Christmas Quiet and Not So Quiet

So last Christmas we got to do some pretty amazing things, but it was somewhat tempered by my breast cancer diagnosis and impending surgery.

This Christmas I can feel the weight lifted from our collective shoulders and a moment to breathe a sigh of thanks that God has brought us through this 3 1/2 year journey.  This year, no painful, conscious choice to have faith in the hope that one tiny babe born in Bethlehem can bring; no choosing to believe that God is at work while my heart aches and soul cries out and questions "why is this happening?"

Full disclosure here -   I was sure tired of that.

God knew that too, as I have a policy of full disclosure with Him also.

He knew that I have longed to be one of "those people".  You know, those people who have faith easily, mostly because their life is going fairly smoothly.  They might be annoying at times, but I prayed to be one of them, if only for a little while.  And this Christmas, I get to be one of those people!  Carson's treatment finished and no scheduled surgeries for me are just two beautiful gifts from God this season.  Paul busy at work and doing well (he continues to be the lone holdout in the "diagnosis department") and Francesca becoming a record breaking freshman on her high school swim team round out the gifts very nicely.  Hallelujah!

So, it is only fitting, with the good times we're experiencing, that Carson would be more than just a little excited that Christmas is coming.  There is evidence all around the house.

We have two advent calendars that must be tended to daily.  ALL the Christmas decorations are out (at Carson's request) - that hasn't been done in 3 years.  And, numerous attempts have been made to open the presents, or two presents, or "just one present" early.  Not gonna happen.


North Pole

We were all again invited by the kind folks at United Airlines and Special Love to visit Santa at the North Pole.  This year, Chuck and Grandma got to join us as well.  Many, many gifts were received and Carson spoke direct to the big man himself.

 Destination:  North Pole

Weather report on the screen at the gate....

 The plane has arrived and is ready for boarding.  Carson has his special VIP pass hanging around his neck.

 Ready for take off.  Windows had to be closed since the flight path to the North

Pole is "top secret".

What does one do at the North Pole?  Shoot Nerf guns, of course!

Ocean City

We made another trip to Ocean City, mostly for the Believe in Tomorrow Volunteer Christmas Party.  To hear Carson tell it though, it was so he could work some shifts at Hooters with Mr. Jason.  He asked me before leaving for Ocean City "Do you think I'll be done working in time to play some miniature golf?"  I told him that we could probably do that.  (We did.)

 First the party.  Carson and Mr. Jason do Christmas crafts and the children pose for a picture.

 Carson with Mr. Jason and Mr. Matt, who brought some early Christmas to the "manager in training"

Note the key chains on both Carson and Jason.....

 "Manager Break!"

 Manager at work at the cash register.  Yes, his key card works!

 In front of Carson's picture hanging at Hooters West OC.

 Making sure the kitchen is staying on track....

Later that night, a second shift making pizza with Mr. Jason of Mancini's.

No wonder Carson was exhausted when the weekend was over!

So, with all this fun, excitement, and showering of gifts on our kids, Christmas Day at our house, will be more than a little quiet.  That's fine with us.

Actually, if we could just pass into 2013 very quietly, that would be just fine too.

-Jennifer

First Post Treatment Clinic Visit

On Friday we had our first visit to the clinic post treatment.   For this first year off treatment we will visit once a month.

WOW!  We were there 1 hour and that was it.

Check counts, see the doctor, make appointment for next month and leave.

Carson's ANC has risen to 5070 and the incision from his port removal surgery is healing well.
He is eating well and feel great.  We are all enjoying the fact that we will not have to start steroids this week!

-Jennifer

It REALLY is over!

That's what I said yesterday just after the surgeon left Paul and I in the waiting room of the hospital after explaining that Carson's port removal surgery was all done and had gone well.

We waited about 20 more minutes and then spent the next hour and half in recovery with Carson.

Before we left, we were handed the port in a plastic storage bag.  Carson asked to keep it.  Wouldn't you want to keep something you've had for half your life?

We were all home by 11:30 (even after stopping at McDonald's for post surgery chicken nuggets and fries).

Hard to believe we are starting a life where a fever doesn't mean an automatic trip to the ER.  Hard to believe we won't need numbing cream and Press N Seal before heading to the clinic.

Clowning around in the prep room

He was a little grumpy post surgery, but a little hungry he was not.

Goldfish, Cheetos, Teddy Grahams, popsicles and apple juice were all consumed before we left post op.

Then we stopped at McDonald's for even more food before arriving home.

Today, Carson is tired and has a sore shoulder, but he's doing well.  He slept 14 hours last night, then came home early from school and took a two hour nap!  Gotta love that anesthesia!

-Jennifer

Keep on Goin'

We had a brief moment to contemplate Carson's end of treatment on the 16th and then things just kept on truckin'!

The morning of the 17th was the Spend Yourself 5K, which Paul and Francesca ran.

PK, FK and Bethany post race

Later that day it was Francesca's birthday party at the bowling alley.

Sunday morning was Francesca's actual birthday and another round of gift giving............

.......and then we were on to Thanksgiving

Yes, we ate chicken enchiladas and Carson had his Thanksgiving mac and cheese.

We were joined by our friend Katelyn, who did not find chicken enchiladas strange at all!

.....and a visit to Ford's Theatre on Friday

 Not the best pic, but proof we were there.....yes, that's Lincoln's box way up at the top.

......another 5 K today in honor of our friend's son, Joshua Newman

A much colder 5K than last weekend, but still a great cause....epilepsy awareness.

.....then, later this afternoon,  Carson's birthday party back at the bowling alley.

BREATHE....BREATHE....BREATHE

save that for tomorrow.......

and Monday will bring about Carson's port removal surgery scheduled for 9AM.

WHEW!!!

Now it is on to Christmas stuff!!!

Free to a Good Home

Free to a Good Home

One new, unopened strawberry syrup bottle

Multiple medicine dispensers - well used. :)

It is indeed a Happy Thanksgiving around here!

End of Treatment - Day 1225!

Day 1225 - yesterday  - our war on leukemia came to a close.

What began as one of the biggest crises of our lives, ended with absolutely no fanfare, other than a celebration of a little boy's 7th birthday, and a quick shot of 6MP about 10:30 last night.

Presents!!!!

 

 My very own tool bag, tool apron and construction hat!

 

So many Legos, so little time.....

Here it is folks:  The last dose of 6MP 

Carson's last dose of 6MP, as usual, he didn't even wake up, even with the flash from the camera.

Also as usual, the full weight of "last doses" did not hit me until this morning.  I DELETED the medicine reminders for prednisone, methotrexate and 6MP from my phone.  I didn't just have to turn them off, I DELETED them.

They no longer exist,

 just like Carson's cancer.

 

In continual praise to God,

Jennifer and the entire King family

Last Push

Carson had his LAST Vincristine push on Nov 9th.

We visited with Dr. L first.  Carson's usual exam was completed only after the Legoland album viewing....

 Next it was on to play the Wii and wait for the chemo.  Carson could not manage to stop playing the Wii long enough to appreciate the occasion.

 Since it is also his birthday week, Carson received some birthday presents, was serenaded by some of the staff and received a certificate.  Evidently they thought he was a great patient.

We will stop all chemo on November 16th, his 7th birthday.  Arrangements are being made to remove his port.  And just like that, it's almost over................

-Jennifer

What Carson Did This Summer Part II -Our Make-a-Wish Trip

Ok...we're a little behind in our updates.  We had all the best intentions - to upload our September trip as soon as we go home.  Instead, we went to the hospital for the better part of a week, sickness invaded our house, then Jennifer had surgery...the list goes on.  Anyway, for the record, here's our Make-a-Wish trip to Legoland Florida.

After an "in depth" interview with Carson, Make-a-Wish put together a dream come true package for our family - two days at Legoland Florida, one day at Busch Gardens Tampa, and one day at Disneyworld.  Our trip started on August 26th when our ride to the airport arrived at our house.  A stretch limo!

 A very excited Carson prepares for his first limo ride!

Rough Start Pays Off

The limo ride was pure joy, but the start of our trip wasn't exactly smooth.  Our flight from DC was delayed by 7 hours.  When we arrived in Orlando, it was late and rain bands from hurricane Isaac were barreling down on the city.  Monday morning was a complete wash out as bands continued to move through the area.  Looking at the radar on tv, however, it looked like things might clear up a bit after lunch.  We called to Legoland to make sure they were open - they were - so at lunch we headed out.

Welcome to Wally World!  Carson and Francesca prepare to enter a deserted theme park.

Turns out Legoland was open and fully staffed, but otherwise DESERTED!  There were only about 20 cars in the parking lot once you added them all up.  We were the only ones in the stores.  And we walked onto any ride we desired.  For those of you who saw National Lampoon's Vacation, it was like the Griswold's when they went to Wally World!

 

 Carson has the roads to himself - phew!

Tuesday we spent half a day at Legoland and half a day at Busch Gardens.  Wednesday we were back at Legoland (and the water park).  Thursday we hit Disney's Magic Kingdom.

The animal theme at Busch Gardens was a big hit!

Success!  We got our parents onto the Teacup ride and spun them into oblivion! 

Rejuvenation!

By the end of the trip we were wiped out...but in a good way.  The time together - time just to have fun - was a delight beyond measure.  For those of us who have grown too old to remember, Carson and Francesca continue to be walking reminders that we need to enjoy the day.  As parents we frequently say don't fret the small stuff. But it's the actions of our children that teach us not to fret the big stuff, either.  Thank you, Lord, for that reminder and thank you Make-a-Wish for providing such a wonderful experience!! 

-Paul

What Carson Did This Summer - Part I

This has been a long time in coming, but Carson got to do some REALLY cool things this summer.

The first was the opportunity to be a patient escort for Bobby Mitchell's Hall of Fame Golf Classic benefiting the Leukemia and Lymphoma Society.

Carson's Patient Escort Badge:  His Ticket to the Event

This was no small event, but rather a weekend of events that included a black tie dinner on Saturday night.  Some 30-40 Hall of Famers give of their time for the weekend.  Various companies and individuals buy tables and enter the golf classic for the privilege of eating with, playing a round of golf with, spending time with these amazing athletes for the weekend.  Bobby Mitchell, a hall-of-famer himself and former Washington Redskin, has been lending his name and credentials to this event for 20 years!

I don't know if Carson realized what esteemed company he was keeping that Saturday evening, but he may later in life.

The first step in getting ready for the event was finding the right outfit.  Carson elected to wear his dark suit with a light blue shirt and striped tie.  He even decided it was important enough to skip the tennis shoes and instead go out and get some real dress shoes.  He was really excited about them.

We arrived at the event early to receive our instructions and rehearse a bit.  Carson practiced coming out from behind a curtain, walking to the center of the room, then returning to his place behind the curtain to pick up the next athlete.  He looked great, and certainly looked like he knew what he was doing, but I wondered how it would be when he was doing it in front of about 300 people.  He was the youngest escort by at least a few years, most of the others were probably between the ages of 10 and 13.

It sure looked like it was going to be fun; but we had fun even before the event got started.   As it turns out, Carson was given a special program with photos of all the Hall of Famers and the teams they used to play for.  We were ushered into the VIP room of the hotel and there, Carson got to collect autographs from all the players he could harass.  They were great and Carson collected about 30 signatures from names such as Meadowlark Lemon, Larry Little, Mel Renfro, Jan Stengrud and more.

Tom Mack??  of the L.A. Rams

Thanks for the autograph Meadowlark.....

Carson with Larry Little of the Miami Dolphins

Next, it was time for the dinner.  Carson and the other escorts took their place behind a black curtain, the athletes lined up, the lights were low, the spotlights were on, the attendees were all waiting at tables, the closed circuit cameras were panning the crowd, the emcee was speaking.  And then, he decided to introduce the patient escorts one by one.  I thought "uh-oh!  Carson's going to be shy for this", and I was COMPLETELY wrong.  When Mr. was introduced, he stepped right out from behind the curtain, spotlight shining full force on him, cameras transmitting his image on multiple screens and thunderous applause ensuing.  He waved and smiled and didn't quit until someone tapped him on the shoulder to let him know it was time to return to his place BEHIND the curtain.

Then his "work" started and he was a pro.........I think he was the best escort out there, and if not that, certainly the most adorable - as a lady at one of the tables told me so!

The littlest escort seats the largest guy there...Willie Roaf of the New Orleans Saints.

All in all, Carson had the privilege of seating about 8 world class athletes.  What an honor!  I took lots of pictures so he can remember it later and, of course, we have the program with all the signatures that we are in the process of framing.

Thank you Leukemia and Lymphoma Society for such a great experience!

-Jennifer

Preparation

"Frankenstorm" is heading this way, so we've received several calls this morning to ask what we are doing to prepare.

Let's see.....

Rake leaves,

Toilet paper,
Water,
Diet Coke,
Chips and Salsa,

IGG infusion.......

Yep, we're all prepared!

Carson began complaining of his ear early, early Friday morning.  An unplanned visit to the clinic yesterday revealed a red, bulgy fluid filled right ear, elevated counts and the usual congestion.  Since it had been 8 weeks since his last IGG infusion, We all elected to go ahead with IV IG even without knowing the counts.  Chances are good his levels are low again, and no one wants to be heading to the hospital in the middle of the storm.

This morning he's feeling good and playing as usual.

We may avoid the ER this weekend.

Jennifer

October 15

I will remember October 15, just like I remember November 16, November 18,  December 21, July 10 and July 25.

November 16, 2005:  Carson's birthday

November 18, 1997:  Francesca's birthday

December 21, 1999:  Francesca's diagnosis of diabetes

July 10, 2009:  Carson's diagnosis of leukemia

July 25, 1992:  Our anniversary

October 15:  Carson's last scheduled spinal tap!  It went without a hitch. 

Here's to more happy dates to remember - the next one November 9:  Carson's last scheduled chemo and steroid round.

-Jennifer

Up Goes the Chemo

All around the clinic
The nurse chased the patient
The finger poke revealed it was time
UP! goes the chemo......

Sometimes I feel like I'm living in some sort of bad nursery rhyme - the horrible aspect of cancer mixing with a simple children's song and you find yourself thinking it's funny.  You have to think it's funny because the only other choice is to cry......

We had a clinic visit yesterday.  The chase mentioned above only occurred when Carson realized he'd be getting a flu shot along with the finger poke.

Counts are lower than before, but remain elevated.  Since Carson appears to be doing fabulous health wise - as in cough, congestion, ear infection are gone- the doctor made the decision to raise his 6MP and MTX dosages.

We will go back to the clinic on October 15th.  3 whole weeks.

Of special note is that on October 15, Carson will be receiving his last spinal tap of the protocol!!!  That means it could be his last spinal tap EVER!  That is just too weird for me to even think about right now.  I know we've been doing this for over 3 years, but it seems like we've been doing it forever.  And to just stop doing it one day, that blows my mind and scares me to death.

In other news, I am healing fine.  I have a follow up appointment with the plastic surgeon on Thursday and hope to have this horrible tape removed; at which point I am hoping to get on with a life without surgery!

Paul is working very hard and planning several trips overseas.  Francesca has returned to her busy swimming schedule and seems to love 9th grade.

Enjoy your week!  Now that we have clinic out of the way, we are looking forward to doing the same!

-Jennifer

Chemo restarted/ ER revisited

As it turned out, it was time to restart chemo last Monday.  Carson's counts had recovered to decent levels so 6MP and methotrexate began again, but at half dosage. 

A few days later we got a call from the clinic.  Carson's IGG level was still low - big surprise - and he would be receiving that the following Monday during his regularly scheduled chemo appointment.

Fast forward to Friday, Carson starts to complain of his ear hurting.  On Saturday, we'd progressed to a low grade fever.  By Sunday afternoon we were in the ER with a 101 temp.

Counts were really high though (almost 9,000 ANC), so we got our antibiotics and left.

That brings us to today.  After a meeting at Francesca's school to write up a 504 plan for her, we had a semi-marathon clinic visit that we haven't seen in awhile.....IV antibiotics x 2 (rocephin and pentamadine), Vincristine push plus an IGG infusion.  Add to that the start of steroids, the weekly methotrexate dose and the beginning of an oral antibiotic round and we've got one juiced up little guy!

Will it be enough to get him well and back at school?  We will find out in due time.
 
-Jennifer

First Day of School/Clinic

It was a little bit late, but Carson made it for HIS first day of school today.

We decided to let him keep the red mohawk.  I haven't heard anything from the school yet.

Later this afternoon, Carson will go for a counts check at the clinic.  We suspect it will be time to restart chemo.

In other news, my latest surgery went fine.  I am sore, but able to get around and not in too much pain. I'll be good as new in a few weeks.

-Jennifer