3-28-11 Bear Down

Cole is back in Chemo this weekend.  He went in on Wednesday night and Chemo started on Thursday.  He had a little problem with nausea on Thursday, but since then he has been doing very well.  He does not have a monster appetite, but he has eaten some.  He even ate some of the leftover taco meat that I had brought for me to eat for dinner.  His spirits are high, and he is blissfully unaware that Uncle Chris and his cousins Jackson and Sophia are going to be visiting all next week, and will be in town on Sunday.  It is a secret so don’t tell him.  When he comes home from the hospital, they will be waiting for him. 

We got the test results back from his MIBG, MRI, CT, and Bone Marrow tests.  I was initially told that the tests showed no disease, and that the tumor was gone.  While looking back there was an obvious miscommunication, at the time I thought that we had been given a miracle.  Unfortunately, but now obviously, that was not the case.  That being said; however, the tests were very encouraging.  The tumor itself has decreased from 6X6 (cm?, m?, km?, fathoms?) to 4X4.  Also the MIBG tests showed no disease in the bone marrow.  The bone marrow aspiration test showed no disease at the more than molecular level (is there a word for that?  If not, I will dub the term supramolceluar).  At the molecular level, there was still a very small (test result used the word rare) number of disease cells.  All of this together means that Cole’s body is responding to Chemo exactly how we want it to.  Hopefully we will stay on this path, and beat this bastard.

We have been doing well at home, and have settled into a routine where Cole’s treatment is just part of the routine.  Logan is having fun in school, and recently made the best rainbow in his class.  I know it is early but he definitely shows promise as a rainbow engineer.  There is good money in that field…not everybody knows that.

We have used up all of the gift card money that my work gave me (thank you all for that by the way), but fortunately so many of you have been so generous with donations and dinners, and other forms of help that we are still doing ok.  The goal is to get to the summer, and then go from there.

For all of those who are interested, Julia is hosting a happy hour birthday party for her/fundraiser for Cole on Tuesday at a bar in SF.  We have a flyer going around, and if you bring in the flyer a portion of your tab will go towards the Cole fund.  There will also be a raffle of some of the most awesome raffle items I have seen in my long and distinguished career thus far.  Julia posted the flyer on her facebook, and I will post on mine.  If you are not on facebook, send Julia or me an email and we can get one to you. 

Cole has asked me to re-post his birthday wish list.  Again I caution you that this list has neither been approved nor edited by Mom, but here it is:

Ipad, Ipod touch, Iphone, ITunes credit
Spongebob Stuff (slippers)
Art supplies (paper, crayons, etc)
Jeans
T-Shirts
Sneakers
Crazy 8 Socks
Baseball Caps
Knit Caps
Books (Junie B Jones, Hardy Boys/Nancy Drew, Phineas and Ferb, etc.) that are at a 1^st or 2^nd grade reading level
Games (Guess Who, any strategy games)
Stuffed animals
Bag of balloons
Flip flops
New bedding (Spongebob, Cars, Mickey)
Amazon.com credit

Please review the list, but for now please raise your glasses and toast Cole the Zombie Farm super player.

3-22-11

Cole has the madness….March Madness.  For every game that is on, he paces back and forth screaming for his team to win.  He puts up signs and when they win, he dances around like a maniac.  His ultimate chosen team this year is San Diego State.  They are still in it, but have a tough contest against UConn.  Cole is winning the pool after the first two rounds.  He picked both the

Morehead St.

and Richmond upsets and the Richmond victory over

Morehead St

.

On to updates.  Today Cole had a minor procedure called a bone marrow aspiration.  Basically the doctor made two very small cuts on the backs of his hips and pulled some bone marrow out to test it.  Tomorrow (although now technically today because it is well after midnight when I am writing this) we are going back to Kaiser for an MRI, a CT Scan, and an MIBG test.  Cole will get sedated for the MRI.  Hopefully these tests will show that the tumor has decided to leave completely and that Cole will be back in school on Monday.  OK maybe it is a pipe dream, but it is my pipe dream so leave me alone.

Tomorrow night Cole will head back to be admitted for Chemo Round 3.  Dr. Wong said that this round of Chemo will have much more severe side effects, so Cole needs your thoughts and prayers even more than before.

For now however, please raise your glasses and toast Cole, the biologist.

3-17-11 Should-Have-Been-Birthday

Today Cole and I went to UCSF to do the stem cell collection.  With the fact that we had to be up in the City by 7am, and due to my anxiety about the upcoming process, I had a great deal of trouble sleeping.  I remember seeing the clock run the down the back side of 1am and I woke up at 4am.  Thank you Peet’s for getting me going this morning.  I would not have made it without you.

We made it to UCSF in time and met a wonderfully quirky nurse who got Cole ready for the installation of the new IV line in his leg.  Cole was a little scared that it was going to hurt going in despite the fact that they kept telling him that it would not.  I think Cole has hit that point where he understands that adults who speak to him like a child will always lie to him about how much it will hurt.  In this case however, it really did not seem to hurt.  They put some numbing cream on his legs and then injected some more numbing medicine, and then gave him an anti-anxiety relaxing medicine.  Cole, the nurses, and I talked about Ipods while the doctor did his business.  The tube they put in his leg was, to me at least, a ridiculously long tube given Cole’s small leg.  I decided to not speak up and let doctor go ahead and install the line.  I figured there was no need to embarrass the doctor with my clearly superior medical knowledge.  I know that you are probably thinking that the doctor has been to medical school and has been doing this for a while.  But for all I know he spent medical school researching pancake recipes.  After it was all said and done, I had to accept, albeit grudgingly, that the doctor did an outstanding job and Cole never made his pain face.

We then headed down one floor to the collection room.  As we walked out the door, one of the nurses had to run back to get an elevator key.  I figured this was to activate the employee elevator.  I was wrong, and the reality was way cooler than my imagination (which is something that has very rarely happened in my life).  The key gave us priority to the elevators.  Now when I say priority, I don’t mean that the elevator comes to us first.  This super awesome magic key (totally have to get one) sends the closest elevator directly to you, and then tells all the other occupants that they have to immediately get out and let us do our business.  AWESOME!!!!!  Now I know what it feels like to be royalty.

****Interlude******

Today is the day that should have been Cole’s birthday.  Cole and I decided that he should celebrate his should have been birthday as well as his real birthday.

*****************

The collection was, as most procedures that give me a great deal of advance anxiety, pretty unremarkable.  They hooked some tubes up to his new IV line and cycled his blood for a few hours.  Cole played Ipad the entire time (have you noticed a continuing pattern with Cole and Ipad and getting through tough times?  Thank Mr. Jobs), and before I knew it, we were all done.  They came in and took out the IV line.  The only part that hurt was when the doctor intern (or resident, not sure but I know that she was about 12 years old….Geez I am old) had to put a lot of pressure to stop the bleeding.  That ten minutes aside, Cole had no problems and we were able to come home this evening.  The goal was to collect 15M cells.  If they were not able to get that many today, we would have had to stay overnight and do another collection tomorrow.  My man said, “You want 15M from me.  Here is 36M, keep the change.”  OK maybe he did not say it out loud, but I know he was thinking it. 

This evening Cole was introduced to the show Wipeout.  He found it super funny.  What we found funny was that he was sneeringly making fun of the contestants, saying that he could do the crazy activities so why couldn’t they.  It was awesome.

Time for some quick shout outs.  Please forgive me if I do not mention anyone specifically, but the amount of help has been so overwhelming and abundant that I could not possibly begin to name you all.  You know who you are, and please understand that I thank you from the bottom of my heart.  I would like to throw out a special thank you to the San Mateo Rotary Club for their generosity.  In addition I would like to thank the schools (Cole’s, Elisa’s, and others) who stepped up and helped out Cole. 

Many of you have asked how you can help.  As many of you know, you can check out the dinner page as well as the donation page as possible ways to help.  In addition, we ask that anyone who is able to give blood, please do so.  Cole has had multiple transfusions, and will likely have many more.  Now it is not possible to give blood directly to Cole, but if you can add to the general blood bank, it will ultimately help Cole.

Tomorrow we are heading down to Grandma and Grandpa’s house for some Corned Beef and Cabbage (for me.  Cole, Logan, and Elisa will eat Irish Bread).  For now; however, I ask you to raise your glasses and toast Cole, NCAA Champion winning Head Coach.

New Blog Post for Cole Baker

http://www.aboutcole.blogspot.com

 

 

3-16-11 64 means 64

I must apologize for my extended absence, but I have learned something interesting.  Artists always seem to be going through some emotional crisis when they do their best work.  While I am not so daft as to truly see myself as an artist, I am beginning to understand that it is, not easier, but more productive to be able to tap into a very strong emotion when trying to produce something creative. 

With that as a (I must say so myself) wonderful reason (being lazy just does not sound as awesome) for my failure to update for the last few days, I am happy to report that the last few days have been amazingly uninteresting, which is most certainly a good thing.  We had a good visit from Grandma Kathy last week.  She came in and allowed Elisa and I to work all week, and thus save up some sick days/pto days.  On Saturday, I took Logan to soccer, and the family pretty much just played all weekend.  Cole and I took the cars to car washes and had little mini walking adventures while we waited for them to get cleaned.  

Cole has been feeling great, and acting as sassy as ever.  His counts have looked pretty good, although his white blood cell counts were low on Monday.  On Monday we had to increase the amount of medicine that Cole gets in his daily shot.  I was really worried that he was going to freak out, but for the first time he did not cry at all.  This increase happens for the three days preceding his visit to UCSF for the stem cell collection.

Today Cole and I are going to the clinic to check his counts, get his dressing changed, and make sure that he is ready for the stem cell collection tomorrow.  Speaking of the stem cell collection, Cole and I have to be at UCSF at 7am tomorrow to begin the process of collection.  They have to install a new IV in his leg.  Hopefully they can get what they need on Thursday so that we don’t have to stay overnight.

Yesterday I also told Cole about the bone marrow aspiration procedure coming up next Tuesday.  He was pretty scared at first, but due to my rapist (sp?) like wit, he quickly got over it.

Today Cole is filling out his NCAA pool.  He started off using a modified wife/kid/geo system whereby whichever school names sounds more interesting gets the pick, but also, as a tiebreaker, the school closest to him gets the nod.  He has progressed into a mathematical probability system that seems to involve picking all favorites. 

Anyone who wants to go against Cole in the pool can email their picks to me at aric44@gmail.com, and deposit $10.00 into paypal.  The winner will get half of the proceeds and the Cole fund will get the other half.  I will post his picks later this afternoon.

In the meantime, please raise your glasses and toast Cole, the revolutionary leader who returned sanity to March Madness by outlawing the play-in games (“play in games”…it’s called the season folks)    

3-9-11

Sorry that I have not written in a while, but I just have not had the energy. 

Grandma Kathy came out for the week to hang with Cole.  It is nice because this way Elisa and I can work all week and save a few sick/pto days for the future.  Today is Wednesday, which is usually my day to stay with Cole, and I find the very idea of being at work intolerable.  I am just wandering around the office in a fog, and all I can think about is how I feel like I am missing out on precious time that should be spent with Cole.  Don’t get me wrong, I love that my mom came out to help us out, and Cole loves hanging with Grandma.  I just miss my time with him.

That aside, let’s do some updating.  Cole was discharged from round 2 of Chemo on Monday.  Thus far he has been doing extremely well, and has only had a couple of instances of nausea/vomiting.  His hair is mostly gone, and the hair that remains is a very light color, almost translucent, which sits atop his head like a strange clear helmet.  Like any 6 year old boy, he is indifferent to how he looks and acts like a regular 6 year old kid.  I know that he is very smart, and knows more than I sometimes choose to believe which makes his positive attitude all the more uplifting.

I talked to the medical staff yesterday and learned that the next rounds of chemo are less than 5 days (4 for each of round three and five, and 3 for each of round four and six).  They also gave the possibility that some of the future Chemo can be done at the outpatient clinic, which would be awesome. 

I want to thank everyone out there who has been so generous in their support  for Cole, and for our family.  The financial donations that have been given have been a true blessing, the dinners prepared have helped us maintain some sanity, and the general love and support has been overwhelming.  I thank you all.  We are only in the beginnings of this fight, and I am certain that our victory of the bastard will come as a result not from me nor from Elisa alone but from all of you.  Keep the well wishes coming, and I thank all of you who have helped, and I thank all of you in advance for the help that I am certain will come our way as we proceed through the process of getting rid of the monster in my baby.

For now; however, please raise your glasses and toast Cole Supreme Court Justice. 

3-6-11 Sleeping Boy

You it's funny, or strange, or...well I don't know what it is, but when Cole is awake and acting like a normal 6 year old, I can almost forget about what is going on even when we are in the hospital room (which we are now).  When he is sleeping; however, that is when I see him as a kid with an illness.  I am not sure if it is because he is not moving, or because he has no expression on his face, but I know that as I sit here writing this, I am looking at my son lying there in that bed and it breaks my heart.  I am pretty good about being strong most of the time, but not when I am alone and staring that that boy knowing that he is fighting for his life, and there is nothing I can do but be supportive.  I wish I could do more, but I don't know what else to do.

Not really in the mood to write anymore tonight, so please raise your glass and toast Cole member of AARP.

3-4-11 Get Ready for 4/1/11

Cole has asked me to let all of you know some things that he is wishing that he will get for his birthday on 4/1 (yes he was born on April Fool's Day, and yes it is very fitting for such a knucklehead), so here it is...unedited and very much not approved, by and large, by Elisa:

Cole’s Birthday Idea List:
Ipad, Ipod, Iphone, ITunes credit
Spongebob Stuff (slippers)
Art supplies (paper, crayons, etc)
Jeans
T-Shirts
Sneakers
Crazy 8 Socks
Baseball Caps
Knit Caps
Books (Junie B Jones, Hardy Boys/Nancy Drew, Phineas and Ferb, etc.) that are at a 1st or 2nd grade reading level
Games (Guess Who, any strategy games, Pictureka board game[not card came])
Leapster 2 games
Stuffed animals
Bag of balloons
Flip flops
New bedding (Spongebob, Cars, Mickey)
Amazon.com credit

Tonight I have the overnight duty with the big man, and will also be here all day tomorrow.  Julia will probably take the overnight tomorrow night, and we are still waiting on Prez. Obama to see if he will be taking Sat. night.

I may have a further post later, but Cole wanted me to get this list out asap.  But for now, please raise your glass and toast Cole Tap Zoo champion of the whole world.

3-2-11 Happy Birthday

We must first begin this evening with a happy birthday wish to Elisa.  Her strength has kept this family together on more than one occasion, and I don't just mean with respect to Cole's cancer.  I can never tell her that I love her enough times to fully express my feelings for her, so all I can hope for is that everyone in the world reads this blog so that everyone in the world knows that she is my whole life.  I love you Elisa.

Last night Cole and Julia picked up an ice cream cake from Cold Stone Creamery, and we lit some candles and had a little birthday party.  One of the presents that Cole got for Elisa was a little magnetic frame.  What is so awesome about this frame is that when Cole and I went to UCSF for the stem cell consult, he was allowed to pick out a toy from the big toy box.  He picked this frame out for the sole purpose of giving it to Elisa for her birthday.  If you don't know Cole personally, that is who he is.  That is how he rolls.

Today Cole's other best buddy Chris (Noah being the other) from school came over to play.  They had a great time, and while playing, Cole's loose tooth came out.  Sometimes I forget during the midst of all this medical stuff that Cole is still a kid growing up.  I have to work to keep that in mind. 

Cole and Elisa went down to the hospital tonight so that they can get Cole pre-hydrated before starting Chemo tomorrow.  Wish him luck and keep him in your thoughts.  For now please raise your glass and toast Cole, the graphic designer.

3-1-11 Seriously?

Ok, to sum up, here is the status of the universe at my house.  Besides Cole and all his stuff (which apparently is not enough for us.  I mean I hate to be able to sit down and rest anyway), my dryer broke the other day (shout out to Jaci for the use of her dryer), the Toureg needs brake pads and rotors, and then to top it all off, Logan has come down with a fever.  Super

So today I find myself at home (unscheduled day for me) trying to keep Logan at one side of the house while Julia keeps Cole on the other side.  As I write this, Logan and I are watching Elmo teach us how to run while Julia is outside riding bikes with Cole (Julia has not been on a bike in a long time.  Too funny to watch)

And, because that is not quite enough, they moved Cole's Chemo schedule up a day.  Not a big deal, but the change in logistics is kind of a pain in the butt.  The reason they moved him up one day (start Thursday instead of Friday) is because they want to better time the Chemo with the stem cell collection (they use the word harvest, but I don't like that word) that is set for 3/17.

All in all, a heightened stress week here at the house.  Fortunately I was able to relieve some of it last night courtesy of a glass of Scotch (shout out to Ms. Koss).  Also, Elisa has a crazy week at work with report cards coming up, field trip, state writing test, etc.  Good times.

Today is March 1st.  I say welcome to March, and good riddance to February.  What a shitty month.  May have to cancel February next year.  For all of you who have birthdays in February, please make arrangements now to move them to another month. 

For now; however, please raise your glasses and toast Cole, winner of the Tour de France.