It's all about the Attitude

Carson's pesky ear infection from four weeks ago is back! Ugh. Naturally it decided to manifest itself with a fever on the afternoon of Christmas day. Off to the ER...again. This time, however, we hit it with three rounds of antibiotics instead of two. Tonight was our last round. Hopefully that will do the trick.

So here it is another Christmas...and here we are at another hospital. Although some things have changed from last year, many things remain the same.

For instance, last year at this time Carson was in the middle of heavy treatment and playing with cars. (See image 1.)

Image 1: Irrefutable photographic evidence that Carson was indeed in the middle of treat (notice the missing hair) and was playing with cars. (2009)

But this year different. This year we are in the middle of treatment (not quite as heavy) and playing with cars, BUT NOW WE HAVE HAIR! (See image 2.)

Image 2: Irrefutable photographic evidence that Carson is still playing with cars, but now has hair! (2010)

If it weren't for the hair, I'm not sure you'd have notice much of a change. And that brings me to the three lessons I have learned from watching kids battle cancer:

Lesson 1: Attitude.
Lesson 2: Attitude.
Lesson 3: Attitude.

Okay, that sounds like buying a house, doesn't it?

Thinking about where we were this time last year, I came across this short video from the hospital. Check out these kids as they run around the pediatric oncology ward, hooked up to IVs and no hair. Nothing will keep them down!

Boys will be boys - even when in the hospital and hooked up to IVs.
(Carson is the one in the black shirt with the nerf rocket.)

Carson and the other kids teach us through their attitude. No matter the problem, they are grateful for when they feel good and always find a way to enjoy every moment of every day.

And I really like that.

I Want More Happy Juice!

This past week marked the start of a new cycle in our maintenance phase...but not before getting to visit with Santa!

Monday night was the annual Teardrops to Rainbows Christmas/Growing Hope banquet. Okay, so I think it was really called a "Holiday" party. Except there wasn't any fasting (are you kidding?), nor was there a menorah. But there was a Christmas tree, traditional Christmas music, and visit from Santa Claus. Hmmm...it sure LOOKED and SOUNDED like a Christmas party.

I digress...what's important is that there was a banquet hall full of kids fighting cancer who were all being pampered for the evening.

Both Carson and Francesca stuffed an animal. Both picked a dog. Both picked the same style of dog. Both named their respective dog "Daisy." I bet they conspired to do this just so they could have more fights at home.

Prior to Santa's arrival there was music, dancing, and food.

Forget the sword, balloon guy, I want a gun!!

When Santa came they called each family's name one at a time. As each name was read an exasperated Carson let out a audible, "Awh!" that was loud enough for the whole room to hear.

I think this is the first picture of Carson and Santa where Carson doesn't look scared for his life! It's progress.

We finally got our chance, though. Carson got some Hotwheels (who'd a thunk it?) and Francesca an art set. A special thanks for Teardrops to Rainbows and Growing Hope for making this a super special evening!

On Thursday we started a new cycle in therapy - which means we had a spinal with chemo flush...which means we had Happy Juice (aka midazolam).

When the procedure nurse walked into the room Carson asked her, "Do you have the happy juice?" No. And when the doctor first walked into the room Carson screamed in excitement, "I want Happy Juice!!"

"Good morning to you, too, Carson."

The spinal procedure passed without incident. And when Carson came to he turned to the doctor and said, "I want some more Happy Juice!!"

We are extremely grateful for medicines like Happy Juice. But honestly, I see a Happy Juice intervention in our future!

Paul.

How Quickly I Forget

So it's been a while since I've posted to the blog. Slowly but surely I've been sucked back into the routine of life - which can feel good and comforting. Ah, the joys of meaningless meetings at work, kids fighting at home, the car in the shop, the roof repairs...the list of distractions goes on and on.

And that's just what all these things are - distractions.

Then it's another trip to the ER. Another child's funeral. A friend's child diagnosed with leukemia.

Oh yeah, every minute is a gift! I must be pretty dense to need reminders like this.

(Dear God, please help me to grow out of my denseness. I really hate getting these reminders!)

And then we came across this: A story of another boy who had leukemia. He went through two bone marrow transplants, neither of which were successful. Realizing his time was short, the family decided to celebrate Christmas in September. The family's actions inspired the town, and singer/songwriter Matthew West to write "One Last Christmas."

Watch Dax battle leukemia and how his community rallies around the family:

What a moving video! Of course it left Jennifer and I in tears. Some of the images of Dax looked like Carson when he was in treatment.

How quickly we forget - every minute of every day is a precious gift from God.

Paul.

Thankful

This year we are again thankful and mindful of the great blessings & great promises that God has given to us.

Here are but a few recent examples of God's gifts these past few weeks. There's a lot more gifts that have happened all year long; but I doubt you have time for such a lengthy blog!

We are thankful for those who were not afraid to "Be Brave and Shave" in support of Children's National Medical Center and the fight against pediatric cancer.

Gretchen, Jay, Nicole and Kimber - we love you guys!!! Clinic visits could be horrible,
but you make them something that Carson looks forward to!

Thanks Dr. L - Carson looks forward to seeing you too!
....and so do his parents!

Officer Tom, our special friend. Carson loves knowing a "real policeman"!

We are thankful to organizations like Growing Hope, who give a boy and his family a fun day to remember at King's Dominion.

Carson atop the ferris wheel enjoying a sunny day.

We are thankful to all those who've donated to the Leukemia and Lymphoma Society in support of Jennifer's efforts to run the Disney Marathon and the search for a cure. This week, as I learned about my friend's 7 year old son, diagnosed with Bcell ALL the day before Thanksgiving; I again realized that no parent should ever have to hear the words "Your child has leukemia". We won't stop until that phrase is erased!

By the way, the winner of the gym membership is........ Sue Earman! Thanks Sue for your donation (and being a great running partner to boot!)

What it takes to get a 14 miler in on a 32 degree day: Tights, running skirt stuffed with sport beans, new stability shoes (to keep the knee in place), long sleeved shirt, ear headband, hat, ipod, fuel belt with
gatorade and gloves!

We are thankful for birthdays!!! Some times we forget that life is, in fact, a gift from God in itself and worth the celebration. Don't take it for granted!

A teenager among us......YIKES!

Ice cream cake from Baskin Robbins - YUM!

Our thanks to you, our friends, family and readers! Your words, deeds and prayers have carried us through another year!
-Jennifer

Trying to blog

We have a million things to share, and things just won't seem to settle down. Thank goodness there is a holiday coming - maybe we will have some down time and an opportunity to update the blog in something other than "Reader's Digest" format.

This is what went on last week in the Kind household:

• a cortisone shot in the knee for yours truly
  
• a new roof installation
• the continued night time activities of the flying squirrels that have invaded our attic and seem too smart for the traps
• 2 children with birthdays
• a week long visit from my parents (who were a huge help amid the chaos)
  
• the "service engine soon" light coming on in the Mini
  
• a 3 hour visit Children's hospital downtown for Francesca to upgrade her insulin pump
• a 3 hour visit to the ER later that night(morning) with Carson for an ear infection
• a birthday party for Carson at the house
  
• a visit to our dear friends who lost their 12 yr old son suddenly in the overnight hours of Friday and Saturday
• a second visit to the ER on Sunday for more IV antibiotics for Carson
• and an evening at church to hear both children sing in their respective choirs

This chaos still beats the hospital any time any day!

Carson poses patiently for a picture before opening gifts.

Cupcakes!!!!! Need I say more?

Stay tuned for more photos!

-Jennifer

Blog Alert.....

We have had a lot going on here in the King household. More fundraisers, day trip to King's Dominion, swim meets, flying squirrels in the roof - and subsequent trapping of flying squirrels- washing machines breaking, physical therapy, cortisone shots, a little boy on steroids, you name it.

This is just a note to say, we will update soon. Stay tuned!

-Jennifer

Free Fitness Ending...

The chance to win a free gym membership will be coming to an end soon. There's still time to get in on this raffle though if you're interested. You have until midnight on November 7th. Just click here and receive one entry for every 10 dollars donated to Leukemia and Lymphoma Society.

Hope everyone is having a great fall weekend. Half of us are hanging at home, and the other half are at a swim meet.

-Jennifer

Clinic and Halloween

Here's a few photos from Halloween. We spent last Halloween in the hospital, so this year was terrific! Columbia had its annual Trunk or Treat complete with tons of candy, music and bounce houses. Carson went down early to hit the inflatables before everyone and their germs and had a blast! Unfortunately, when we went back for the actual Trunk or Treat he was already worn out. He lasted about 45 minutes and was done. He slept very well last night though!

Nona is here visiting and got to see the Halloween Parade at preschool on Friday!

Two firemen and a the unique "rapping swimmer" ready for Trunk or Treat.
Thankfully, there were no fires or drive by shootings during the festivities!

Saturday, our "fly girl" participated in a duel meet with North Baltimore Aquatic Club.
Both clubs brought their best of each age group - Curl Burke rocked!

Counts check at the clinic last Thursday was quick and easy. Well, the finger stick to get the counts wasn't easy, but we once again survived. Carson's ANC is a whopping 2000, hemoglobin good and platelets too. Despite a higher ANC than the doctors would like, we are still moving slowing with increases in chemo dosages. These next two weeks we'll increase the methotrexate to right around 100%, but the 6MP will stay right where it is at 50%.

Next clinic visit: November 11th. -Jennifer

Deep Thoughts with Jennifer

I get wrapped around the axle about the smallest things. I tend to focus on the here and now. I get stressed all the time. I lose perspective quite easily.

So, today's post is unusual for me. Bear with me while I explain.

We have been reading a book in church these last four weeks. It is The Family God Uses by Tom & Kim Blackaby. It has been a valuable study, a good reminder about raising a family that is grounded in the values of the Bible and a look at God's design and purpose of the family.

I admit though, I was pretty much going through the motions of the study, not thinking too hard about any of it. As usual, it takes a ton of bricks, to wake me up. Those bricks sure have a funny way of dropping at the most interesting of times.....

This is what I read "When God spares a child, it is for a reason". This is just one statement in an 180 page book, but I zeroed in on it. I started thinking about both of our children. I do believe both of our children have been spared by God, both should have probably died, but both are still here living happy lives. They are thriving in fact, despite their circumstances.

The book specifically mentions how Moses was saved from death when his mother hid him in a basket and floated him down the river, only to be found by the Pharaohs daughter. God protected Moses and he lived to lead Israel out of Egypt. I never thought about Francesca's experience being somewhat similar to Moses'. God took care of Francesca. He took her out of a circumstance in which she would have died and sent her where she needed to go to live. She is alive because of His protection. Think about this: We were living in a foreign third world country, we were almost not allowed to leave the country to go on R&R in the states. We flew out and about the same time Francesca was diagnosed with diabetes, Cote D'Ivoire was in the middle of a coup! Everyone had to stay in their homes under lock and key; there would have been no going out to the hospital with a sick child. She would probably have died if we'd have had to wait it out.

When we brought Carson to the hospital, he had an enormous white blood cell count (85% of which was cancer), almost no platelets, and no immune system. Yet he wasn't sick (apart from the cancer), he wasn't bleeding internally and no cancer cells had managed to migrate to his central nervous system. And now, SO FAR, we've had nothing but good news regarding his prognosis. Right now, his life has been spared.

And if I believe the author's statement about God sparing children for a reason, what is the reason my kids are walking around today??? What does God have planned for my children,??? How does he wish to use their lives to further his purpose? My kids may not grow up to lead countries, or be famous; but God has a plan to use them in some way. And, finally, what am I doing to make sure they grow up able to be used by God??

Serious business. The thing is, I should be asking those questions of myself with or without a brush with death. Something to think long and hard about for me. I need to focus on those questions above, maybe I won't get so stressed about small things, I won't lose my perspective. Axle?? What axle?

-Jennifer

Free Fitness

As if one blog wasn't enough, I started blogging about my marathon training on my Leukemia and Lymphoma Society TNT page. You can read about, and feel sorry for, all my aches and pains as I get ready for Disney. Then you can laugh about how you're glad you aren't the one doing it!

As my training continues, I'm still raising funds for Leukemia and Lymphoma Society....and I have another prize to raffle off for all of you who are local. It is a one month free membership to Vantage Fitness. This is a great time to win a free membership to the gym because the cold, yucky, rainy, snowy weather is coming. If you're like me, you'll want to be exercising indoors instead of outside and Vantage is a great place to do it.

Located in Falls Church, right on Broad Street, Vantage Fitness is a beautiful, light, bright, small and personal gym. I have been a member there for nearly two years, and have taken advantage of nearly all of their services. They have friendly staff, great fitness classes, babysitting and super smart trainers. Not only that, there is a massage therapist in house and a physical therapist too!

If you're the lucky winner of this raffle you will get a one month free membership to this great gym, plus you'll also have the registration fee waived. That amounts to a prize valued at $175.

The details: Donate through my TNT fundraising page between now and midnight on November 7th, 2010. For every $10 you donate, you'll receive an entry in the raffle. If you've already donated through my page, don't worry, you are already entered. But, if you choose, more entries are yours, with an additional donation! Those of you who haven't yet donated - get with it! You could win a gym membership for as little as $10! What a deal!

And if you need more inspiration to donate, just take a look at this......

All of these children have a blood cancer. Let's find a cure sooner rather than later!

-Jennifer

Another Week

Clinic
Carson was due for Vincristine(chemo) and Pentamadine (antibiotic) on Wednesday. That all went fine. His ANC counts were good - too good in fact. Guess what that means? Time for a change in the oral chemo routine! Sheryl Crow once sand "a change will do you good", but I don't think she was talking about medications for a near 5 year old. At any rate, Carson will continue on the same dosage of 6MP, but will go to full dosage of the methotrexate. This is yet another new dosage experiment and we'll find out how it plays out in two weeks. For now, we have a week off from the clinic because Carson started his 5 day burst of steroids and that will elevate his counts while he is on that.

Fundraising Update
A group of us had a Team In Training Happy Hour Fundraiser at a local restaurant, Ireland's Four Provinces, on Thursday. We had good attendance, great raffle prizes and a lot of fun. We are really thankful to everyone that came to the event and contributed to our fundraising efforts! Thanks also to our generous donors! And finally, thanks to Francesca, who developed writer's cramp while writing every one's name and phone number on their raffle tickets! We raised over $1,000 for Leukemia and Lymphoma Society! Way to Go!

Marina and Kathy get ready for raffle ticket sales galore!

Carson, of course, cared not at all about the fundraising. He instead spent nearly 3 hours playing all around the restaurant with friends Nils, Riley and Andy- he was too excited to even eat. Subsequently, he crashed when he got home and woke up starving the next morning!

How can anyone resist these face??? THIS is why we run!

Now, just in case you missed all the fun and excitement, or want to experience the thrill of donating yourself, it is not too late. Just look for the TNT logo on the right of this page and donate away!

Hope everyone is having a wonderful weekend!
-Jennifer

Fundraiser Reminder

Just a reminder that tomorrow, October 14th, is our Leukemia and Lymphoma Society Team in Training Fundraiser. Location: Ireland's Four Provinces, 105 W. Broad Street in Falls Church, Time: 5-8 PM. We plan to have a FABULOUS time!

If you can't make it, feel free to donate on line (see the Team In Training logo at right), or contact me via email if you'd like to purchase raffle tickets.

Here's a list of just some of the raffle prizes:

• (1) One hour massage from Deanna Staniszewski.......$95 value

• (1) One hour massage from Mei Acuna Arrington …...$60 value

• (5) Boxes of 4 gourmet cupcakes from Sweet Charity Cupcakes.....$12 value /each

• (3) One hour personal training sessions with Marina El-Ghoul of Vantage Fitness.....$228value

• (1) One month free membership to Vantage Fitness in Falls Church......$75 value

• (1) Chunky foil glass amber bead Necklace – 42".........$32 value

• (1) Gift certificate to Virginia Runner.....................$25 value

• (2) Gift certificates from Restaurant.com..................$50 value/each

There will also be a silent auction for a legal document package (valued at $1000) from Susan Earman, Esq.

See you there!!!! It will be a great evening!
-Jennifer

Ten, Ten, Ten

Our good friends Mark and Libby got married yesterday, on 10/10/10. Naturally, we managed to have a great time.


The ceremony was short and sweet; Carson managed to hold it together and be quiet. The reception was fun filled. Carson even danced, when he wasn't busy following Mark and Libby around, or trying to get our friend Chris to play with him.

Thanks for a wonderful evening Libby and Mark. May you have a beautiful life together!

The best part though.... seeing my family dressed up for a change, happy and well!




-Jennifer

Clinic Report

Carson's clinic visit went pretty much as expected yesterday. His ANC had risen considerably to around 1100. That means it is time to start the chemos again. This time there is a new plan though. He will remain on the same dose of methotrexate (currently at about 75% of what is called for), but the 6MP will be cut to the 50% dosage. They plan to keep the 6MP at that level for at least one month; and if counts hold, the plan is to only increase the methotrexate and try to get that up to full dosage. In a nutshell, they plan to move slower with any dosage increases and to only increase one drug at a time. Perhaps some day we'll find the "Carson dosage". At this point I would rather have a smaller dose every day than stopping and starting all the time.

Because his counts were high, Carson was "rewarded" with the flu shot. Poor guy! Low counts mean you stay home and away from people, high counts mean you get to take even more medicine.

Surprisingly, with all the happens to him, Carson absolutely loves the clinic. He is so excited to go on his appointment days that he constantly asks "when we go to clinic?" "I go play with Ms. Gretchen". "who's gonna listen to me when I get there?" (translation: "which doctor is going to do his exam - which includes listening to his lungs") It is a real credit to the clinic that with all the not so nice things they must do to children there, the kids still want to be there and they still make it fun for them. Obviously, there's some real special people working there and we are grateful for that.

Lots of great events coming up in the next few weeks which directly benefit pediatric cancer research and Children's National Medical Center.

Our friend, Officer Tom of the Arlington Police Department is participating in Be Brave and Shave which will benefit Children's National Medical Center. Lots of policemen and firefighters are receiving donations and will shave their heads to benefit CNMC on November 7th. Click here to donate. There's a great picture of Carson and Francesca with Tom there as well.

The CureSearch Walk on October 17th benefits the Children's Oncology Group (COG), a world wide organization of which the doctor's at the clinic are a part. The COG treats approximately 85% of all pediatric cancer patients. They are making huge strides in treatment for kids because they share information with each other and make changes as they discover what works best. If you want to learn more visit this link. Nurse Katie from the clinic is participating along with others that we know.

Thanks everyone for your continued prayers, words and deeds of support. They still mean a lot to us as we're on this long journey!

-Jennifer

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.

At the Beach

We made it to the beach and are having a great time.

Trying to get on the road always proves to be one of the biggest obstacles of a vacation. Jennifer had to get her stitches out of her hand. We had to get the dog taken care of. And poor Carson...all he could think about was getting to the beach. I have to admit, he reminded me of myself when I was young. He wanted to get on the road so badly, and mom and dad were still doing stuff around the house to get ready. He was so frustrated!

Anyway, we finally made it and Carson is absolutely beside himself. He screams with excitement at the top of this lungs when the water splashes on his feet or at the mere mention of going to dig in the sand.

This afternoon he went to the store for some shopping and Carson bought a new Ford Woody truck...and another mail truck. (Yes, we have an extensive collection of replica US Mail service trucks.) Thanks to a dear neighbor for supplying Carson with ample shopping money for his vacation. As you might have guessed, it was burning a hole is his little pocket and he blew it all on day one.

What we really need is another toy truck! Carson shows off his latest purchase - a 1949 Ford Woody. (As you can see, the infection around his nose is clearing up nicely, too.)

This evening we went on a "rocket boat" ride. Three or four times during the ride Carson leaned over and said, "I love this boat, Daddy!" And this is where I mention that I am one of those rare beach haters. I can't stand the hoards of people, the sand in everything, the overpriced goods...my list goes on and on. But, moments like this make it all worthwhile.

The rocket boat stopped for a few minutes to look at the dolphins. Obviously upset, Carson turned and remind us of our purpose for getting on the boat, "I want to go fast. I want to go fast!"

I'll write more about this later, but I need to throw out a huge thanks to Believe in Tomorrow for making this vacation possible.

Paul.

Close Call....Whew!

Carson visited the clinic today for a counts check and to let the doctors at the clinic get a view of his blistery nose, lip and eye.

• Counts low? Yes, ANC of only 600.
• Blistery nose, lip, eye? Probably impetigo.
• Contagious? Yes.
• Need to switch antibiotics? Yes.
• Need to hold his chemo? No, continue as before.
• Need to stay home from the beach? NO!!!
• Can you say Hallelujah?! YES!!

We have been really looking forward to this trip, so we are now even more excited.

At the beach we'll be guests of Believe In Tomorrow. A great organization that offers respite housing to families with children in treatment for serious illness. We have heard nothing but wonderful things about this place, so we will be packing up the Tahoe and headin' out!

We'll post again when we get there......

-Jennifer

Declan's Balloons

Written by Francesca

When Carson was in the hospital last, the one in May where he had a virus and low counts,our next door neighbor was a little boy named Declan Black Carmical, who wasn't even a year old. On August 18, 2010, Declan lost his battle with cancer. He was a little over a week shy of his birthday. Today, August 26 is his birthday. Declan has a twin named Cole. When you think about Cole's birthday, you cannot help but think about Declan.

On August 23, Monday, was Declan's funeral. Carson would be too loud and disturbing at Declan's funeral, so I got to stay home and watch him while my parents went to the funeral. When my Mom got home (my Dad went back to work) she said that they wanted us to release a blue ballon (blue, the color of declansjourney.com) and a gold balloon (the color for pediatric oncology awareness) on his birthday. So today, we tied a note to balloons that said "This balloon was released in honor of Declan Black Carmical August 26, 2009 to August 18, 2010 due to cancer please go to www.declansjourney.com". We let out a dozen balloons in honor of him.

Carson, ready to release a balloon for "baby Dec-a-lan in heaven" Carson is currently fighting some kind of cold sore/chicken pox like virus on his nose and just under his left eye. He is taking an anti-viral 3 times a day. Tomorrow's clinic visit will see if it is helping. We hope to be able to go on our beach vacation next week!

Please pray for Declan's family, because of the depression and sadness.
Go to www.declansjourney.com for more information.

In Training

I am officially in training for the Walt Disney World Marathon with Team in Training and the Leukemia and Lymphoma Society. I signed the papers, I've got the training plan, I've got my work cut out for me. I may be doing the work of running a marathon, but those doing the real work are the kids I see every week fighting cancer with grace and strength.

We went to baby Declan's funeral today and watched the hundreds of people there (us included) as they grieved. I am more committed than ever to making a difference - even if in a small way - to those who are dealing with cancer.

I've got some work for you too. I can't do this alone. To cross the finish line of finding a cure we need your help. Please visit my fundraising page and make a donation to LLS. Send the link to all your friends and ask them to donate too. Otherwise I will bug you endlessly!! Don't make me do this; just ask Paul, I am very effective at bugging people.

I am sure I won't have to bug YOU. So, let me just say, on behalf of all the kids fighting cancer, THANK YOU!!! Isn't that nicer than being bugged?

-Jennifer

Sadness

Our sweet little 10 month old friend, Declan, who had been fighting cancer since March, passed away early this morning.

Declan was our neighbor the last time we were in the hospital. Although, we did not get to know the family very well, we were instantly bonded by our fight with cancer. We were so excited to see Declan released from the hospital and at the clinic a few weeks ago. We welcomed his big smile and beautiful spirit. We were ecstatic to read his blog and hear about the wonderful days he was spending at home. But now, we are so sad and heartbroken that his life was so short. Although I know God has a plan, and I know Declan is no longer suffering; it is times like these that I always wonder how a loving, caring God can allow such pain.

And I always think "this could just as easily be us....." Cancer, go away and stay away.

Please pray for Declan's family today. Then, go and honor Declan's life by hugging your children. We are only stewards of God's little blessings; and their is no guarantee as to how long we'll have them.

-Jennifer

Clinic Visit Monday

We made our way to the clinic on Monday for a counts check and everything looked good. Carson's ANC was a whopping 1280 with white blood cells, platelets and hemoglobin also way up. He set a weight record too....19.4 kilos.

This lovely jump in the ANC (without the benefit of steroids) leads us to believe that maybe it was the bactrim antibiotic that was suppressing his counts somewhat. We have not had this high of an ANC count in a while and the only thing that changed from two weeks ago (when counts were too low) was the deletion of the bactrim.

Next clinic visit is August 27. Until then, we will do our 5 day burst of steroids (hunger already kicking in) and continue the 6MP and methotrexate dosages as before. We had the vincristine push on Monday, so we don't have to worry about that for another month.

Things are good. It is a nice place to be right now. Praise be to God!
-Jennifer

Another Milestone, Another Prayer

It's been 14 months since Carson's been to his Sunday School class at church. This morning, with his counts holding steady, we thought we'd give it a shot. Besides, it's August. There are a number of families on the road, and colds and fevers seem to be in a lull.

At least it seemed like a good idea to us.

Carson, on the other hand, was not too keen on our little plan. In fact, he countered with a major production straight from the whine and pout handbook. It was classic! It was just like taking a child to class for the first time.

And this was all before leaving the house!

So we finally got to church - late as usual - and our first order of business was to FIND Carson's class. (He moved up to a new class during the past year.) Carson was just about to start on an encore whine performance when his teacher emerged and asked, "Would you like to see our box of cars?" And with that he was hooked. He didn't even look back to say "bye."

Yes, mom and dad were more than a little teary-eyed and nervous. Jennifer held the pager in her hands during the service. She didn't want to take any chances and accidentally miss a call.

But, no page ever came. We picked him up an hour later. Of course he had a blast and can't wait to go back.

And while we celebrate Carson's return, we watch another patient from the Pediatric Oncology ward with great trepidation. Please join us as we lift up Declan and his family as they face the unimaginable. Read more at www.declansjourney.com.

Paul.

The Count

"The Counts" came in on Monday and Carson had an ANC of around 880. That's good news! We'll continue all his medications as we have been, only now we won't have to give him bactrim on the weekends. He'll have a once a month IV of pentamadine instead.

Next Monday Carson is due for a vincristine push and will begin a 5 day round of steroids. Didn't we just do that? I will have to stock up on chocolate bars and any other sweet he might crave during that time. I'm sure we'll also be visiting Joe's Pizza this week too. Anyone want to join us?

Francesca is at PVS Long Course Eastern Zone Age Group Championships today through Saturday. This is the same meet she swam at in early April in New York. This time, the meet is in Rockville, Maryland. She'll once again be swimming against girls from all over the East Coast, only this time she'll be swimming 6 events. The competition is fierce. We will report the results in a later posting. We don't know what to expect. We are ALL worn out from a long and busy summer swimming season.

No matter what the result though, we get a break after this! No workouts, no swim meets until September! Yea!

Things are good here, but we can't forget our "cancer family" of which we are now a part. We have several friends who are will be getting scan results in the next few weeks. Another is in the hospital and just had surgery for what appears to be a relapse. Please continue to pray for all these families and children.

-Jennifer

Another Week Gone By...

Visitors
We had visitors from Texas this week. Our house was bursting at the seams with four extra people, but everyone has had a great time; except Shade, who has spent the week under the bed hiding.

Here's pictures of some of the activities.

Ben and Francesca with Jefferson at Monticello.

Carson smiles when receiving the anti-aircraft "gun" complete with army truck all the way from Texas!


Carson then poses with Aunt Jeffere and "the gun"

Next, Carson proceeds to have Nona play "Army trucks with guns".
Last time I checked, they were still playing.

The "Changing of the Guard" at Arlington Cemetery.

Carson views the Changing of the Guard with great interest.

He was actually pretty quiet during the whole thing!

Francesca, Ben, Nona and Auntie take a break at Arlington.

Swim Meet
The weekend came, so it was time for another swim meet. NVSL All Stars. Francesca did great; she was 5th in the 50m Fly and 2nd in the 100m Individual Medley. We think this is an awesome finish for someone who is not a sprinter. No photos here at Francesca's request.
This week from Wednesday through Saturday we have Zones where Francesca will compete against 11-12 year old girls from all over the North East. Go Francesca!

Clinic
We have a clinic visit tomorrow to check the blood and get an IV of pentamadine (our new antibiotic). We are hoping for rising counts since Carson did not have bactrim this weekend. We shall see.

Hope everyone had a great weekend!! We are so thankful that we've had a busy, normal summer that did not involve a hospital stay. This kind of busyness is better than the other. We don't complain about it one bit!

-Jennifer