Summer Sneak and Take Off

Summer snuck up on us and has taken off.  Now that I've finally gotten a little bit used to the new schedule, it's almost over and I'll have to start thinking about school schedules!!

What has happened in the last 2+ months?  Let's start with the baseball game.  The Diamond Dreams baseball game did finally happen after 4 weather delays.  Wow, did we have a gorgeous day for baseball when we finally did have it!  Carson did well, despite suffering from his itchy rash.  He walked right out to the pitching mound and threw the pitch in front of everyone just like he'd been doing it all his life.  After he pitched, the George Mason High School players gave him a ball they had all signed.  It now is housed next to the Bryce Harper signed baseball in his room.  All in all, the team raised $5,000 for Kyle's Kamp which supports pediatric cancer research.  How awesome in that?

 Waiting for his introduction!  Carson had a special jersey made just for him and the players also wore golden jerseys.

Carson and the Team Captain

 

 

 

Team Shot!

 

We went through a round of IEP (Individual Education Plan) meetings regarding Carson and his schooling.  He was found eligible for special services, went through rounds of testing with various specialists, and then we all met back to determine exactly what will be most helpful for Carson when 3rd grade begins.  He needs more help in math, more help with multi-step directions, more help recalling information, accommodations for testing, some more work with an occupational therapist and summer school.  Yes, we still have a lot of work to do to counteract the chemo and radiation.  We are so thankful though that there is so much assistance available for Carson.  How many kids in Carson's situation have 8 or 9 people meeting multiple times a year to discuss what's best for them and how to help them?

After all that, we made it to the end of second grade and then a whirlwind of activity began along with a visit from Paul's mom.  Carson spent 1 week at baseball camp, started swimming for the summer swim team and then began summer school 4 times a week.

Between Francesca and Carson swimming, plus summer school the week is packed - thank goodness Francesca can drive herself to some of this and even shuffle Carson around some.  How?  Chuck and Grandma brought her a car on Memorial Day weekend.

A 2006 silver Imapala belongs to her now!

Here is the bare bones schedule:

Monday:  Carson Summer school, Francesca swim practice, Monday evening swim meet
Tuesday:  Carson Summer school, Francesca swim practice, evening swim practice for Carson
Wednesday:  Carson Summer school, Francesca swim practice
Thursday:  Carson Summer school, Francesca swim practice, evening swim practice for Carson
Friday:  Morning swim practice for both kids
Saturday:  Swim meet for Francesca
Sunday:  church and collapse

Somewhere in there we are supposed to also be going to Tae Kwon Do, but that has not happened yet.  I'm not including piano lessons in here either or the hours I work at church, or the hours Francesca is putting in taking a class this summer; I'm not sure I want to see all that schedule in writing.

Earlier this month we made a visit to the clinic.  Carson's counts were great - no need to return until September.  After the September visit, we will have one more visit to the clinic in November and then we can..... (wait for it) start going to the clinic once a quarter instead of every other month!!  Both kids will be on a quarterly schedule - wow what will that be like!?  And isn't it nice that we can talk about going to the clinic less often?  Others in recent weeks and months have not been so lucky.

Carson's diagnosis anniversary on July 10th came and went more quietly this year than in years past.  No tears shed this time.  It was a happy time to catch up with people at the hospital as we delivered lunch.  Carson celebrated by playing video games and staying up until 9:00!

5 years since diagnosis and we're still standing.  Thanks in part to these guys!

After my hospital gown "modeling" experience at my MRI in May, I got word from my oncologist that I continue to remain cancer free.  Thank you tamoxifen!!  That means no doctor's visits for me until December.

Paul continues to work hard, leave work early to watch kids swim and ride his mountain bike.  He had a bad cold a few days ago and stayed home.  Someone was glad....

We hope you are having a great summer and don't have to get sick to get a little bit of rest like Paul!

-Jennifer

May

Spring has brought an interesting mix of things to our plate - and I mean that literally.

Carson was chosen to throw out the first pitch at the Highschool baseball game because they were doing a fundraiser for Children's National Medical Center and Kyle's Kamp.  Due to weather, no pitch has crossed home plate.  The game has been rescheduled 3 times, but tomorrow it may finally happen as the forecast calls for sun and pleasant temperatures.

On to other plates. Carson has decided he will eat grilled chicken.  He has not taken a bite of chicken in anything other than nugget form in his entire 8 years.

We had a visit to the pediatrician for an ear infection in April.

We went to the clinic last week.  Counts are good.  Oddly enough, the clinic visit was the shortest visit to a medical institution we've had in the last few weeks!

We have been to the pediatrician twice this week for rashes of unknown origin.  The first was confined to his arms and behind his ears.  Yesterdays new rash, or further worsening of the first one, gave us hive like spots all over the body.  Itchy and miserable and nothing to be done other than doping with Benadryl and slathering with cream.  Some have even coalesced into one big hive.....

I am considering using the recording app on my phone to play "stop scratching" on a continuous loop.

Francesca has started swimming with a new team and is loving it.  More than that, she loves driving HERSELF to swim practice.  

In other news, I had an MRI yesterday and did bloodwork for the endocrinologist.  I'll find out about all that in June during appointments at both Dr.'s offices.  About all I learned yesterday is that I must remember that heels DO NOT look good with a hospital gown and I should bring socks or flip flops.  This is now my 4th or 5th MRI and I find that I tend to forget everything about it (or blot it out) each and every year.  After changing into my hospital gown yesterday, my memory was jarred in a most unpleasant way regarding the shoes.  I walked down the long hallway to the imaging rooms - click, click, click went my heels and all the other bored people in various states of dress turned to see what was making that noise.  I should have acted like I was on the catwalk....but was too horrified.

Here is a pic of the game program to close out this post.  I will spare you the picture of his rash - yep, saved that one for the grandparents to view this morning.    If you can't read the "bio", I've posted it below the picture.

Have a great weekend everyone!

Carson King is 8 years old and a 2nd grader at Thomas Jefferson Elementary in Falls Church.  He was diagnosed with T-cell Acute Lymphoblastic Leukemia in July of 2009 at 3 1/2 years old.  He was treated through Children's National Medical Center and underwent chemotherapy for nearly 3 1/2 years before finishing treatment on his 7th birthday in November 2012.

Carson is an active boy who enjoys legos, video games, riding his bike, swimming, bugging his older sister Francesca and, of course, playing baseball.  His favorite subjects at school are lunch and recess.  He hopes to begin his own baseball career in the near future...that is if a career  as "professional video game player" doesn't work out.  Carson and his family wish to thank George Mason High School baseball team, Kyle's Kamp and all those here supporting pediatric oncology research.

Normal

It has been nearly 4 months since our last post.  I guess because life has pretty much returned to normal.  Oddly enough, normal still involves a lot of medical appointments; but they are usually fast and uneventful.

So, here's a quick wrap up of the last few months:


We went to swim meets EVERY weekend from January through February and watched Francesca swim with her high school.  She swam great, scoring best times in her usual events 200 Individual Medley and 100 Butterfly again this year.  She placed 3rd and 4th in those events at States this year in Blacksburg, VA and the 200 Medley Relay, of which she was a part, finished first.  In fact, the whole team was awesome.  The girls team was State Champs Runners Up and the boys won the State Title!

On another more scary note, Francesca got her driver's license and can't wait until Chuck and Grandma arrive with her car at the end of May.  While I found myself crying in the driveway when she first drove off on her own, I quickly adjusted once I realized she could drive herself to swim practice and could even drive Carson around too!

Francesca's quarterly check up at the endocrinologist revealed she/we've got some work to do in regards to blood sugar management.  The usual refrain of "tighter control" was sounded and the suggestion was made that Francesca write a song for YouTube about bolusing and checking blood glucose.  Her Dr. and I thought this was a great idea, but she does not.  If you agree with us, please send that child a Facebook message!

Carson's January clinic visit was the first one we had had since November.  He's still doing fabulous.  We are in the middle of going through his IEP eligibility meetings with the school.  The main meeting to determine eligibility is at the end of the month.  He will be due for more neuropsych testing in June.

We sat through a presentation regarding "late effects" of cancer treatment recently which was both helpful and terrifying.  Many effects (other than immediate ones) of the drugs that we pumped through Carson's body do not start to show up until 4-5 years after treatment - kidney, liver, eye, heart, you name it.  At least doctors are aware of them and begin looking for signs while they can still treat and deal with whatever difficulties arise.

Just last week Carson had a happy reunion with Nancy Worcester, a talented children's entertainer and ventriloquist.  Nancy visited Carson at our house 4 years ago when Carson's counts were too low to go to the show that was being held at our church.  It was a joy to see him laugh so much then, and even more joyful to watch him meet Nancy and her puppet Waco again.

2010:  Carson just past heavy chemo and radiation, visits with Nancy and Waco.

You may remember that we posted video of this visit because Carson was laughing so much!

2014:  Here is the trio again, and Waco has not aged at all!

On my medical front, the latest mammogram came back clean - so in regards to cancer, the Kings can say we're not busy GETTING cancer, or TREATING cancer, we are KICKING cancer!  I am due for an MRI in the next few months.


I spent most of March and half of April co-coordinating Easter Eggstravaganza at our church.  This was my third year and I still love it!  My work as Guest Ministry Coordinator at the church and this event seem to fit nicely together.

My partner in Eggstravaganza crime, Martha and I take a quick selfie before things get too eggsciting!

Paul is working hard and keeping us all going as usual.  He has a new job at work, which involves managing more people and prestige.  He is really enjoying it!

And one last thing, in early March we had a new addition to the family - Oscar!  A two year old German Shorthair Pointer rescue that has settled right in to life in the King household.  Beckett took a few weeks to adjust to the extra energy, but seems to be enjoying a new play mate now.

Day Two post adoption:

Oscar decides snuggling with Paul is the way to get on the couch, but NOT get on the couch!

We hope this post finds you well and getting ready to enjoy a hope filled Easter!  Enjoy!
-Jennifer

Off the List

We passed another big milestone this last week with Carson.  He is completely caught up on his immunizations!
We took care of his chicken pox and MMR vaccines this last Monday and sent the records into school.  That means, he is off THE LIST....

The list that says
"this child is not required to have up-to date vaccinations due to his treatment"
"this child is immunocompromised"
"this child's parents need to be contacted immediately if someone in the class has chicken pox"

Of course, he's probably still on other lists.

The "I Would Rather Play Legos than do School work" list.
The "I Would Rather Play Anything than do School work" list.

The "I only sleep in on school days" list.

The "I enjoy bugging my older sister" list.
The "Mom, no really, I am a sweet boy" list.

You get the idea.....
I like these sorts of lists!

-Jennifer

Just Because.....

Just because we haven't posted, doesn't mean that nothing is going on and we haven't thought many times about writing SOMETHING.  Sorry, it has been so long.

Just because we haven't posted doesn't mean that several important milestones haven't come and gone.  They have.

So, just because it's Friday, I  post.

Carson turned 8 and is now officially one year off treatment.  We were treated to the news that he now only has to visit the clinic every other month.  We did not visit for the entire month of December.  (We did have to visit the pediatrician though for an ear infection)

Carson and I managed to take a good picture together before his baptism in November.

Francesca turned 16 and is at this moment, finishing school and heading to her behind the wheel course - learning to drive.  YIKES!

On a sad note, we lost our older black dog to cancer just before Christmas.  She saw us through two bouts of cancer and in the end, we couldn't see her through the same.  We miss her like crazy!

We visited Texas for the Christmas holidays, our first visit in a year and a half.  Carson and Francesca had all kinds of fun visiting with their Texas cousins - and meeting their new cousin Grayson.

January is off to a running start.  Clinic and doctor visits continue to result in good news for both Carson and I and our life continues on the path to normal.

Here's hoping your 2014 will be as normal as ours is starting out.....

-Jennifer

Normal and Not So Much

Things have been progressing around here normally - and not so normally.

Carson and Francesca started 2nd and 10th grades respectively.  Normal.

 


Carson runs to the bus stop without saying goodbye because he is excited to go to school in the mornings.  I believe this is normal, but not so great on my ego.

Francesca does not run to the bus stop; she doesn't run for anything - also normal.

Carson went to his September clinic appointment.  All normal.

And then, it's amazing how it all spins into "not so normal" pretty quickly.  For a solid week Carson ran an off and on low grade fever, he complained of his throat hurting for a few days, he had cold symptoms and a rash.

I took him to the pediatrician, fully expecting to be told to take him to the emergency room for more bloodwork, because a fever cannot simply be a fever.

Our child had cancer.

We will spend the rest of our lives always wondering which fever might be the "relapse fever".  We are no longer residents in that normal world where we expect to go in, walk out with a prescription, and continue on with our lives.

But that's exactly what we did..............


The boy had strep throat.  Normal!!!  Our reaction?  Not so normal.

Our family and friends were praising God for strep throat and sending texts exclaiming how happy they were that Carson was only sick with strep throat.  And we were doing the same right along with them!  Geez, that kid had had strep throat for a week!  He barely complained, which is a testament to how abnormally tough he is.
...... and now friends and family are rejoicing in the fact that he's sick.  How normal is that?


After two days of antibiotics, Carson went on to graduate to gold belt in Tae Kwon Do.

We took Francesca to a swim meet (where she rocked some best and near best times!) and then we were around to take pictures of her before the big homecoming dance.

Let's see.  Normal, normal and normal................we will take it!  Throw it at us!  Normal all the way baby!

-Jennifer

A Shot of Baseball

One of the little known facts about cancer treatment in kids is that all those shots for mumps, measles, chicken pox, etc. that they took as babies, well, they're probably going to have to get them again once chemo is over. 

Such was the case for Carson yesterday at the pediatrician's office.  He received two shots - and made his appointment for another round in November when he will be a year off treatment and able to have live vaccines.  After all he's been through I thought he wouldn't care too much, but he basically acted like every other kid that has to get a shot.  UGH!

After the shots, it wouldn't have been too hard to make the day get better; but lucky for us, we were headed to the Nationals Ball Park.  Our day was about to get A LOT better.  It was time to stalk, I mean VISIT,  the Nats star player Bryce Harper.

Before Thursday, Mr. Harper was assured of at least one super fan (in the form of a light brown haired, dark eyed little boy).  Today, Mr. Harper has a whole family of super fans to contend with.  I'm getting ahead of myself though.  Let me start from the beginning......

and before the beginning, a big THANK YOU to Harper's Heroes and Leukemia and Lymphoma Society.

It all started by getting on the right gear, a Harper's Heroes shirt and a magic wristband!

The magic wristband gave Francesca and Carson, along with a handful of other kids, access to Nats batting practice.  There, they stood within a few yards of Davey Johnson, the general manager, and watched hitting phenoms like Ian Desmond, Ryan Zimmerman, Anthony Rendon and Chad Tracy hit ball after ball out of the park.

(I am hoping the magic wristband also has special side effects that include children automatically cleaning their rooms and carrying things for themselves!)

That's Davey Johnson near the guy with the green shirt and Anthony Rendon about to take a swing.

Next it was on to the Nationals Press Room to meet with none other than......

 Can you guess who these legs belong to?  Photo credit:  Francesca

BRYCE!!!  Bryce spoke to kids and parents about family, faith and baseball.  He said "If no one is laughing at your dreams, they're not big enough."

After that, the floor was open for questions.  Carson was silent, and I think I spotted drool coming out of his mouth.  Francesca asked him what he did for cross training (he does CrossFit) and about his tattoos.  He sports Mom and Pops on his wrists and, although we didn't get to see it, he's got Luke 1:37 on his torso.

Luke 1:37  "For nothing is impossible for God"  CEV

Imagine confidently living out that verse in daily life! 

Then it was time for pictures.........

Carson and Francesca brought Bryce a souvenir from the Field of Dreams movie site that we visited on vacation as well as a 8x10 glossy of the picture Carson took with him earlier this summer at Dave and Busters.  I think Francesca is hoping for a re-creation of this picture without mom, dad or Carson for an upcoming school formal.

And then it was time for signing things..............

 Carson got another copy of his pic with Bryce signed, his hat signed and a batting practice baseball signed!  Francesca and Carson immediately started to fight over whose room would play host to the baseball.

Francesca got her shirt signed.  By the way, everything he signed included the Luke 1:37 verse.

And then, we finally made it to the baseball game,where we watched Bryce hit a 2 run home run, doing his part to help the Nats to a 7-0 win over the Marlins.  A little visit with Taft, another photo and we had one tired boy on our hands.

He was so tired in fact, he claimed "he hadn't had any fun at the ball park",  yeah, right.... that smile and pizza sauce all over his mouth don't mean a thing.

We got the boy into bed around 11.  He still had energy enough for a few more rounds of verbal sparring with Francesca about the signed baseball as he went to bed.

For a now healthy 7 year old what could be better?  A visit with your hero and a fight with your older sister, in that order!  Shots?  What shots?

-Jennifer