bike), but you should never feel bad about getting beat by the best (especially all you Wildcat fans).

On Friday Cole, the AZ Baker, and I all played some D&D (for those of you who are either not nerdy enough or too young to know what D&D is, please go find a 30ish nerd to explain), and Cole really got into the imaginative story aspect of the game.  This is a game that I played as a kid, and it makes me so happy to share it with Cole.

We also had a great party on Friday.  Given Cole’s iffy state with respect to how he was feeling, we tried to keep the party small.  We told him to invite 4 boys to the party.  In my mind it was going to be a pretty laid back party that would probably involve some video games.  Well I did not figure in the additional family members that those kids would bring, the AZ Bakers, nor the Rindes.  By the end of it all, we had a full house and a front yard full of screaming kids.  It was a little overwhelming for Cole who spent most of the party in a corner of the deck watching.  I know he was happy to have this return to a normal life event that was not defined by his Cancer even if he did not seem to show it on Friday.

Cole opened the rest of his gifts on Friday evening, and I must thank all of you who were so generous (most of you above and beyond what you have already given or helped) to help make Cole’s birthday one that he will remember for all the right reasons.  Thank you.

Today we all went to the local nerd cave (also known as Gator Games) and Cole got to pick out a character figurine and some dice.  Welcome to nerdville my son.  The AZ Bakers left, and we then headed down to SJ to hang with the Rindes.  Cole got to ride his bike around (and so did Logan who inherited Cole’s old bike), and we just enjoyed the nice weather.

All in all it was a nice week and I am glad that it is ending with Cole feeling good.  We still have a long road ahead of us, but for now please raise your hand and toast Cole ESPN analyst.