Catching Up & Clinic

We've been so busy these last few weeks. Here are a few other events that have happened......

Goodbye Acura! We purchased a 2009 Mini Clubman.
It is our mid life crisis car. Francesca is hoping it will be her 16th birthday car.

My friends Kathy and Jennifer ran the Woodrow Wilson Half Marathon with me on September 19th. I tried to break 2 hours, but alas, a hill around mile 11 did me in. I finished in 2:02.10 instead.
Next event? Disney Marathon! -at least it is fairly flat!

Carson had a great time at the Growing Hope Walk and Family Fun Day. The dunk tank was especially exciting! Not only that, nearly $30,000 was raised to help families of children with cancer!

And the Clinic says.....
Tuesday's clinic visit revealed that Carson's ANC was below 500, making him very prone to infection - AGAIN! All his chemos have been stopped -AGAIN and he will be staying out of public (and school) - AGAIN!

We will go back next week to see if counts are up. If they are, we'll start chemos back at 50% of the dosage-AGAIN!
Some day, maybe, we'll find the dose that suits Carson best!

-Jennifer

The Winner

Thanks again to everyone for your generosity in supporting the Leukemia and Lymphoma Society through your donations to Team In Training.

Here's some examples of the power of your donations......

A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.

A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.

A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.

A donation of $150 provides financial aid to blood cancer patients to use during treatment, regardless of income, diagnosis or duration of treatment. This money can cover everything from transportation to and from treatment to the cost of a bone marrow transplant.

You guys are making all this possible!!! THANK YOU!!!

And now, back to our scheduled blog......the winner of the free massage, a $95 value, is (drum roll) SARAH KING! Congratulations Sarah! Let me tell you, you have not received just any old massage; Deanna has the ability to relax every muscle she touches, to work out even the tightest knots and kinks and leave you feeling like a completely new human being. Enjoy it!

For those of you that didn't win, there's still something for you too. Deanna has graciously offered to give everyone that donated a massage for just $50! That is nearly a 50% discount. So, give her a call today and set up an appointment. You will be VERY glad you did!

Deanna Staniszewski, NCBTMB Certified Massage Therapist
703-314-8797
803 W. Broad Street, Suite 240
Falls Church 22046

-Jennifer

Last Chance!

Just one last reminder......Only 2 hours left! Donate to the Leukemia and Lymphoma Society via my fundraising page and you'll be entered in a drawing to win a massage. No amount too small!

Thanks so much!

And I promise....a real blog entry coming soon!

-Jennifer

Donation Nation

Thanks to all those that have donated to Leukemia and Lymphoma Society. Thanks to you guys, I've reached my initial fundraising goal!

Don't forget, the drawing for the free massage from local massage therapist, Deanna Staniszewski is still on. You can donate ANY amount between now and midnight on September 27 and be entered in the drawing.

Thanks so much for your support!!! Have a great weekend!

Jennifer

One Year Later

On Saturday morning Carson and I were on our way to pick up Francesca from swimming - yes, swimming has started back up - and as we were driving we were contemplating what we were going to do for the rest of the day. We were, in fact, in the unusual position of not having any scheduled activities for the day. No swim meets. No places to be....

And then, as we cut through the backstreets on our way to the pool, we passed the city maintenance yard...and they were putting out "Open House" signs.

Open House? We had totally forgotten!! And just like that, we instantly knew what we were doing the rest of the day - climbing on backhoes, honking the horns on dump trucks, turning on the lights on the snow plow, working the levers on the front loader...the excitement in the car was palatable. And, of course, Carson had a great time.

This fall we've been thinking a lot about what we were doing last fall...here's a comparison in pictures:

Check out those toothpick legs and fuzzy head! Carson tests one of the garbage trucks at the 2009 Falls Church Property Yard open house.

Fast forward a year...no mask, a full head of hair, and beefy legs. Carson poses for a photo (but is really checking out the bobcat parked in the back corner.)

Then, on Sunday we went to a birthday party for Carson's friend Heather. Heather and Carson share a special bond - they were diagnosed the same day and were frequently in the hospital together. On Sunday Heather celebrated her first birthday post treatment.

Heather and Carson get together outside the hospital in October 2009. (Both got sick and, due to low ANCs, ended up in the hospital within days of this photo.)

Heather and Carson take a break from the pool on Sunday afternoon at Heather's first birthday post treatment. What a beautiful sight!!!

What a difference a year makes. Thank you, Lord.

Paul.

Start of Maintenance Round 3

Today marked the start of round 3 of our cycle on maintenance. The start of each 85 day cycle includes a spinal tap, chemo push (IV), and an hour long antibiotic infusion.

Happy Juice

You know how sometimes you put off telling your child something if you think they're not going to like it? Or, maybe you're the type that stretches the truth a little? Jennifer and I've kinda been in that boat with Carson regarding the start of this next cycle. Although he's lightly medicated and not suppose to be able to remember it, Carson hasn't been too fond of his more recent spinal taps. And who can blame him? He knows that they hurt, but the medication keeps the experience somewhat fuzzy. He's not sure why he doesn't like the spinal procedures.

We broke the news to him last night. He had only one question, "Will I get Happy Juice?"

Now, Happy Juice is a powerful sedative that tends to give Carson the giggles. It's also know as N-phenyl-N-(1-phenethyl-4-piperidinyl)propanamide...or fentanyl. (Happy Juice is much easier to say.)

But when Carson heard he'd be getting Happy Juice, he started cheering and running around the room waving his arms in the air. So this has us thinking: Are we fighting cancer only to raise a drug addict??

Meanwhile...back at the clinic.

Carson made counts this week with an ANC of 900. He made it through the spinal procedure, too. It's never fun. He was talking and giggling, at first. The tears and screams came shortly later. Like the other times, he doesn't remember too much about it. He knows that he cried, but not the specific act that caused it.

As with the past visits, he recovered quickly and was talking ears off in no time. And for that, we are always thankful because deep down we'd much rather be at the clinic doing spinal procedures than back in the hospital facing something much worse.

We are truly blessed. And our prayer tonight is one of thanks...and a request that Carson doesn't continue to seek Happy Juice, or any of its illicit relatives, when he's older.

Paul.

Need a Massage?

NEED A MASSAGE????

Most of you know I'm in fundraising mode for The Leukemia and Lymphoma Society. See the cute TNT icon that Paul put up on the side of the page? Use it......use it often, use it whenever you think about me out there on the trails running, and running, and running.......

Need something more? Like a massage? Here's something for all of you in the Washington DC area- a chance to win a massage!

Deanna Staniszewski, an NCBTMB certified massage therapist is donating a free massage, valued at $95, to one lucky winner that donates to Leukemia and Lymphoma Society on my behalf in the next two weeks.

I recently had a sore area between my shoulder blades and Deanna fixed me up right with just one terrific massage. She is super, knowledgeable, friendly and conveniently located right in Falls Church City on Broad Street.

Visit my fundraising page and make a donation between now and September 27th at midnight Every time you donate during this time period you'll be entered in the drawing to win this massage..... for you, or to give as a gift to someone else. It's all for a great cause, so feel free to give generously! Don't worry if you've already donated, just donate a few dollars more and you'll be entered to win. Every dollar helps support LLS and no gift goes unappreciated.

If you have any questions, you can contact Deanna directly at 703-314-8797. Don't miss out!
And...thanks in advance for your donations!

-Jennifer

Fall Is Here!

The weather doesn't really say "fall" today, but school has started; so I guess it is right around the corner.

Francesca started 7th grade yesterday. Her response when asked how school went on the first day was, "OK". I will take that as a "school was great today and I'm excited to be back"! :)

Francesca wears a swimming shirt, letting everyone know what she did this summer.

Carson started Pre-K today. He'll be attending 3 days a week for about 3 hours. He seemed to have a good time, but was very, very tired when he got home. He ate and I put him promptly to bed for a nap.

Nothing but the finest duds for the first day. The El Camino Shirt!

Yesterday's clinic visit was pleasantly unremarkable!! Carson had a great ANC count - 1200! and all his other numbers looked good. The impetigo is gone and his biggest problem is which car to play with next.

We are so thankful to have those usual kinds of problems -tired kids, hectic schedules, what's for dinner? They are indeed a blessing!

A sweet deal:
If you're in Georgetown this month on Thursdays and Fridays, pick up a special Heroes Cupcake from Georgetown Cupcake. 100% of the proceeds will benefit Heroes Against Childhood Cancer, a volunteer-driven organization that supports the Center for Cancer and Blood Disorders at Children’s National Medical Center in Washington, D.C. where Carson is treated.
Click here to learn more. and Enjoy!

-Jennifer

What Hurricane?

Our first vacation since diagnosis was almost interrupted by Hurricane Earl. Almost.

Although there was a lot of hype, Earl turned out to be a non-event in Ocean City. Yes, the wind picked up, the waves were big, and the beach was covered in sea foam. But other than that, it was just a normal day. People were out. The stores were open. There were even joggers heading up and down Coastal Highway.

But first, on Thursday, while everyone was scrambling around in preparation for Earl, this is what we were doing:

Carson and I started an open pit mine, which was an amazingly smooth operation...until the tide came in.

We had a great time horseback riding at a beautiful farm in Berlin, Md.

Francesca says horses are her new passion and she's ready to move. I don't think our neighbors would like it if we kept a pony in the backyard of our townhouse!

And if horses were not enough, Carson found a tractor to climb on. (Talk about a dream come true!) Sydney, our neighbor here at the Believe in Tomorrow house thinks it's cool, too.

On Friday we braved Earl's breeze and visited the Wheels of Yesterday Museum.

We checked out the wave action down at the beach. Some of the waves were coming up to the base of the dunes, which was a great deal farther than normal.

We headed down to the Boardwalk.

Francesca has always asked for a yellow Hummer. Down at the Boardwalk, I delivered!

See? I told you it was all about the food.

We continue to be amazed at the compassion of others. So many here have come together to make this a special time for Carson and the rest of our family. We are truly, truly thankful.

Paul.

Vacation - It's all about the Food

Taking the fight to leukemia for 418 Days and counting...

Crabs, Crabs, everywhere

Our vacations center around one thing and one thing only - food. Ocean City is awash with establishments offering crabs. Practically every street corner is home to a crab house of some kind. Many times there are even more than one. And I found all of this odd. Growing up "inland" in Texas, I don't recall BBQ restaurants adorning every corner. What's the fascination with crab?

On Monday evening the Believe in Tomorrow group dined together at Hoopers - one of Ocean City's renowned crab and seafood restaurants. Carson was having a blast before we sat down - but that had nothing to do with the crab. Hoopers had a Dale Earnhardt NASCAR racing car as a centerpiece inside the restaurant. So, we spent most of the evening examining every detail of the car.

It's a miracle we ever made it to the table.

But we finally sat down, ordered drinks, and started in on the Seafood Feast and Ribs. (Anything described as a "feast" and then adds "ribs" is definitely targeted advertising to our family!) We had the boiled shrimp, fried clams (or were they muscles?), ribs, hush puppies...and then came the crabs.

BBQ vs. Crabs - is there really any contest?

And this is where I take issue with seafood. Crab is good, but it is WAY too much work for such little reward. Do you have to work that hard for BBQ? No. Do they have hammers on the tables at your favorite BBQ joint? Well, they shouldn't. My point is BBQ is a delicacy worth breaking a sweat over, but you don't have to. Why bother with crab?

Swimmer Boy

On Tuesday we took a much needed rest from the beach (yes, I was still complaining about the sand) and we headed to the pool. Carson spent the morning trying to refine his swimming by paddling up to the pool bar. (I guess this is where I should add that Believe in Tomorrow does NOT have a pool for the children, instead we use the hotel pool across the street - thus the swim-up bar.)

Carson continued refining his stroke until he finally said, "Let me go!" and swam across the pool. So, after starting swim lessons in June 2009 - a few weeks before his cancer diagnosis - we finally got there.

Like turning on a switch, he was off. He swam over to mom. He swam to the ladder. Then he said, "I want to go to the deep end." So we went and he swam across the deep end.

Carson took a really good nap on Tuesday.

Italian Rules the Day

Those of you who know us, know that when it comes to Italian cuisine we are somewhat particular. Well, okay, we are SNOBS. (There I said it.) Four years of living in Italy - even though it was a long time ago - left us jaded. As a result, we don't try that many new Italian restaurants.

However, when Wayne, the Believe in Tomorrow - Ocean City Program Director, described the authentic Italian restaurant a few miles to our north, we thought we'd give it a try. And, boy, are we glad we did.

Carson and I scarfed down Margarita pizza cooked in the wood-fired oven and topped with freshly shaved parmigiana. They even had roasted peppers as one of the toppings - one of my favorites. But the real treat of the evening was when we were done eating and then the manager invited Carson into the kitchen to make another pizza. (I have some pictures to upload, but don't have the adapter to get them off our phones...so look for those next week.)

If you are ever in the area, you definitely want to stop by Mancini's. You'll be glad you did.

Okay, so strolling on the beach in the evenings is actually kind of nice...even for a beach-hater like me.

Captain Carson

Wednesday started off with a boat ride around the bay and down to Assateague seashore. It was a beautiful journey on a gorgeous day. Captain Dave, a long time resident and avid fisherman, knew exactly where to take us and was an awesome tour guide!

We saw wild horses on Assateague Island. No, Francesca, we can't take one home!

Capt. Dave and First-Mate Carson pilot the boat around the numerous sand bars in the bay. Carson would like to point out that we also saw police boats and a tow boat, too.

So, it's Wednesday evening and Carson is still having a blast. Although, he is getting tired of having to get in the shower three times a day to wash off the sand. It won't be too long and he'll be a beach-hater like me. :-)

Paul.