Sit Rep #22 - Thanksgiving

Hello Friends and Family,

It has been too long since there has been an update to the blog and we apologize for keeping you all in the dark for so long.  Here on Thanksgiving day we have much to be thankful for.  Even though our immediate families cannot spend Thanksgiving together due to colds and flus, etc which dad cannot risk catching, we will be together in spirit. 

It has been a long road since the last update.  Mom and Dad lived in San Jose over the summer to meet the required distance from Stanford.  This distance was challenging for the family but we were so grateful to have Stanford close by unlike some families we had met who had traveled across the country for treatment.  There were daily then weekly visits to the hospital.  There were ups and downs with infections and minor complications.  Nothing that the doctors were not able to jump on right away and tackle.  Its been a roller coaster ride and Mom and Dad were at the end of their rope come August.  Dad had one last test of his patience and then they released him back to Santa Cruz to be home.  Being back home has made all the difference in morale around here.  Dad has made steady progress to recovery.

The last scans which were completed a few weeks ago show that the cancer is not showing and the stem cells are winning the battle of taking over Dads system.  They are slowing taking him off his medications of prednizone and the immuno suppressant drugs that he has been on for so long.  These reductions are the next step in recovery.  Dad needs to take over where these drugs were helping him out.

Its still a long road to recovery.  Dad's body is weak and he is tired but his spirit is not broken.  He will continue to fight for the future that he deserves. To celebrate more wedding anniversaries (44 aready!) and birthdays, admire Matt in his successes, watch grandchildren grow, and the seasons pass.

We are all thankful for Dad on this day for the fight he has given and continues.  We are thankful for Mom and her perseverance and determination in caring for Dad along this journey.  We are thankful for our families and the support and love received from all.

ENJOY YOUR THANKSGIVING EVERYONE!!! 

AND DON'T TAKE THAT WHICH YOU ARE THANKFUL FOR GRANTED

Love, Heather

Go Stem Cells Go - Sit Rep 21#

I'll start this off with a goodbye.  Not goodbye for good but goodbye for now.  Dad went off to Stanford for his stem cell transplant.  Should that be capitalized?  Well, we do want it to work...STEM CELL TRANSPLANT.

The kids had a few gifts to get dad through.  Savannah is sure her Love Froggy will do the trick.  Nate, well, he's a baseball man so a ball will do.  Hubba Hubba!



Long story really short.  Dad checked in.  They tested anything and everything that moves.  He earned one of those rubber wrist band things for lapping the hospital floor more times than anyone else.  I'm pretty sure I saw him elbow an old lady for it and yell URAH as he was making the last turn.  Good times while waiting for Aunt Chrissy's stem cells.


Speaking of which.  Aunt Chrissy got into town to donate her stem cells.  Dad's in the hospital with a life threatening disease.  Before we knew it he was hit with that huge KIMO that knocks out your ENTIRE system.  So, we decided...PARTY!

Our Santa Cruz Family

GO STEM CELLS GO!!!

Yes we sang.  "For She's a Jolly Good Fellow"

Man, that all seems so long ago.  

Silence fell after all of that.

We waited.  

Praying for dad to make it through those rough days.  "Just waiting for the shoe to drop."  Dad would say.  It was rough but honestly the shoe never really dropped.  It might of felt like it was dropped some days but someone caught it before it hit the floor.  Usually, an awesome Stanford nurse.  The kids couldn't come into dads room for weeks but he had a reminder.

I never I thought I'd be so grateful that a baseball is a sphere. 

As the last few weeks have gone by there have been ups and downs and sideways.  Mom has been holding on really well.  She has to be over in the Stanford Hospital area for the duration.  We have been trying to all go up there to visit their apartment.  My 5 month old needs her Avo as much as Avo needs her 5 month old.  Now we are just waiting to see if the stem cells....

Only a good boy can't spell dame.

They have released dad from the hospital.  So, as we speak mom and dad are sitting in the apartment.  Making trips to the hospital.  A random blood transfusion one day.  Kidneys acting crazy the next.  Low this.  High that.  Pass the pills.  Mom learning how to give an IV!  Yes, she needs your prayers.  I would say dad is balancing on a tightrope, his body trying to find it's equilibrium.  Walking toward a test that will hopefully show Aunt Chrissy's stem cells taking over.  We want that to be over 30%.  Keep in mind this transplant cures 60% of patients with AITL.  This is the plan according to Nate.

Sit Rep #20

Well, here is the deal.  I say deal because plan sounds like we know it will all roll out a certain way.  When you get dealt cards, you play them the best you can.

Yes, my husband has a file of photos for his online poker intimidation. **eyeroll**
             

               FAST EDDIE IS ONCE AGAIN CANCER FREE!

This time they are jumping straight into the stem cell transplant with his sisters stem cells.  Doctors said this was the best PET Scan they have seen for him.  Over the last few months they have been changing his Kimo to find the right mix.  This last one, worked. As all of you have been following along this aggressive cancer is only hiding.  We PLAN on chasing it out of the bushes.  PULL! 

"Bird Shooting" - Okay I felt bad about any other bird getting a shot.

 

What next?

My aunt will be traveling up from southern California for a round of NEUPOGEN SHOTS and a STEM CELL HARVEST.  At that same time dad will be given the highest dose of Kimo yet.  ALL his immunities will be taken away.  They actually sing you Happy Birthday because ALL of your cells are new.  Risky? YEP.  Our only chance to beat this thing? YEP.  This is all set to start on the 19th of April.  

Since dad is using a donors stem cells the hospital stay and recovery are much harder.  They have to do a daily test that checks whether or not his sisters immunities are taking over.  Which is what we want.  At the 90 day point they do another PET Scan to see if the cancer is still in remission.  They will have to be up at Stanford until roughly the 8th of August.  My dads blood type and DNA will change to match his sisters.  CRAZY RIGHT!  We will keep you updated more often in the coming weeks.

We heard some interesting news up at Stanford yesterday during the preliminaries.  A General also had AITL, the SAME chemo worked on him and he had a stem cell transplant last year.  Last year?  He is still around and cancer free one year later!  Hope I tell ya.  It feels good.  The only thing they have ever told us that MIGHT be linked to AITL is being in Vietnam.  Seems that one link pops up quite a bit.  We wonder if that General was in Vietnam too. 

Okay Folks.  This is it.  We are going BACK to Disneyland in one week.  Dad will be hanging on your prayers and comments.  I will be manning the blog station.

Sit Rep #19

Hello All!  We have been sitting around here "watch'in paint dry" as dad claimed the last few months would be.  No, not really.  The idea of having time to watch paint dry sounds luxurious.  Here is an update of the current situation.

1.  Doctors changed dads KIMO a few times.  This current one is every three weeks and seems to be working.  The cancer symptoms are not rearing their ugly heads at the moment.

2.  There will be a CT Scan on the 19th of March to see if the cancer is knocked BACK out.

3. Dad is holding up well.  His hair is coming back in slowly.  Kinda looks like a baby penguin.

 We are not sure what is up with that but don't worry the eyebrows were the first to come back and they look like their not gonna leave again without a fight.

4.  Because the cancer came back so quickly in December doctors have decided that they need to do a stem cell transplant with a donor, not dads yucky stem cells that were harvested a few months ago.  Yes, I just called dads stem cells "yucky" and that might be the technical term.

SOOOO.....

That left us these past two months lookin' around for someones stem cells that are purty.  

LET'S PLAY THE MATCH GAME!!

 
There are donor databases to find matches.  This process takes months and even then they may not find someone that is a match. Your best stem cell match can be found in your siblings. Turns out Fast Eddie has a couple of sisters that have endured his shenanigans for over 6 decades. Now we had to ask for their ACTUAL DNA to prove their devotion.  Sadly my Aunt Debbie that lives 'round the bend was NOT a match.  

Pretty much the feeling around here

SOOOO....
Dads youngest sister Aunt Chrissy.  She lives in San Clemente and cares for my dads aging parents.  Really she already devotes her life to helping them when not working.  Now we want your blood lady.  Well, we have been waiting weeks for the results.  She passed the first tests and Stanford says "looks good".  Today we found out.  She is a 

"PERFECT MATCH"

Stanford is going to give us the schedule for the stem cell transplant after dad goes through another round of Kimo.  We should know more by the first of April.  Now we go back to watch'in paint dry.  

Situation Report #18

We promised to update you today with the news.  The good, the bad and the ugly.  Remember when Voldemort seemed powerless forever but still had a spark or Arnie came back from the Terminator with only a twitch of the finger left at the end of the movie.  Heck he rose up in a couple more movies and even had the energy to be the Govenator...

YES, I am finding the way to tell you something even many of the doctors at Stanford didn't believe.  Dads cancer was in remission the first week of December and then by the end of the month was back stronger than ever.  We have been just sitting around for the last few days trying to wrap our minds around this news and of course waiting for Oncology office hours to open today.

 A weekend of all of us roaming around the house feeling down and not knowing what the doctors will say come Monday.  Will they tell us, "Sorry, go home my friends?"  Yesterday we sat watching the Broncos/ Stellers game, trying to get our minds away from our recent news. The family team wasn't looking to win.  Of course when the game went into overtime the inevitable "Tebow God" conversation started.

Dad: "Well, it looks like God watched over Tebow again."
Me: "Dad.  I surely hope that GOD has way better things to do than rig football games."
Mom: "Maybe God has chosen to show himself this way."
Me: "Whatever." **eye roll**
Dad: "You never know I guess."

Moments later the OT starts.  Tebow throws the ball to Taylor and he goes.....ALL...THE...WAY!!  80 YARDS for the touchdown.  Mom jumps out of her chair and runs over to dad.  He is yelling "WE WON WE WON".  They are hugging, everyone is out of their seats high fiving.  Minutes later dad is on the phone with Mathew doing the traditional play by play.  Everyone is all smiles in that moment.  A moment we all needed and prayed for.  Maybe God does rig a game or two.  What's the harm.

ONCOLOGY IS OPEN TODAY AND WE HAVE A NEW PLAN B

So, as we speak dad is BACK in the KIMO chair.  He is going to have two rounds of kimo but a new regime.  Gemcitabine and Oxaliplatin.  Say that three times fast.  We are not sure yet if the next and final round will be in two weeks or three weeks.  What we do know is AS SOON AS that round is over dad will go straight to the STEM CELL TRANSPLANT at Stanford using those cells that were harvested a few weeks ago.  The new piece is the possibility of  a   Mini Allogeneic Stem Cell Transplant  after the first transplant.  I guess the idea is to "tie him over" until he can get matched with a stem cell donor.

Are you confused yet?  We are just along for the ride ourselves.  Welcome to the boat, grab a paddle.


We have dug out a positive a doctor said today.  Upside, dads cells are fast growing.  Hence the cancer in a few weeks thing BUT also they can get the good guys to grow fast too.  He responded REALLY well to the first 6 rounds of kimo.  Now, we hit it again and then be ready to transplant immediately.


Chin up folks.  Chin up.

Situation Report #17

So it's exactly one month since we last posted to the blog and there is a lot to report. This reminds me that my new years resolution should be to update the blog more often...oh well, I have never been able to stick with a resolution so why start now.

As per the last update you are all expecting that dad is in the hospital beginning his stem cell transplant today. Unfortunately there has been a setback in the time line. To bring you all up to speed, dad caught an infection during his week of stem cell production which landed him in the hospital for a week.

1.  The good news is that they were able to proceed with the stem cell collection during this time period. Oh and dad ROCKED it.  The nurses said they were some of the best they have ever seen.  Not sure what that means but dad is proud.

2.  The bad news is that dad was in the hospital during the Christmas holiday and was delayed in meeting his brand new granddaughter-Mary Josephine. That was a tough one for everyone. Analicia was able to bring Josie up to Stanford for them to meet for the first time.

Grand child number 6 - Mary Josephine

Fortunately he was released on December 28th and we were able to celebrate our belated Christmas with our traditional feast.

Eat your heart out...Polski Style!

So dad was released with the assumption that he would return and proceed with the plan as scheduled. The week out of the hospital he recovered slowly. A persistent rash and chills resurfaced.  It has been concerning since these are the symptoms that dad started with on this AITL journey. Even with this everyone was been looking forward to today and starting this next chapter of recovery.  THE STEM CELL TRANSPLANT!

So Mom and Dad packed up for their month+ stay up at Stanford and headed to Palo Alto on Wednesday(1/4). To their chagrin, the doctors sent dad home with the same concerns over his rash symptoms. There are two schools of thought:

1.  The first school of thought, that dads cancer has presented itself again even though he was in full remission only one month ago.

2.  The second, that the rash continues to be a reaction to antibiotics dad was taking while fighting his infection.

We like number 2.  Doctors say number 1 is RARE.  Let us be WELL DONE I say.  This is going to be resolved by obtaining another CT scan and results of the biopsy of his rash. If the results come back negative dad will proceed with the stem cell transplant as planned. If not, the doctors will put their heads together for plan B.

To sum it all up:

AHHHHHHHHHHHH!

This has been a blow to dad and mom's spirits but we remain hopeful that this slow and steady path leads us to dads full recovery.  We will update you AS SOON AS WE FIND OUT!  That should be by this Monday evening, the latest.

Wishing you all a healthy and happy 2012,
Heather

Situation Report #16

WE'RE BACCCCKKKKK!

Did ya miss us?  We missed you.  We have started hearing from people, "No news is good news...right?"  Then, when Dave the owner of Mission Hill Creamery stopped by today with three delicious pints of his organic ice cream, to check in, I thought I'd better get people caught up.  Dad does love the ice cream and the thought that if we lay low he might bring more just to check in, did cross our minds.  Alas, that would not be becoming. SO...

SORRRRRY!  WE ARE INDEED STILL HERE.

There is so much going on in the coming months, you will tire of us.   Here is a "prelim" to the show starting at the end of this week.  Yes, this is a drama.  Who are we kidding, it might end up a dramedy.  This family can't help it.  

Dad finished his 6th and final round of KIMO!  It was a punch, but no where near a knock out.  If there is one thing that I have personally gained from this situation.  It's this. 

I used to think CHEMOTHERAPY just looked like this:

He who should not be named

  Come on admit it.  So many of you think the same thing.  Well, I've got news for you.  It can also look like this:
 

Fishin' with Hubba

                               

 

Bench time

Hubba knows bait

Learning to catch grasshoppers

The COMPLETE family photo

Dress up!

Captain of the fryer.

The proud son and General Mom still barking orders.

A Cabin Thanksgiving with neighbors

"I'll sing you a true song of Billy the Kid..."

Moms birthday with all the grand kids

Chocolate and Love the world is whole.

I knew my dad was strong.  Hell, let's get real, he acts like a wolverine that can't find anything but plants and berries to eat; which has served him well these last few months.  The only thing I can think about is dad on the kimo drip for hours at the doctors, eating out of a giant sack.  Candy bars, chips, a burrito, olives, some crudites with dip and all washed down with a pot of coffee and a couple Cokes.  Meanwhile, the patients around him just staring perplexed.

DAD:  "CHIP?"
FELLOW PATIENT:  "Umm, no thanks." 
DAD:  "OLIVE? SNICKERS?"
FELLOW PATIENT:  **blank stare** 

Of course, I walk away for a few hours and come back to dad holding court.  His eyes are twinkling blue.  The air in the room seems lighter than when we walked in hours earlier.  He is smiling from ear to ear and so are others in the room.  They've been Eddied.  Dad don't use up your energy on people you will probably never see again I thought.  How selfish of me, he needs them.  A social animal, nothing like the aforementioned wolverine.  Perhaps I should change my comparative animal?  Nah, a wolverine. Just one that ate a caribou that afternoon.  

Last week dad took every test and poke possible.  This Wednesday they go over the results up at Stanford.  Is dad still a candidate for a STEM CELL TRANSPLANT?  If yes, then he will be hospitalized on Friday morning to get prepped and then zapped with a largest dose of  kimo yet.  Released in time for his 65th birthday on Monday, December 12th.  Then we start asking St. Nick for stem cell production to increase.  

Nerves are high around here.  Does this feel like Voldemort all over again?  That's right.  I just dared say his name.  
         

BRING IT ON!!!