1-31-12.......Day Minus 30

Tonight we go to battle for, hopefully, the last time.  I feel that I should say a few important words to that will live on in perpetuity; however, if you know me, that is not my style.  So, as I did so often in jr. high (hope statute of limitations has run.  If not, the I was just joking…..uh….), I will steal someone else’s stuff and make it my own.  Here goes: (we will be having a contest to see who can be the first one to determine what famous speech I have brutally plagiarized and butchered.  Entry fee is $5.00.  Winner gets 3 points)

Cole, You are about to embark upon the final battle of a Great Crusade, toward which you have striven these many months. The hopes of the world are upon you. The hopes and prayers of people everywhere march with you.  

In company with you are your brave family and friends, and unknown brothers-in-arms, fighting the same fight, you will bring about the destruction of the cancer war machine, the elimination of all evil malignancies over your body, and security for ourselves in a cancer free world.

Your task will not be an easy one. Your enemy is well trained, well

equipped and battle hardened. It will fight savagely.

But this is the year 2012! Much has happened since the Cancer was diagnosed 2011. The United Medications have inflicted upon the Cancer great defeats, in open battle, man-to-man. Our Chemotherapy has seriously reduced its strength and its capacity to wage war on your body. The BMT Home Front has given us an overwhelming superiority in weapons and munitions of war, and placed at our disposal great reserves of learned doctors.

The tide has turned! The cancer free men of the world are marching together to Victory!

I have full confidence in your courage and devotion to duty and skill in battle. We will accept nothing less than full Victory! 

Good luck! And let us beseech the blessing of Almighty God upon this great and noble undertaking.

Pretty Cool huh?

Seriously, Cole I wish you Godspeed on your journey this week.  I physically will be there for part of it, but know that I am always there.  Every second of every hour of every day.  You are never alone.  Rest assured that this week glasses are raised everywhere for Cole, my son.

1-30-12.....Day Minus 31

I know that this blog is about Cole, but there are some serious issues which first must be cleared up before we can, in good faith and with peace of mind, proceed.  If you are an adult, and if you are wearing jeans, then you should not be wearing brightly colored crocs.  There is just no reason for that kind of insanity.  Please stop now.  You know who you are.

There, now let’s move on, shall we?  We are in the home stretch of what is visible in front of us.  Did that make sense?  Why am I asking questions?  Hello, is anyone there? 

Anyway, Cole begins his last scheduled hospitalization on Tuesday night.  We are hoping that this week will go by fast and I can get my boy back home for good.  While Kaiser Santa Clara hospital is not the worst place in the world to spend a few nights, I think that I can safely say that I do not ever want to see the 3^rd floor again. 

Last Friday, Cole and I went to his pre-admission doctor’s appointment.  First off, Cole has surpassed the 50 lb mark.  50 lbs has been, for me at least, the magic, albeit slightly arbitrary, weight number for him.  Throughout all of these treatments (Chemo, BMT, Radiation, Immuno) we have been struggling to get his weight back up to a normal weight for a 6 year old of his height.  He is not there yet, but he has definitely on his way.

At the appointment Dr. Taggart also informed us that she had given the big dogs at UCSF Cole’s file to review.  The reason for this is that his last imaging still showed some neuroblastoma cells.  Dr. Taggart said that these cells could be dead cells, mature cells, or active cells.  There is no way to know just by the imaging.  Odviously dead cells are the best.  Mature cells are good because they will not reproduce.  Active cells are, of course, not ideal. 

Since the area that is lighting up on the MIBG scan (MIBG is the grown up word for the test than can detect neuroblastoma cells) has not increased in size, Dr. Taggart is optimistic that the cells are either dead or mature.  In an abundance of caution; however, she sent Cole’s file up to UCSF for them to look at this issue. 

UCSF basically came to the same conclusion that Dr. Taggart came to.  So, after this week the next step is to do another set of imaging.  If there is no change, then they are going to have the formal tumor board look at Cole’s file in order to make a recommendation.

They might try and perform a biopsy.  By pulling actual cells, and looking at them under the microscope, they will be able to say with certainty what is the diggity yo.  The difficulty with getting the biopsy is that since the cells are so close to the aorta (which is the reason they could not take them out to begin with) they might not be able to, safely, get to the spot to grab the cells.

If the biopsy proves not worth the risk, they will probably recommend that we do nothing but watch.  We will regularly monitor and image him, and if the area does not ever increase in size, nothing will need to be done.

So that is the skinny on where we stand.  I say good bye for now, and ask that you please raise your glasses and toast Cole, radish farmer.

1-25-12

I was a history major in college, so I understand the struggle that has gone on between workers and employers since the industrial revolution.  I get it.  I understand that many of the comforts and rights that I enjoy today (8 hour work day, overtime pay, rest breaks, meal breaks, the right not to be beaten unless I want to, etc.) at my workplace have come as a result of workers fighting, mainly through the use of the strike.  I get it.  Now please don’t think me ungrateful, but I have to say that there are some strikers who are just being selfish.

Take for example the big nurses’ strike that is coming next week.  Now some might say that they are badly needed workers doing a thankless job and are in dire need of more pay.  Fine…whatever, but did you really have to set the strike for next wee?  I mean, come on, Cole has not been in the hospital for the last three weeks.  Couldn’t you have done this last week?  Now Cole has to delay his treatment (maybe final?  Don’t want to be too optimistic, but I am losing that battle) by 2 whole days.

(Please imagine I am speaking as if I had cotton balls stuffed in my cheeks as you read this paragraph) Now I have to make arrangements to have Cole start his treatments on Wednesday.  If something were to befall him during this time…If he were to have an accident….If he were to accidently hang himself in his jail cell…I am going to blame some of the people in this room….

All that being said, I am looking forward to knocking this last treatment cycle out.  I am guardedly, cautiously, and hungrily optimistic that once done with this treatment, we will never have to see the inside of the PICU again.  That is my wish and dream.

Cole has been doing very well as of late.  He has been going to school (orders to the contrary be damned), and my top secret informers tell me that he has been seen running and playing with other children at school.  Thank (insert deity, spirit, or favorite celebrity of your choice here) for that.  I have been scared that he would have trouble integrating himself into the social fabric that is first grade; however, as with seemingly everything else, he makes me feel foolish for my fears.

We are eagerly awaiting March 1^st (Thing 3’s entrance to the world), and have been preparing the homestead for his arrival.  Cole and Logan are back in the same room.  A room which has been painted with the San Diego Chargers in mind.  The baby’s room has been painted.  As soon as the crib gets here, we will be all set (except for buying diapers, wipes, a stroller, and all the other things that babies need.  You know for only being a few pounds, they sure do need a lot of crap)

I guess that is all for now….wait…I almost forgot.  I was looking at the stats today and I noticed that this blog has generated over 33K hits from over 10 countries since its inception.  I know that is not a big number within the world of internet blogging, but to me it seems close to infinity.  I want to thank you for your support this last year, and let’s all hope for a better 2012.  In the meantime please raise your glasses and toast Cole, market research analyst.

1-12-11

So here I am watching NFL Live, and they are talking about the Green Bay Packer’s O-Coordinator’s son who passed away.  The advice that came out of the discussion was to make sure that you hug your kids a little more, because you never know.  True Dat, yo.

Now don’t get alarmed, Cole is doing well.  He came out of this last round of therapy in better shape than any other round, at least that I can remember.  He continues to respond to treatment beautifully, and he will soon need a haircut (although I don’t think that I will ever push him too hard to get it cut.  I think that he has earned some shagginess, don’t you?).

We still have a couple of issues that need to be resolved.  First is that his T-Cells have not resumed function (thus his immune system is still compromised).  As a result, he has not been cleared to start back at school.  This is causing some consternation here at Casa San Miguel as I am rapidly running out of FMLA days, and we can only maintain for so long with me only working two days per week.  It is likely to get a little dicey around here between now and March 1^st. 

Cole does not go back to UCSF to get his T-Cell function tested until February 15^th, and we don’t get the results until 2-3 weeks after that.  The insanity of that is further compounded by the fact that California Baker Boy #3 (Don’t have a name yet.  I am willing to sell naming rights though, just like major sports stadiums do.  Think about it.  Oracle Baker, Adobe Baker, Geico Baker, KB Homes Baker.  If you want to have a chance, send money to the Cole fund and whoever sends the most will be considered) is set to arrive on March 1^st.

The other issue is that there is still some cancer cells that show up in the imaging.  These cells were so close to the aorta that the surgeon did not want to risk trying to cut them out.  The problem with the imaging is that the results do not tell us if the cells are active.  They could be dead cells, they could be live cells.  They could be mature cells that will not multiply any more.  We just don’t know.  The not knowing is killing us. 

Kaiser is in contact with UCSF regarding the next steps.  My most recent understanding (which often ends up being woefully incomplete) is that there are two likely next step scenarios.  First, and mo betta, is that we don’t have to do any more treatments.  We just monitor to make sure that there is no spread.  This is referred to as the stable disease plan.  Second is something called MIBG therapy.  Basically this is a form of radiation therapy.

Now on to more interesting news.  This coming Friday, Cole and I are going to his first photo shoot.  That’s right, he has been accepted to be on America’s Next Top Model.  No wait, that’s not right.  Actually, he is going to be in a calendar that the Make A Wish Foundation is putting together for a big fundraiser event that is coming up in February (If you are looking for a tax deductible donation location, I cannot recommend Make A Wish any higher.  They gave us an amazing gift.  Made us feel like VIPs.) called Wine and Wishes, or something like that.  My understanding (see supra re: my understandings) is that it is a dinner that has multiple chefs busting out some yummy grub (yummy grub is chef talk for good food), and that this calendar will, in some way, be part of the event.  The photo shoot subposebly will have wish kids as well as some of the chefs.   Should be cool.  I am hoping for two things to come out of this shoot, well actually three.  First is that “They” recognize the greatness and give us a million dollars (I keep waiting for “Them” to do this, but “They” continually fail to do so).  Second is that we get a free calendar (love the swag).  Third is that the chefs are uber famous chefs and/or Top Chef contestants and/or Padma.  We will see.  For now; however, please raise your glasses and toast Cole, franchise quarterback.

1-3-12

Hospitals smell funny.  Sleeping in the little room on the uncomfortable torture device sucks (although the suckiness is much less since the acquisition of the magic air mattress).  Very loud nurses coming in at 1am making more noise than they should and talking to themselves is ridiculous.  Beeping machines minutes after I have fallen asleep is just plain annoying.  All these, and still I miss being there.

Not being in the hospital is like having to sit out of a big game because you are injured.  You have faith in your team, and you know that they can get the job done; however, you still want to be there to make sure that your team wins. 

Today Cole finished day 2 of the 4 day treatment for this week.  This is the nasty week, and the nastiness started today.  Fortunately Chris was there today, and we all know that he is well versed in nastiness.  Wait, did that last sentence seem like an inappropriate comment?  Oh good, that was the intention.

Cole does seem to be doing better that the last time he had this same series of meds.  He did have a pretty significant fever (topped out at 104), but it seems to be under control now.  These fevers are one of the common side effects of this regimen, but it still sucks to see him suffer through it.  I am sure that in a few days he will be back to his normal self.  For now; however, please raise your glasses and toast Cole, pirate hunter.

1-2-12

Happy New Year

Let me tell you what I am tired of…

Well first, I haven’t written in a while.  I don’t know why, just haven’t felt like it.  I know many of you have missed the daily peek into my brain (for which you should really have your head examined), so welcome back.

I don’t remember what my last post was, so I will just give an overall update. 

Cole is working his way through the immunotherapy portion of his treatment.  If all goes according to plan, this should be his last therapy that includes hospitalizations.  Within the immunotherapy world, he is working through the 4^th of 6 phases (fortunately only 5 of which include hospitalizations).  Phase 4 is the nastiest one, and I am not looking forward to it.  Grandma Kathy came out for week one of this phase and Unca Chris is out this week for week two.  Strangely, I am having trouble coming to grips with the fact that I will not be at the hospital, and possibly will not be back again.  It is wonderful that we have so many family members who are willing and able to set their lives aside to help out. 

Oooh, just had a random thought.  They should totally remake Red Dawn.  Not sure how to remake it and have it be relevant to today, but that needs to happen.  WOLVERINES!!!!!!!!!!!!!!

Cole has (now kind of unsurprisingly) been responding very well so far.  His hair is all the way back, and has grown into an amazingly combed position.  He is eating well (amazingly mo betta in the hospital last time, where he usually does not eat anything)

Over Thanksgiving, we went on the most amazing trip to Florida, courtesy of Make A Wish.  I know many of you followed my sporadic tweeting so you have some idea of how the trip went.  For those of you who didn’t, it was killer.  I might write about the trip in more detail in another posting, but for now rest assured that we had the best time.  Thanks to Chris’ team for coming with us.

Cole has really gotten into Star Wars lately.  He and I watched A New Hope in the hospital, Empire Strikes Back (too much talking for him), and Return of the Jedi.  We have also been running through Star Wars Lego on the Wii. 

Now back to what I am tired of.  I am tired of walking past Cole’s room at 10:13 pm, and not seeing him.  I am tired of missing work because this damn disease keeps him from going to school.  I am tired of worrying about how we are going to make up the missed pay from missing work.  I am tired of being stressed out about the fact that I am almost out of FMLA days.  I am tired of having to explain to Logan that Cole has to go to the hospital again.  I am tired of Cancer.

Well that is all for now.  Please keep Cole, and the rest of our family, in your thoughts and prayers.  Also please raise your glasses and toast Cole, Jedi Knight.