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

4 Years Ago

It was 4 years ago, on this very day.....

Carson was diagnosed with leukemia.

It is all good news today though. 

We took lunch to the hospital staff on the hem/onc ward in celebration of the day that Carson began his HEALING.

 Carson and Miss Holly from Child Life.  She saw us all through lots of boring hospital hours!

We went to the clinic yesterday to let Dr. L confirm what we already knew.

Four years after one of the worst days of our life, Carson is thriving.  He has grown another 1/3" this past month and gained another 2 pounds.  Blood work continues to look terrific.

A new normal is setting in and life is going on.  A great, wonderful, new normal.

Thank you God!

Pancake Boy Strikes Again!

My son was not chosen for the Leukemia and Lymphoma Society's "Boy of the Year" campaign- he was chosen instead, as he puts it, as

"National Pancake Boy".


Could it be because he does things like this?

This picture was supposed to be a very official looking photo of some big wig from Toyota, a big wig of LLS and  the LLS Boy of the Year all presenting a check to the foundation Harper's Heroes.  The foundation that the Washington Nationals' Bryce Harper founded a little while ago. 

It IS a very official looking photo.

Except for that boy in the back stalking Bryce Harper.

I'm told he was not stalking Bryce Harper.  Bryce Harper and Pancake Boy are friends it seems. 

Here is the evidence:


They play basketball together.

They walk together and, no doubt,  have deep conversations

Pancake Boy gives Bryce Harper gifts and poses for pictures.

The picture Bryce is holding is from last Halloween.

Carson went as Bryce Harper and Francesca dressed as Jayson Werth of the same team.

So, I guess it is not stalking.....and naturally, Carson is going to hang with his friends, no matter what they might be doing.


I don't think Carson will be candidate for "Boy of the Year" anytime soon.  We will settle for giving him a new title of our own choosing though

"National Pancake Boy of the Year" .....and non stalking friends with Bryce Harper.

Thanks Leukemia and Lymphoma Society, Toyota, Dave and Buster's and Harper's Heroes for a great evening!

-Jennifer

Dear Office Staff

Dear Front Office Lady at the Pediatrician's Office,

I am so glad that we can come to the pediatrician's office when we have a minor health problem, really I am.  I'm so glad that my boy looks like a normal little boy to you.  I'm so glad to be just another family coming through your office doors.

The fact is though, he hasn't been to your office for two years because he was in treatment for cancer.  And I don't want to fill out any more paperwork!  I am not a jerk and unreasonable.  I just don't want to fill out any more paperwork!!!  Nothing has changed, we were in treatment - we didn't change our address, we didn't change our phone numbers - we were occupied with caring for our child.

So, I apologize for rolling my eyes, sighing loudly and generally not being nice, but don't expect my attitude on paperwork to change any time soon.

Sincerely, Jennifer

Several Updates

Carson's last clinic appointment was in May.  Things still continue as they have.  Carson eats, Carson grows. Carson's energy level continues to go up and up.

He had grown a half inch from the previous month.  He has learned to ride "a two wheeler".  Looking at him, you would never know what he's been through in the last three plus years.

Immunity markers were checked with this last visit.  They are checking whether he has any resistance left to normal childhood illnesses that one is usually vaccinated against.  Mumps, Measles, Chicken Pox, etc.  When chemo started, all vaccination boosters were halted.  It is more than likely that whatever he received pre-diagnosis got wiped out too.  We will find out tomorrow if he will have to be re-vaccinated because it is already time for his June clinic visit!  (Yes, I'm that behind in updating!)

In other news, I managed to start cleaning out some cabinets that had remained largely untouched during Carson's treatment, and I got brave enough to put this away.......

 Here's praying we won't have to get this out again..............

and in further "bravery", I have accepted a very part time job at my church!  It is 10 hours a week, but I get an office, an extension and a title "Guest Ministry Coordinator".  It is basically managing the groups of volunteer that greet and welcome any guest that visits the church.  It is a very new experience to be working at something other than teaching piano!

Finally, I saw my oncologist on Monday.  The MRI was clear and I will not need to visit for one year!

We are now nearly seven months post Carson treatment and continue to be thankful that life is just getting more normal all the time!

-Jennifer

What Shall We Do With Our Gift?

When I hear stories of our fellow cancer families and their suffering, I am always wondering "why?"  Why is Carson healed at this particular time and what would God have us to do with this gift?

Below is a post from another family we came to know through mutual friends and the clinic.   Please read it all the way to the end and add the Waters family to your prayers.

***********

This has been a hard week for us.  Last Friday we visited our sweet oncologist here in Virginia for the first time since returning from Texas, and she was pretty blunt.  She said that it will be very hard to cure Samuel and that most people in his situation die.  These words were hard to receive.  I had hoped she would affirm how positive it was that the cancer was not in his organs, etc, that it was still "just" in his soft tissue.  Instead, she said that since we know it  has travelled in his bloodstream the prognosis is bad.  So, science does not offer much hope to us.   

What this has done though, is to pull back the veil and reveal the reality that we all live under, whether we know it or not.  Our only hope is in Christ.  For these last two years I have known this.  I told our doctor that the God who made Samuel and loves him will cure Samuel, and he will use her and the medicine to do so, or he may cure him some other way. This week we have grown ever more hopeful and certain of this.  

On Sunday, Jim organized a time of healing prayer for Samuel after our church service in the balcony.  25 - 30 people read scripture and laid hands on Samuel to pray for his healing.  Our priest Nicholas anointed Samuel's head and hands. It was one of those moments when heaven opens and the angels ascend and descend.   We read passages starting in Genesis and going through to Acts, affirming many truths.  Among them:

• We are made in God's image
• Sin/evil came into the world and broke our relationship with God; we now live in a "fallen" world
• Christ was sent to us to redeem us and all creation
• For those who belong to Him (those who receive Him/believe in HIm), He gives an abundant life
• Christ taught us to love God and each other; He showed us how to be his hands and feet here on earth
• When Christ left, he gave us the Spirit so we could carry on His work in His name; teaching, preaching, loving, healing, redeeming. Glorifying God. 

We believe that Christ is healing Samuel. 

Please join us in praying for Samuel -- we ask that you pray in the name of Christ.  

Here is a verse from Zephaniah that I keep saying --

Zephaniah 3:17(NIV) The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.

Last Sunday I was walking on the bike path and kept saying out loud, "He is mighty to save, mighty to save."  I was walking along saying this, and this cute little boy, probably not long off his training wheels, rose up beside me on the parallel gravel path, elevated above the bike path.  He said "look mom, look at me."  What a cutie.  Then his dad and mom passed me, and I recognized them from the clinic.  This is the boy we met who has been healed of leukemia.   Yes, our God is mighty to save.  

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

It was no coincidence that we rode by our friend that day on the bike trail.  What would God have us do with this gift of healing and health?  Provide hope at a crucial moment to a family in crisis?  Simply by living life with joy?   That's what He would have us do on that day.  May He continue to use us for His good in any way He sees fit!

-Jennifer 

The List We Took For Granted

Everyone has a list of things they'd like to do.  Before Carson's illness, we were in the habit of making our family list and assuming that we'd get it done, almost like we were somehow entitled to its completion....that we would do that particular thing, and then get on with the next thing, and so on and so on.

Great Wolf Lodge was on our list.  Wouldn't it be fun to go there when Carson got his swimming down?  He was in swim lessons, so I was sure we could get to it sometime that fall of 2009.

We never did get there that fall.  We didn't get there for the next three years, my little list that I wanted to check off didn't seem so important while sitting in a hospital room praying for God to spare my child.

I might LIKE to do all I had planned with my family; but it is through God's grace that I get to do it.

Enter Great Wolf Lodge, April 2013.

I thought, "Maybe we could go there for Spring Break?" "Maybe it is our time to go there?" " Mr. is off treatment now and what would that be like? - to travel with 1/3 less medicines than usual?"  (Still gotta bring my meds and Francesca's....)

We got there.  Carson loved it.  Watching him splash around, attempt the "scary" water slides he never would have tried three years earlier, made me stop and thank God one more time for these continued moments of happiness.  I even thanked God when Carson fell off the mat and got scraped up like a NORMAL boy. 

"Thank you so much God that Carson shut the water slide down with his "accident" and then said "I'm OK, let's go on that slide again!"

Make your plans, let God take you there according to HIS timing...........

No fighting right now, just fun.......



Relaxing in the Wolf Den....they must be related some how.....

-Jennifer

We Owe You

We are long over due in posting.  Life has taken over - in a good way - and Carson continues to thrive.

His latest bloodwork in early April revealed that he's still doing great.  The scales also tell us the same thing as he continues to constantly eat.  If you have any spare dollars, I recommend stock in General Mills, as Carson and his Honey Nut Cheerio obsession will keep the company afloat no matter what happens to the rest of the economy.

A new post will come soon - thanks for waiting!

Jennifer

Carson Clinic Update

March 1st brought us to the clinic for Carson's monthly blood check.  He continues to do great, counts soaring, hemoglobin and platelets like a normal person.

He still continues to eat us out of house and home and our thoughts as to why are confirmed:  The boy is growing like a weed.  He measured 51 inches and a whopping 59 pounds. 

His adjustable waist pants, which were previously cinched to the smallest they could be, have now had to be adjusted to allow for some added weight; the legs, however are getting too short. 

I am hoping the warm weather starts soon and he can switch to shorts before I have to buy new pants!

-Jennifer

National Pancake Boy Part II

Carson had a great day at National Pancake Day.  He relished all the attention - as if he doesn't get enough - and spent most of the day smiling and laughing.  At least until about 3 o'clock, when he got tired and the excitement wore off.   Then the only thing acceptable was some heavy "blankey" time and the parking of oneself in front of the TV to watch numerous shows on Netflix.

The day started in Rockville, where Carson met Jane, the manager of the Rockville IHOP, and was presented with the largest bag of toys he'd ever seen in his life. 

Jane manages the IHOP that typically raises the most money for LLS in the VA, MD, DC area.  Beat Cancer icons covered every available surface of the restaurant and hung from the ceiling, every table was packed to capacity.  Carson went around to various tables, posing for pictures, saying hello. 

Then Boxer from WMZQ came for a visit.  Carson posed for some more pictures with him, hung at his table to watch the pancake eating contest, and delivered cake to patrons who had made donations.

All this activity and royal treatment prompted Carson to ask me about a week ago "Mom, am I famous??"
Evidently, it all made such a big impression, he's still thinking about it!

 

Carson poses with Boxer and Jane at IHOP in Rockville.

Jane put them to work handing out cake right afterward.

 

 Carson and Boxer hand out cake.  At one point, Carson was heard directing Boxer to another table to pass out cake because "he would take care of the ladies".

Notice all the icons on the walls and partitions!

 Hanging with his new buds before the pancake eating contest

 This picture was posted on Boxer's Facebook page later that day, with hundreds of LIKES following!

 Next, we left for Falls Church IHOP, where Carson made another appearance, thanking visitors and posing for pictures with volunteers.  He was spent after that! I guess being famous really is hard work!

Posing for another picture with LLS volunteers at the IHOP Falls Church.

Thankfully, Carson was able to make it through the rest of the evening thanks to cake.  He'd managed to finagle the Boxer portion of the IHOP Rockville cake and bring it home.  I'm told it was "great" - as I didn't get to eat ANY of it.

Carson just can't get enough BOXER!

So, we had one happy day and one happy tired boy!  Carson could hardly believe he had to go to school the next day.

Thank you to everyone!

Oh, and here's a happy family from the day before at the pancake party.....

Happy to be a part of National Pancake Day, happy to celebrate Carson's end of treatment!

 

-Jennifer

National Pancake Boy - Part I

National Pancake Day on Tuesday was a blast for the entire family.  We will write more later, but here are a few pictures and links to some articles......

Falls Church News Press

Falls Church Patch

Spot on WJLA mentioning Carson

Carson on WMZQ website

Carson Hanging with WMZQ buds Boxer, Mark, Keaton and Tim

 National Pancake Day Collage.............

 Carson makes an appearance at IHOP Rockville with Boxer of WMZQ and

Jane Manning, IHOP manager.

Enjoy!

-Jennifer

Pancakes, Pancakes, Pancakes

Today, Carson and his entire class at Mount Daniel were treated to a Pancake Party courtesy of Falls Church IHOP.  This was a warm up event for National Pancake Day tomorrow.

Terry, the manager, decorated the tables, had goody bags for the kids and gave them perhaps the largest pancakes I've ever seen to eat.  After that, it was time for a pancake stacking contest!  It was wild, it was crazy and it was fun!  Thank you IHOP, Leukemia and Lymphoma Society and Mount Daniel!

 Preparing for the Room 11 arrival.  Francesca had the day off from school.

 Carson and one of his best buds, getting ready to eat pancakes.

 That pancake is outta here! Carson finished a pancake that was the size of his plate!

Over 400 pancakes were prepared for the pancake stacking contest.

 

 Almost ready to begin.....

(Just for the record, no pancakes were injured during the making of this video.)

 

 Finally, the big moment....Room 11 presents a check for $721.54 - money that they raised, mostly through collecting spare change- to the Leukemia and Lymphoma Society.  Little did they know, after all the coins were counted, the real total was over $800!  Way to go Room 11!

Don't forget to visit your local IHOP tomorrow for National Pancake Day!  Carson will be at the Rockville, Maryland location from 10 AM-12 PM.

-Jennifer

3 months off treatment

We are almost 3 months off treatment and Carson is going strong.

Our clinic visit on Friday provided information that he has gained about 2 lbs and is now about 50.8" tall!

Counts are high - he seems to be fighting a cold/beginnings of an ear infection - platelets and hemoglobin looking very good.

No concerns - YAY!!

We are looking forward to this week when we will help Leukemia and Lymphoma Society celebrate National Pancake Day at IHOP.

Carson's 1st grade class will have a pancake party at IHOP tomorrow and Carson will make an appearance on Tuesday at the Rockville, Maryland location to be a guest server.

He is excited and so are we!

In other news, Francesca and her high school swim team took home the District championship last night.  They were awesome!  Francesca won districts in every event in which she was entered....200 medley relay, 200 Individual Medley, 100 fly and 4x100 free relay!  All swimmers will be advancing to Regionals next weekend.  Good luck!

More later......Jennifer

Carson Tapes an Interview with WMZQ

Carson made his way to the airwaves this morning with an interview with Washington DC's top country station, WMZQ.  This was a lead up to IHOP's National Pancake Day which is coming up on February 5th to support the Leukemia and Lymphoma Society.  Don't forget, Carson's school is collecting spare change in support of this effort and you can help them out by Donating HERE.

Carson thought sitting in front of the microphone was waaayyy cool.  But when it came time to do the talking, he deferred his comments to Jennifer!

 Jennifer calmly explains Carson's Leukemia treatment - something I have trouble doing without losing it!

WMZQ's morning drive maestro Boxer poses with Carson and Francesca.

 

 Being so popular really tires you out!

Sometimes it's really difficult to express what we've been through and how blessed we truly feel.  So many people and organizations have helped us out.   We only hope that today we were able to return the favor and help those you helped us.  Hat's off to LLS and WMZQ.  Get the word out there guys!!

- Paul.

Two months

Two months out from treatment and Carson continues to grow stronger every day.  He is in fact, wearing us out with his new found energy and appetite.  The kitchen is never closed and our food bill is going up and up.  I remember how he did the same thing when he went from heavy treatment into maintenance.  Now that we are moving from maintenance into post treatment, I'm getting a better idea of what it is like to have a normal, healthy boy...YIKES!

Our next appointment will be February 1st and we're praying for more good reports.

-Jennifer