2-26-11 Peloncito

Yes the hair loss has begun.  It started yesterday.  Cole first started finding hairs on the dining room table as we were eating dinner.  He thought they were Elisa's, but they were obviously not.  Now we knew that this was going to start happening around this time, but I had been delaying telling Cole about it.  The reason for this is twofold.  First every time I have to tell him something that is taking a piece of his childhood away, or takes another piece of control over his own life from him, it makes me sick.  Second is that I wanted him to have as many normal days as possible, especially in light of the unplanned hospital stay earlier this week before dropping another shitty bombshell on him.

Of course once we told him, he accepted it as he has accepted everything else.  He said, "ok" and then went about with the rest of his dinner.  We did talk more about it, and gave him some choices of what to do.  We said that we can leave it alone, we can shave it now (Elisa's choice), or we can do something crazy like shave his name in his head (my choice).  He has, so far, decided to to do nothing.  So far the hair loss is not extreme so it is only a minor annoyance.  I am sure that once it becomes more annoying and noticeable, he will choose to have it shaved.  Hopefully he will let me shave some designs in his head. 

On another note, we went to UCSF yesterday to meet with the doctors there regarding the stem cell collection and transfusion that is part of the treatment.  The meeting went well and on 3/17, Cole will be back up there for the process of collecting his stem cells.  It seems like the process is not overly sucky, but it will not be a super fun time for anyone.  They have to sedate him (but not with general ), and put an IV line into his leg.  The collection will take all day, and possibly the next day as well. 

I had an interesting day today.  Cole was in great spirits and seems to really have taken to his high fat, high protein eat anything and everything crappy for you that we can eat.  Of course, and purely out of fatherly affection and to show solidarity, I have been eating the same stuff.  Cole's best bud, Noah, came over today and they had a great time playing, and even went outside to ride bikes and scooters.  While that was great, I took our car into the shop and found that it needs break pad and new rotors.  Yea for me.

So Elisa and I were watching Love Actually this evening.  She went to bed before it ended, and I found myself watching the end.  I have this sickness whereby any movie that I am watching, I have to watch the end.  It doesn't matter if I like it or not, I have to watch it through.  For those of you who haven't seen the movie, there is one character who is a 10ish year old boy who is madly in love with a girl in his class (who happens to be a world class singer, but that is beside the point, and I am sure he just loves her for her bad teeth....it is set in England after all).  As I watched this cute little romance play out (which concluded in an awesome pre 9/11 run through the airport with the cops hot on the boy's heels as he tried to catch his love before she flew away), I suddenly was hit with the thought that there is a chance that Cole may never get the chance to make a complete fool of himself in order to impress the girl of his dreams.  That means he may never fall in love.  He may never feel that feeling that I have every time I see Elisa.  That thought just killed me.  It really pisses me off that I am getting to the point where I can't remember not feeling like someone has kicked me in the nuts every single day, and I am getting tired of it. 

That being said; however, I ask that you please raise your glasses and toast Cole, distiller of fine spirits.

2-25-11

Well today sure is a rainy, stormy day.  Hopefully it is not a metaphor for Cole's day today.  He had a great day yesterday.  His appetite seems to be back, and is embracing his diet of high fat foods like any normal 6 year old (yes I know he is not 6 yet but his birthday is less than 2 months away so leave me alone) which means that he pre-ordered doughnuts for breakfast this morning.

Yesterday was a fun day with Cole.  He turned on his radio and moved his chair and rug out of the room, and created a dance floor.  Just in case anyone got lost or distracted in the living room, he made signs directing all the party people to the dance floor in room 7.  Cole also received a visitor from his school, Noah (his best buddy).  Noah brought Cole his homework and various other things from the class.  Cole was very happy to see his friend, and he may be having a playdate with his two buds this weekend. 

We have a busy day today.  We have to go up to UCSF to meet those folks, and presumably do some paperwork.  UCSF is where the stem cell transfusion will take place.  They (not sure if Kaiser or UCSF...need to check on that) are going to harvest Cole's stem cells after the second round of Chemo (which starts 3/4), and then after all 6 Chemo treatments (and a surgery for good measure), Cole will be up at UCSF for a couple of weeks while they give him his own stem cells back. 

I would like to take a moment to comment on the overall awesomeness of modern medicine and science.  There, I commented.

Cole also needs a dressing change for the dressing on his chest, which covers his Broviac (permanent IV), and the Kaiser people have asked UCSF to do it when we go up this morning.  If UCSF is unable to do it, then we will have to drive down to Kaiser Santa Clara to get the dressing changed.  Hopefully we will not end up having to experience another unforeseen stay at the hospital. 

For now; however, please raise your glasses and toast Cole, news anchor for Channel 2.

2-23-11 Back Home

Cole is back home!!!!  More on that to follow.

I would first like to take an opportunity to offer up a special thanks to someone.  Now there is no way that I could, in this posting, possibly thank everyone that has helped us thus far in this process.  I would like to; however, share an amazing story with you that comes to us by way of Washington.

My neighbor, Joe, is from Washington.  When he heard about Cole he reached out to friends of his up in the rainy Northwest.  Cole's story was told on the radio, was tweeted, and ultimately ended up at www.prospectinsider.com.  Just putting Cole's story on his website, which is a sports site, was a wonderful thing to do, but Prospect Insider went even further.  He offered a forever subscription to his website for anyone who donates $50.00.  None of these people know me nor my family; however the generosity of these people has been astounding.  Washington is being well represented, and for that I thank you Prospect Insider.

Now on to the reason that we are all here.  Let me quickly recap the last few days.  On Monday Cole and I went to the clinic for his scheduled blood draw.  It took all of five minutes and we found ourselves back on the road home.  We had a great day.  Some neighbor kids came over and played.  Cole spent some time outside.  Then the call came.  Cole's blood counts were lower than expected, and they wanted him to come in for a transfusion.  We were initially told that we would only be in for a few hours and then would be able to go back home.  Of course Cole showed a fever once we were in the hospital, and we were stuck in room 3204 once again.  He had a good night on Monday with no fever, and we again were hopeful of a quick return home.  Unfortunately we were yet again thwarted by gods of fate.  We were then told that he had to be fever free for 48 hours before he could go home.

Cole was pretty upset, but he is a tough kid, and he had his awesome Auntie Julia to help him Cope.  To be honest; however, I am not sure if it is Auntie Julia that he loves so much or her I Phone.  Regardless we planned (I am sure that thwarted plans will be a continuous theme for some time to come) for a 6pm(ish) Wednesday departure.  Of course fate was not done playing with us for this adventure.  Auntie Laura called me at around 11 am and told me that Cole was going home in about an hour. 

While I was extremely happy for Cole, I was totally caught off guard.  The closest car seat was up in San Bruno.  Fortunately Grandma Rinde picked up a seat and they were able to get Cole home.  I cannot tell you how happy I am right now knowing that Cole, Logan, and Elisa are, right now, soundly sleeping in their beds at home....where they all belong.  Trials and tribulations aside, we ended up in the right spot.

This little adventure did make me realize that I have to get some ready gear together so that we will be prepared for any situations that may pop up.  I will be spending the next few days putting together a bag (that will, because I am a Baker, very quickly expand until we will have to rent a U-Haul truck) with a few changes of clothes, some toys/activities, important documents, etc (yes they will all be in Ziploc bags) that will be able to travel with Cole where ever he is, regardless of who he is with.  So that is my homework for the rest of the week.

Cole is set to go in for his next round of Chemotherapy on Friday 3/4, so please keep him in your thoughts.  But for now, please raise your glasses and toast Cole, video game designer. 

2-21-11 Room 3204 Redux

Well this sucks.  Cole has been progressing well over the last few days.  We even, in an abundance of caution, called the doctor yesterday.  She said that everything seemed normal.

This morning we went to his first blood draw appointment.  It took about 30 seconds and we were back on our way home.  The doctor said that they would call if the numbers were low, and if we had to come back in.  As I drove home I was confident that all was well.  Of course, Kaiser ultimately called and wanted him to come in for some more blood. 

Once we got to the hospital, Cole developed a fever.  With his low white blood cells so low, any fever is a great concern.  As a result, they decided to keep him overnight to give him some antibiotics and to monitor him.  So here we are again, Cole in a hospital bed in room 3204 (very nice of them to save it for us) and the rest of us scrambling to get the logistics together to have someone watching him in the hospital, taking care of Logan and making sure Elisa and I get to work tomorrow.  Fortunately Julia was coming to the house this evening anyway so that she could watch him tomorrow, so we just moved the whole operation south about 45 minutes.

I have to say that this really sucks.  This weekend was so nice.  I got to watch Cole’s personality come back, his energy come back, and we almost had a normal weekend.  Back to reality I guess.  When we were here last week, we heard a story of a kid who had gone through the entire Chemo process without ever having to come back into the hospital for unplanned visits.  While I understand that the doctor was saying that this kid was the only such case in her years of experience, I still had had dreams of Cole following that path.  5 days later, here we are.  This sucks.

I am hoping that this stay in the hospital will end tomorrow, and that Julia will be able to bring him home in the morning.  In the meantime, please raise your glass and toast Cole, the television producer. 

2-18-11 Today it was a good day

The last two days have been great, but bittersweet.  Cole came home on Wednesday evening but was very tired and did not interact very much.  Thursday was better, but he quickly tired and getting him to eat was a chore.  The doctors had at one point told me that Cole’s tumor was pushing on his stomach a little which makes him feel full even if he has not eaten very much.  Take that problem back about a month and it is understandable why he looks so skinny.  When I say skinny I mean that if he were older I would have thought that he had anorexia.  Cole’s diet is supposed to be high fat, high protein.  The problem with that kind of diet is that it is very filling in a normal situation.  In Cole’s situation, the premature fullness is magnified. 

My solution (and I am pretty sure it is a brilliant one) has been to have him eat a small, snack size, amount of food every single hour.  His “snacks” are as high in fat and protein as I can find.  He eats tuna with mayo on crackers, salami and cheese, and goldfish crackers.  I know what you are thinking, but goldfish crackers have a crazy amount of fat (omg, who knew?  omg, I just said omg.  omg I did it again.  omg, I am possessed and I can’t stop.).  We spent yesterday and today easing into this new routine.  I like it because it gives Cole a fairly consistent stream of energy, and it also gets him used to eating again in lower stress environments (not eating is such a foreign concept to me that I have trouble when my kids do not eat.  For me when I feel bad, I eat.  If eating makes me feel worse, I eat faster.).

For dinner tonight we had steak.  I have been dreading this meal since I first saw the dietary restrictions.  Many parents will not understand how traumatizing it was for me to tell Cole that we had to cook his steaks well done (for me as well as him, but this is not about me.  It is about Cole.  Please stay focused)  To my amazement and supreme happiness, Cole not only ate all the steak that Elisa put on his plate, he also ate all his green beans and his salad.  To top it all off, he even ate all his seconds of steak and asked for thirds.  He did not get through his thirds.

I have spent a great deal of time in the last two hours since dinner trying to figure out why we were so successful in getting him to eat.  It is, I am certain, a two part solution.  The first is that Elisa clearly put in some mommy magic into the cooking.  I am convinced that a mother can will her child into health given the right circumstances.  The second is that we cooked his steak in Baker BBQ sauce, and gave him some Baker BBQ sauce on the side.  I am not sure which was the primary factor in him eating (Elisa don’t read this……It was clearly the BBQ sauce that I had made, and for those interested we will soon have the BBQ sauce for sale on the donations page.  Stay tuned), but regardless he ate, and I am happy.

I am, in fact so happy that I think the California Bakers are going to be treated to some Daddy Waffles tomorrow morning for breakfast.  As you know, Daddy waffles are very different that Daddy pancakes. 

I am happy to report that for the first time since this whole thing started that I will go to sleep with a fair degree of confidence that even though the Balrog pulled us off the precipice, we are no longer falling helplessly.  We have begun to fight back.  For that reason please raise your glass and toast Cole the award winning author.   

2-16-11 The Eagle will soon be landing

As I sit here with my Subway sandwich (Thank you Sandi), I am giddy with excitement.  You see, Cole is coming home from the hospital in just a few hours.  You know that feeling you get on Christmas Eve?  The anticipation.  The excitement.  Well multiply that by about a million and that is how I am feeling right now.  I am having so much trouble focusing on work.  I just want to go home and see my son back at home. 

I know that I have to temper my expectations because we are just one small step into this whole process of recovery; however, for me it is a huge step.  No more IV bottles keeping my man down.  No more watching him sit all day in a tiny little room.  We have been in that hospital for two weeks, and it is time to go.

Cole’s spirits are high and he is already asking for some comfort food (Ribs and potatoes.  That’s my boy).  He will have some dietary restrictions which are basically super clean and very well cooked food (sorry son, no more runny gooey oozing pancakes).  For those of you who have so generously expressed an interest in cooking dinners for us, please get a hold of Julia.  She is organizing that aspect and has access to the calendar and the dietary rules.

Did I mention that Cole is coming home today?  I am so pumped up!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  (was that too many?  Too bad) !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sorry for not writing in my usual sophisticated (or is it sophomoric?) high literary style to which I know that you have grown accustomed, however, I am having enough trouble just sitting in a seat much less writing intelligently.

I think I am going to go run laps around my office or something, but for now please raise your glasses to Col Cole Baker, Pilot, USAF, Ret.

2-14-11 Day 4 of Chemo

Sorry for not writing last night, but I spent a wonderful evening with Elisa and Logan.  Elisa made a nice dinner and we sat down and I was almost able to pretend for just a few moments that Cole wasn’t in the hospital but was actually over at a friend’s house for dinner.  Of course that type of fantasy ends up causing more pain when the truth, as it always seems to do, comes crashing back in.  Still it was nice to sit with my wife for just a little while and catch my breath. 

To begin with, Happy Valentine’s Day.  I usually am not a big fan of this day because I always thought it insulting that I needed Hallmark to remind me to tell Elisa that I love her.  This Valentine’s Day is different.  In the midst of this trying time it is nice to have this day to remind me, not that I love Elisa but, how much I love her.  I know that she would disagree with me (probably more out of principal than anything, but that is another thing that I love about her), but I have been blessed for over 7 years with the opportunity to see that she is an amazingly strong woman, an amazing wife, and an unbelievable mother.  I hope that she knows how much I truly love her. 

OK, enough sappy stuff.  I guess I have a couple of days of updating to do, so here goes.   As I write this Cole is working his way through his 4^th day of Chemotherapy.  He seems to be handling it well so far.  They give him a substantial amount of anti-nausea medication prior to each treatment so that he will never (or at least be delayed in) associate the therapy with nausea.  Over the weekend Cole had developed a fever which has been very concerning and has caused even more stress for Elisa and I (if that is even possible any more).  With Chemotherapy Cole’s immune system is being suppressed and he is much more susceptible to getting sick.  As a result, the doctors told us that if his fever has not gone away by Wednesday, he will not be going home as planned.  As you can imagine we did not take this well. 

I am glad to report however, that through a combination of Tylenol, blood transfusion (is it a transfusion if we only add?  I think so.), and Elisa’s magic mommy vibes, Cole slept through all of last night without a fever and has been fever free all day so far.  He has not taken any more Tylenol today, so hopefully we are in the clear.  I know that he had a good temperature reading because Cole texted it to me.

That’s right, Cole can text.  No, I did not buy him a phone.  Chris set him up with a phone number through Cole’s gmail account.  You may have noticed a button on the blog that says “Call Me.”  If you call him, it will go straight to his voicemail and he can listen to it on the computer.  He can also send text messages from the computer to cell phones.  Amazing.

I want to send a general thank you to all of you who have helped thus far.  We have managed to raise over $1,000.00, my big chest deep freezer (that fortunately I just got for Christmas) is practically full of food, my dog has been walked more in the last two weeks that the previous two months, I have hot water pressure in my house again, Cole and Logan each have their own rooms and Cole’s has been painted, etc, etc.  I cannot even begin to express my gratitude for all the help, love, donations, and well wishes that have come pouring in.  We could not have even gotten this far without you, and we could not make it through this whole process without you. 

Please check back soon as we have some exciting fundraising events coming up in the near future.  Outback will be sponsoring a curbside takeaway dinner night.  I will let you know the date and how to purchase tickets for that.  Also we are working on a raffle that will likely include some combination of original artwork from Cole, some world famous homemade Baker BBQ sauce, and there is even the possibility that we might have some signed Giants stuff (by Giants I do mean the World Series Champion San Francisco Giants) to auction off.  Stay tuned, it will be exciting.

For now; however, please raise your glasses and toast Cole the acclaimed film director. 

2-12-11

Busy Day Today

Happy Saturday Night to all.  Cole had a very good day today.  Auntie Julia spent the night last night with him and he seemed to show very little in the way of problems with his first day of Chemo.  He had a slight fever which was treated with Tylenol, but was otherwise ok.  He made a video of his room with Julia's phone, and had a great time with her.  

Elisa was with him in the hospital for day 2 of Chemo.  Cole seemed to not have any side effects from the treatment other than the slight fever.  However, as the doctors do not seemed worried I guess it is not that big of a deal.  I am slowly starting to realize that as we move forward I will need to make a more conscious effort not to treat Cole like he is made of eggshells.  I have this overbearing desire to help him with everything (whether he needs it or not), and I know that I have to treat him as close to normal as possible. 

Chris took the overnight tonight and I was delighted to hear that Cole was feeling well enough to conspire with Chris to try and sneak down to the cafeteria for some pizza.  The nurses swooped in and captured them before they could complete the crime, and the two deviants had to settle for some pizza delivery.  Oh well, better luck next time.

I decided today that Logan needed a day of Logan fun.  His routines and schedules have been all screwed up during the last couple of weeks.  And while he loves the playroom at Kaiser Santa Clara, all the travel has been tough on him.  This morning I made Logan and Chris some pancakes using my special recipe that I have saved on my phone.  Then Logan, Chris and I went to Daddy and Me Soccer.  After that we acquired Auntie Julia and ended up at the Emeryville Market to get some Crispy Fry.

The Rindes really stepped it up today.  I had 8 Rindes and Rinde affiliates in my house today doing all manner of awesome things to get ready for Cole's triumphant return to San Miguel.  There was plumbing, cooking, painting, grading, shopping, and other various activities going on at the house.  Thank you for all of that.

I have never written, or even read, a blog before so I am not sure if I am supposed to be writing in a more coherent manner with transition sentences; however, my mind is very coherent and almost never uses transition sentences so I am not going to use them.  Please try and keep up.

This evening while Elisa was enjoying her newly much more pressurized shower, I took a field trip to the Outback in San Mateo to talk with Tana about fundraising.  I am happy to pre-announce a couple of fundraising events that will be taking place in the not too distant future.  The first will probably be a special curbside takeaway dinner.  Tickets will be sold, and the purchaser will be entitled to swing by the Outback and pick up an awesome dinner to go.  We might also be doing a raffle event at the Outback which will showcase some of Cole's art.  There is a rumor also that some of the world famous Baker BBQ sauce will be release to the public through this raffle.  Thank you to the Outback for your support.

I also want to thank those of you who have already sent in donations via the donations page on the top of this blog.  I don't have the words to express how much that means to me. 

Please stay tuned for upcoming fundraising events as well as further updates about our favorite little guy Cole, but for now please raise your glasses and toast Cole the Stanford Professor. 

2-11-11 A Quick Thank You

Happy Birthday to me.  Today I received a wonderful birthday present.  My son took the first step to winning this fight.  As I write this post, Cole is currently sleeping soundly and peacefully in his bed while the Chemotherapy attacks the tumor.  God Speed to you medicine and I thank you.

On the topic of thanks, I cannot possibly thank everyone who has helped so far, and I know that there are a great many more helpers out there waiting in the wings.  I do want to take a moment to offer up a great deal of thanks to my brother Chris.  Among so many other things, he has helped me with the technical aspects of getting this blog off the ground and getting it read (last time I looked we had readers all over America, in Canada, Alaska, Germany, UK).  In addition he created some pages which can be accessed from the tabs at the tops of the pages which discuss how you can help.  There are many different ways to help, and we will gladly accept any and all help we can get.  So far we have already been so blessed with so many well wishes, positive thoughts, and prayers.  For that I thank you.

I will probably post another entry tonight to give an update about Cole's day, but I just wanted to recognize Chris for his help in organizing the helpers.  For now, however, please raise your glasses and toast Cole the engineer.

2-10-11 The Storm Will Pass

The last two days have been pretty exciting, and all in good ways.  Well at least good within the context of why we are all here reading (and in my case writing) this blog.  As an aside, I hate using the word blog.  I feel like such a poser.

That aside, let's do an update on Cole.   De-De-De-Dede-de-de-de (sorry teletype machine broke)
I hope you all saw the video of Cole on the bike riding down the hill.  Needless to say (what a ridiculous expression that I can't stop using), I have been very happy with how he has progressed.  His walking has gotten so much better.  When he was first admitted to the hospital last week, he had already been unable to put any pressure on his leg for nearly one week.  To go from that to having a surgery to being able to walk under his own power all the way down to the cafeteria (which for anyone who has not been to Santa Clara Kaiser is about 4523234 miles) and back is amazing and makes me so very happy.

The feeling however, is bittersweet.  We have been pushing him to feel better and get better all the while knowing that tomorrow we are going to level him with Chemotherapy.   I just hope that he can forgive me for what we have to do to his body, and I hope that eventually he will understand that we are doing what must be done.  Please son understand that we are running a marathon here, and not a sprint.  The bad stuff now will pay off in the long run. 

So tomorrow it begins.  The ultimate battle of wills.  One one side we have one very nasty little bastard.  On the other side we have the collective will power of hundreds and maybe thousands of people, all of whom will direct all energies towards defeating this monster.  Cole rest assured that we will succeed and you will have to spend the next 15 years writing thank you cards to all of the people who have helped.  And you know what my son?  Your mother, your father, your brother, and your entire family will gladly help you.  We will have the greatest thank you card writing party in the history of the universe.  And that is all I have to say about that.

Now many of you have offered to help in a wide variety of ways.  The amount of love and support that we have received thus far is staggering and amazing and uplifting, and we would have crumbled long ago without it.  For that I thank you.  We still have many ways that people can help.  I promise that within the next day or two we will post via this blog, facebook, and emails the best ways to help and the best ways to organize all of that wonderful assistance so that we can maximize everyone's efforts in winning this fight. 

Please spread the word about Cole, please stay tuned and in the meantime please raise your glasses and toast Cole, the Doctor.

2-8-11

Ever since learning about Cole's cancer, I have had a pain in my chest.  However, once Elisa and I decided that on Wednesday we would tell Cole that he has a tumor and that he will have to have special medicine and will then get to go  home to rest for a few weeks, and then do it all over again I have had a horrible pain in my stomach.  Last night's ramble is a testamant to my inability to sleep due to the pain. 

The moment finally arrived and of course, Cole took it in stride.  Kids are truly amazing.  He asked a few questions and then told us that he probably would not be feeling good enough to go back to school after his five days of medicine.  He did not seem scared of confused.  I know that he has known for a while that there is something wrong and it is serious.  He is a smart kid and knows how to listen to adults who sometimes kind of forget he is in the room so they have conversations that might be better had outside.

He seemed to be in good spirits for most of the day, thanks in large part to Uncle Chris.  Uncle Chris and Cole were wheeling and dealing and negotiating everything.  For example, if Cole wanted to eat a meal in bed, he had to first walk all the way down the hall.  This approach by Chris was just what Cole needed because it pushed him, but still allowed him to be able to choose and control some aspects of his life. 

This brings me to the best part of my day from (now yesterday as this entry is being finished on 2-9).  COLE IS WALKING!!!!!!!!  I cannot express my joy at seeing him walk around last night.  It increased the amount of hope that I have, and every little bit certainly helps.

We will soon be entering the next phase of this whole ordeal: The treatment phase.  Cole will start Chemo on Friday, and the first cycle will last 5 days.  After that, as soon as he feels up to it, he will be allowed to go home for about three weeks before starting the next cycle of Chemo.  Big picture is 5 cycles of Chemo, 1 surgery, 1 cycle of Chemo, Stem Cell Transfusion, Radiation, then Maintenance Therapy. 

The amount of love and well wishes that have been sent Cole's way have been overwhelimingly wonderful.  I know that everyone wants to help, and right now the executive committe of Destroy the Damn Thing in Cole's Belly Inc., are working on a plan that will allow anybody to help in the various ways that they feel most comfortable and they ways in which they want to help.  We will be setting up some ways for people to help with physical things (dinners, help around the house, etc.), time (watching kids, etc), and money (if that is how some want to help).  Please be patient, and we will be sending out the word on how everyone can help.  Again the amount people who have expressed a desire to help, just to me much less Elisa or other members of my family, has been awe inspiring.  I thank you each for that. 

For now; however, please raise your glasses and make a toast to Cole, the Small Business Owner.

2-7-11 sleepless nights

I know that we are supposed to use our support structure, and don't get me wrong they are great, but it kills me that I have been home the last two nights while Cole is in the hospital.  I know I have to take care of me, but I miss my son.

Its not fucking fair that this is happening to him.  He is such a good boy.  He cares about others.  He loves school and learning.  He is polite to others.  Why?  Why? Why?

Fortunately I am going down tomorrow, and will be staying overnight and then will be there all day on Wednesday.  It is strange that I am supposed to go home to recharge my batteries so that I can be strong when I am with him, but it seems to be working the other way around.  When I see him, I am refreshed and know that I can take on the world, or at least the little bastard that is trying to take my baby from me.

This is not really an update.  I just can't sleep right now.  When I am awake and either working or doing stuff to help Cole (be it sitting with him, planning, logisticizing (yes that is a word), tasking others, etc) I feel much better than when I am alone in a dark room with only my thoughts which invariably turn to the worst case scenarios.

I also know that this is normal...no normal is the wrong word, nothing is normal in this screwed up situation.... I know that this is natural to feel this way and like Elisa said to me, if we can get through this first week of finding out about the Cancer, then it will get more manageable.  It just really really really sucks.

On a different train of thought (because that is how my mind works)....this is the first time I have written a blog.  It is a strange feeling because while I am writing it, I am doing so as if I am having a conversation; however, there is no other person who is immediately responding as would happen in a normal conversation.  I know people are reading it because blogs keep track of such things, but I am kind of just talking to the air.  I think that I understand Christian Slater's character much more now.

Enough about me, for now please raise your glasses and make a toast to Cole, the long haul truck driver.

2-7-11 Update

I forgot to mention that I set up an email account for Cole so that anyone who wants to send well wishes can send them to this email.  I will teach him how to access it and let him read them.  Please remember that these emails will go directly to Cole (5 1/2 years old) so please write accordingly.  Email address is aricson44@yahoo.com.

2-7-11

Yesterday was a pretty good day for Cole.  He was able to get his dressings and some of his tubes taken out.  His personality came back and he was in very good spirits.  In the afternoon Julia kicked me out of the hospital room to go take a nap, and when I got back I found out that he had sat up, and that he had been playing monopoly and monopoly deal with Elisa and Julia.  Seeing him vertical (or at least his top half vertical) made me very happy.

Also yesterday Uncle Chris showed up to help out.  He came armed with, I am sure, thousands of dollars of fun electronic equipment for Cole to play with including but not limited to a Nintendo Wii.  The arrival of Chris also brought about another happy little battle won.  Since his surgery on Friday, Cole had drunk about 15 apple juice boxes.  On Sunday he finally was able to eat.  The result of that apple juice and food apparently came quickly and unexpectedly.  Sorry Chris (but only kind of) that Elisa and I had taken Logan home for the night before that.

I finally said the word Cancer out loud today.  I did not really mean to, and I did not really plan to.  I definitely did not come to any sudden realization nor did I find some heretofore hidden reservoir of strength.  Someone and work just casually asked me if I watched the Super Bowl.  After saying no, he asked why, and I said that my son had been diagnosed with Cancer and that I had been at the hospital.  Strange how things that you stress over seem to resolve themselves in very anti-climactic ways.  As an interesting side note, the person I was speaking with just happens to have the name Angel.  Go figure.

Chris and Julia have been kind enough to take the duty for the next couple of days so that Elisa and I are free to spend time working, being with Logan, being with each other, etc.  Elisa is going to go down and visit Cole this afternoon, and I am going to be at home with Logan.  Trying to balance spending time with everyone is going to be difficult, and is very hard, but all we can do is do the best that we can.

Chris has been sending regular updates (I have no idea how people lived without text messaging and internet even though I am old enough to remember it).  Cole has been up and has been sitting in chairs, so that is good news.

I may post again later tonight, but for now please raise your glasses and toast Cole, the inventor of something even more awesome than the internet. 

2-5-11

2-5-11

Cole spent all day resting.  The back to back to back nature of his three tests really wore him out.  The doctors have all told us that he is recovering from the surgery well, but it has been tough on us (probably more so on Elisa.  If I were a mother, I would have crumbled long ago.  She amazes me every day) to see him just lie there.  I was hoping to get him upright in a chair, but he is still just too tired.  He still has not eaten, but we have been able to get enough fluids into his system that he is getting closer and closer to being sufficiently hydrated.  Unfortunately we had to put in a catheter to empty the bladder, which was not a pleasant experience for him.

Julia, Elisa and I ordered some Itialiano food that was very surprisingly awesome.  The chicken parmesan was very yummy.  I was happy and relieved to see Elisa take a second helping.  It is funny how she and I deal with stress differently.  When I am stressed out, I eat and don’t sleep.  Granted I always eat and rarely sleep, even during good times; however, when stressed it is even more so.  Elisa is the opposite.  She will get under enough blankets to create a furnace like atmosphere and go to sleep, but getting her to eat is very difficult.  I guess that is why she made me go take a nap today and I told her that if she didn’t eat I would punch her in the nose.

After Julia and Elisa left to go home with Logan, I started blabbing on and on about different inconsequential things from my day.  I think at first my babbling was grating on his nerves (as it does with many others), but he eventually started engaging in my conversation a little, so that was good.  I am hoping that tomorrow is a better day for him, and hopefully he will feel like playing with his mama a little bit.  He has always been a mama’s boy, and the sooner that he can reengage with her, the better.

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***This portion of the entry was written a couple of hours after all the rest.  **********

It appears that the morphine is wearing off because Cole is not so mushy any more.  He started to really talk a lot more.  He also moved his head back to the center position.  Ever since he came out of surgery yesterday, his head has been turned to the left.  Part of the procedure involved something with a very small incision in the right side of his neck (forgot to ask the surgeon what that part was, but hopefully I can remember tomorrow.)  so he had his head turned away from that side.  All day today he did not want to move it.  Not sure if it tightened up overnight, but he said it hurt.  He is definitely coming out of his morphine stupor.  Glad to have my kid back. 

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We spoke to Dr. Taggart today about the future and what to expect.  It was a very difficult meeting but there were a few rays of hope.  I still can’t make myself use the “C” word, but (thanks to my military training and many years working in restaurants), have been able to give the bastard inside my baby a whole bunch of other names.  I will spare you the exact names so as to not have to put a restricted age warning on this, but you get the idea.

I know that I have to eventually use the word, because as Dumbeldore tells us, fearing the name of evil only gives it more power.  I think that my hold up is that final piece of hope that rests in the fact that the 100% certain final diagnosis has not come in yet.  That being said; however, we are moving forward with the assumption that Dr. Taggart’s (the oncologist that is very nice, and we feel very comfortable with her.  The Midwest accent notwithstanding) suspicions are correct.

Please hope and pray, but for now please raise your glasses and toast Cole, the most excellent elementary school teacher.

Introduction

I have always dreamed of writing something that people would read.  Of course I never thought I would end up writing something like this.

For those of you who are just now finding out, and by way of introducing this…whatever it is, let me tell you about what is happening to Cole. 

Cole has what appears to be a stage 4 neuroblastoma(sp?) in his abdomen.  He had been sick for about 3 weeks and then had been complaining of hip pain for about one week.  When we took him to the doctor they ran tests for two days.  The tests were all inconclusive for either an infection or for a synovitus, which were the two diagnoses which were initially put forward.  Since they could not pin down anything for certain, they admitted him on Tuesday.  On Thursday they ran further tests which included a CT scan with contrast.  This test found the mass.

The oncologist believes it to be a neuroblasoma.  Today, Friday, Cole had an extremely long day of tests which included an MRI, a bone scan, and then a 3.5 hour surgery.  The purpose of the surgery was to take a biopsy (do you take a biopsy, or do you perform one?  I don't know) of the mass, install a permanent IV in his chest and to pull a sample (think they called it a bone marrow aspiration) from his hip. 

Fortunately the MRI and bone scan showed that the mass (can't use the "C" word yet.  Just not ready) has not spread to the spine or to any other bones in the body.  That was the first piece of good news that I have heard since this whole thing started.  We won't have the results from the surgery for a couple of days.

Cole, considering all things, made it through the day and as of 9:40 this evening is resting comfortably in his bed. 

The primary purpose of this blog is to have one central location for updates regarding Cole.  Between phone calls, text messages, email, facebook, visits, etc., I decided that there needs to be one place that everyone who cares about Cole can go to get information.

I am not sure how else I will use this blog.  I may, at times, use it to express whatever I am feeling as a way just to get it out.  I would like to apologize in advance for any crude or crass remarks that I may make.  I do not plan to edit this blog for content or appropriateness.  On that note, please be aware that some of the medical information, and most likely many of my rants will not be appropriate for children of certain ages.  I ask that parents take care with how much they allow their kids to read this.

With all that being said, I would like to end this introduction with a few special thank yous.  I never really thought about how much family I have, and how many friends I have until this week.  I apologize if I do not name some people specifically but everyone has been so caring and helpful that I can't name everyone.

I want to first and foremost thank Julia.  Without her dropping everything at work and being my rock, I would have crumbled.

Secondly I want to thank the Rinde family.  They have always been there for me, and without question or hesitation, cancelled their vacation plans just to be there for us.

Finally I want to thank the Bakers for their support and help.  I know that it is excruciating to be 1000 miles away but I know you are there.  More importantly Cole knows you are there.  I love you guys.

I know that everyone wants to help, and I am sure that there will be ample opportunities for each of you.  For right now, I ask that you give me a little time to get my head on straight so that I can figure out what we might need. 

For those who want to come visit Cole, please email or call me before coming by so that I can manage the number of people at any one time.  Cole is going through a lot and I don't want to smother him. 

For anything else, please feel free to email me at aric44@gmail.com.  I will let everyone know how they can best help Cole kick the shit out of this damn thing.

For now, please raise your glass and toast Cole, the future President of the United States of America.