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.

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.

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

Green Goggles

It only took a year, but Carson was finally able to put his green swim goggles to use!

The story of the goggles begins last year - two weeks before being diagnosed with leukemia. He did get to wear them in the water once or twice, but he really never was comfortable with them. Heck, he never really had a chance to break them in!

Last week Carson was finally able to put those goggles to good use.

Carson, in 2009, models his new green goggles for the camera. Finally, in 2010, he puts them to good use. Note his general puffiness (especially his neck) in the 2009 photo - a result of leukemia. Little did we know how sick he was at the time.

Two years ago Carson would go under water, albeit very briefly. Last year he was able to take a few lessons, but was then spent a good deal of the summer in the hospital. This year we are back to basics. He has even been afraid of getting his face wet. So, last week he spent an hour each day taking swimming lessons - which he thoroughly enjoyed!

Speaking of swimming, Francesca is swimming at the Junior Olympic meet starting tomorrow (Thursday). The meet continues through the weekend...yes, that's four full days of swimming. Oh, yea, I can't wait!

Paul.

Hair Report

Carson continues to do very well. He has tons of energy, which he uses to ask tons of questions about everything. Looking at him now, you can't tell that he is a cancer patient. We don't get any stares in public places any more due to his bald head and pale, thin appearance. Those days are gone for now. The only stares we get now are towards the weird mother who scrubs down everything he might touch with a sanitizing wipe and yells "Don't touch that! Too many germs"

Check out Carson's hair transformation below. They are in order, from a few days after diagnosis until present. The last picture was taken yesterday.

Hope everyone had a super holiday weekend!
-Jennifer

The Speeches

I wanted to put these in the previous post, but for some reason the video upload feature wasn't working. (Where's an IT person when you need them?)

Although I've call these "videos," in reality they are for audio purposes. The video is that bad. In fact, I think it's more apt to call them Audios...just without the Spanish accent.

The lights in the stadium were "dimmed" (aka turned out) for the ceremony, leaving all of us (and my camera) in the dark. In Jennifer's audio you may see a blob of light moving around from time to time. She had a flashlight so she could read her speech. Turns out she's more animated than she thought.

So here is Jennifer telling our story. It's a little over seven minutes long (and I accidentally clipped off the last sentence and applause), but it is well worth your time.

And here is Delaney, a 15 year-old leukemia superstar! Listen as she recounts her diagnosis and relapses. Again, my "stop record" trigger finger accidentally clipped off a sentence at the beginning when she mentions how she admires her older brother and always wanted to play soccer just like him.

What Delaney doesn't mention is that after her last diagnosis she had a bone marrow transplant. That's six months in the hospital, folks. Her brother, the one she admires so much, was a perfect match. What an amazing story!!

I think they both did an AMAZING job. Talk about strength. Every time I tell our story, I always end up bawling my eyes out.

Paul.

Bragging And Laughing

Paul finally edited some of the video from Saturday. Watch as Carson comes alive with laughter thanks to an in-home performance by Nancy Worcester and "Waco". Seriously, there were times when we thought he might crack a rib or something.

After going through so much, it's nice to see Carson having such a great time.

Brag Session

Well, it has been like a whole week since we've bragged on Francesca and her swimming, so we are overdue. If you don't want to hear us gushing with pride, well...here it comes anyway. :-)

Zones...Here We Come!

A week and half ago Francesca participated in the 14 & Under Junior Olympics in Maryland. Swimmers at this meet come from all over the Potomac Valley Swimming Association and have to make qualifying times in order to participate. It is a championship meet and there is a morning session (prelims) and a finals session.

It was a LONG three days, to say the least. Francesca swam 6 events and had to swim every event twice because she made either the A or B Final in all of her events. She also swam two relays- one of which got first place. It was a test of endurance and Francesca came through. She placed in the top 16 in all of her events, had many personal best times, as well as a few learning experiences. Her her best finishes were the 200 yard breast stroke where she finished 4th and the 200 yard butterfly where she also finished 4th.

Speaking of the 200 yard butterfly, Francesca's time in that event was fast enough to place her in the top three fastest times swum this year in all of PVS. This qualified her for the PVS Zone Team which will compete in Rochester, New York this Thursday-Saturday. The best from all Potomac Valley Swimming teams will now compete as one team against other Zone teams along the East Coast. It is another great opportunity for Francesca to experience tough competition and quite an honor to make the team.

Posing in her regional team warm-ups - check out those threads!

Way to Go Francesca! Swim fast this Weekend!

-Jennifer

Jedi Knights of the Oncology Clinic

Carson made back to the clinic on Friday for another round of chemo. He continues to do well, although he's really tired.

We are often asked if we get tired of going to the clinic so frequently. Sometimes we do, but amazingly many times it's something to look forward to. Except for the "pokes", Carson seems to enjoy going. Like the hospital, the clinic is one of the few places where he can (sometimes) play with the other kids. And at four years old, it's all about the playing!

Here are some highlights from our visit this past Tuesday:

Check out Carson, Riley, and Elton as they train for their next Jedi mission.

Paul.

Rocket Attack

Carson finished up his HDMTX chemo treatment last night and has been on a fluids flush ever since. Despite the nasty medicine, he has maintained a big appetite and high energy levels. We'll see if that holds true over the next few days.

In the meantime, this is how we spend our free time:

Watch as Carson and the gang use rocket launchers to protect the oncology ward. (Uh, guys, I think you could use some more time on the practice range.)

If you are thinking we must not be having "tubey" or port issues because I haven't complained about them yet, you'd be wrong. True to form, tubey is already acting up and proving very difficult to for blood draws. Right now I'm praying we can make it through the night without having to re-access. More than that, Carson is close to clearing the residual chemo out of his blood. A better prayer would be for good enough numbers that we can simply take tubey out and go home!

We'll see what tomorrow brings.

Thanks to everyone for the help and the prayers!!

Paul.

Francesca Grows Gills

Well, as you might have guessed, Friday came and went and we are still not in the hospital. Carson's ANC was a hair below what was needed to start the next round of chemo.

Not to say we were terribly disappointed. Francesca was slated to race in the Tom Dolan Invitational Swim Meet, which is one of the biggest meets of the year for the swimmers in the area.

Watch as Francesca overcomes parental embarrassment and goes on to swim her best times ever!

Not having the hospital hanging over our heads, we were able to spend more time cheering Francesca on to seven - yes, SEVEN - new personal records. Way to go Francesca!!!!

As for Carson, we are heading back to the clinic on Monday morning and expect to be heading to the hospital for round 2 of HDMT immediately afterwards. Of course, we were thinking the same thing last Friday...and the Monday before that, too.

Whether we head back to the hospital tomorrow is really inconsequential. The HDMT will be waiting on us for whenever we show up. The important thing is Carson is feeling amazingly well. He is eating all the time...not as much as when he was on steroids, but a lot nonetheless. He is playing and talking nonstop. And even though that can be annoying, we love it.

Every day is a blessing.

Paul.

Hanging Out at Home

Day 142 of our 1,278 war on leukemia.

So much for making plans. We headed off to the clinic this morning expecting to get a fast pass to the hospital to start the second round of high dose chemo (HDMTX). And then that pesky ANC thing came up again. Haven't we had this lesson before?

Let's see...last week Carson's ANC was something like 3,500. That was a week after the HDMTX treatment. This week Carson's ANC was 350. Uh...excuse me? What the heck happened? We need an ANC of 750 to start the next round. Well, we've been giving Carson small doses of oral chemo during the week. Well, apparently that was a little stronger than everyone expected.

So...unpack the bags. Now we are hanging out here at home for a few more days. We'll go back to the clinic on Friday and give it another shot.

What a beautiful weekend!

We all had a great Thanksgiving and weekend. Jennifer and I thought about catching an early morning sale on black Friday. Ha! Yeah, right.

Watch as Carson and Francesca turn into zombies playing Dirt2 on the Playstation...and then as Francesca takes Shade to play in the dirt...for real!

We did get out, however. Carson has been outside playing like a mad man. And on Saturday afternoon Francesca, Jennifer and I took Shade to Fountainhead Regional Park. (Shade is our adopted 5 year old German Short-hair Pointer.) Shade had a blast getting outdoors and running on the trails!

We are keeping busy and having fun until the next round. Keep the prayers coming!!

Paul.

Birthday Wish

Surprise!

Francesca's actual birthday was on Wednesday, but we celebrated at home the Sunday before. It's hard to believe that she is 12 now! Does anyone else feel old at hearing this???

Twelve years ago, Francesca surprised us all by arriving in mid November instead of mid December. This year we managed to surprise her with something she's been wanting for quite a while......check out the video to see what she received.

Happy Birthday to You and the Big Birthday Gift

Swimming
And now it's time for a long overdue brag session about Francesca's swimming. Two weeks ago she swam at the National Age Group Championship, a meet she was specifically selected for by her coaches. She turned in another great performance, chopping 4 seconds off her 100 Breastroke, 5 seconds off her 500 Freestyle, 4 seconds off her 100 Fly and 2 seconds off her 200 Individual Medley. She finished in the top ten in all her events, swimming against the "best of the best" from teams in Maryland, Delaware and Virginia. Way to go F!

Shall We Stay Another Night?
Carson is still feeling pretty good after his Monday chemo, however; we'll be staying in the hospital at least until tomorrow. The level of methotrexate needs to be less than 0.1% before he's allowed to leave the hospital. Today it was 0.18%. Almost, but not quite good enough.
The next labs will be drawn at 3 AM. For those of you who read this tonight...let's pray the level has dropped.
-Jennifer

Armored Cars to Big Wheels

Carson had a great birthday...or should I say birthdays. Plural. We celebrated Sunday at home with cupcakes and opening of gifts. Then we celebrated at the clinic with the nurses on Monday morning. Then we celebrated again at the hospital Monday evening. How can you top that?!?

Some of the loot this year's festivities: a highly desired Tonka Armored Car (aka Money Truck), a remote control car (currently driving the nurses mad here in the hospital), a big wheel (also driving the nurses mad here in the hospital), a train set (a gift from the nurses before he started driving them mad with the rc car and big wheel), and a hummer concept truck. And that's just for starters. It was all way cool stuff!!

The nurses are disconnecting Carson's chemo as I type. So far, so good. No major problems to report. And that's exactly the kind of news I like to report.

Thanks to everyone for making Carson's birthday so special. Go Carson!!

Paul.

P.S. I should have mentioned...just because we are unhooking from chemo doesn't mean we are going home quite yet. After chemo there is a fluids flush. Then there's a "rescue" drug, which as I understand it, keeps his blood from turning to goo. (Ok, I have a rudimentary conception of how things work biologically.) Bottom line: we are here for a couple days more.

Getting out of the House

125 days since diagnosis...1,101 days to go!

Let's see...it's a sweltering 53 degrees outside and it's been raining for the past three days. We need to get out of the house...BAD! Carson's numbers are better, but we still need to be careful. The mall is definitely out of the question...too many people in too close of quarters. Where can we go where there's somewhat of an open layout (so you're not packed in shoulder to shoulder with people), but is still indoors?

Carson goes wild at the Udvar-Hazy Air and Space museum.

We started to make a list of possible places to go, but could only come up with one possibility...the Udvar-Hazy Air and Space museum at Dulles airport. So, we ventured out and had a great time. Carson was so excited to see all the planes and helicopters. He shrieked with excitement and ran from exhibit to exhibit.

After seeing all the planes we snacked at the McDonald's in the museum...where Carson commandeered my ice cream cone! All the excitement finally caught up to him on the ride home. He hasn't had this much fun in a long time.

Paul.

The Medicine Ball

Day 119 of our war on leukemia.

It has been GREAT to be home from the hospital. Carson's appetite and activity level shot up through the roof. Although still somewhat tired from the 8 days on "lockdown", he has loved being able to get outside, visit the neighbors, and ride around on his hog.

One of the stipulations on coming home early was that we would have to give Carson IV antibiotics every 8 hours for almost a week. Okay...we can do that. I had this picture in my mind of carrying around a long IV pole all over the house. Up and down the stairs. Outside. Ugh. However, I'm happy to report that (as usual) I was WAY off base!

Step-by-step instructions for administering IV antibiotics at home...as demonstrated by an almost 4 year-old

On Wednesday Carson returned to the clinic - his ANC was up to 240. By Friday he was up to 490.

What's coming up

Of course we can't let him get too well...this is a war and we've gotta kill off those cancerous cells! Our next appointment is Tuesday. If his ANC is up to 750 (and we expect it will be), then we're off to the hospital for a big round of chemo. Hopefully our stay will be a fairly short one - only a couple of days.

This will be the first time he has had this chemo...and it's going to be a heavy dose. Please pray things go smoothly and that he doesn't have any adverse reactions!!

Paul.

Hog Wild in the Hospital

Carson's ANC today was a whopping 31. Much better than 9, but still not great. The good news is we were able to get out into the play yard for a bit and ride like mad. Of course, that was followed by more of the same...inside.

Carson dominates the play yard and hallways on his hog, then helps with his antibiotics.

Even better news is that Carson's monocytes are on the rise, albeit only slightly. Monocytes are a precursor to rising neutrophils. So, seeing a rise in this area is promising for his ANC.

Until then, we will be hanging out here at the hospital. Thanks for all the comments...they are very much appreciated!!

Paul.

Still Waiting

Breaking Records Again....

We thought we would be going home today, but that will not to be the case. Carson, again, broke his own ANC record of 21. His ANC is now ZERO. A BIG, FAT, ROUND ZERO. The Dr. says we must stay here until the ANC is about 150, so we could be here quite awhile longer.

Meanwhile, we are coming up with ways to entertain ourselves. Racing the plasma karts, doing many, many laps around the ward with the big wheel, handing out candy to nurses and other patients, and watching movies. Did you know the Hematology/Oncology ward is a race track? They have it measured out....21 laps around the ward is a mile. I'd say we do that by noon each day!

Unscheduled vacation.....

Francesca is having an unscheduled vacation/home study opportunity. Her school has started sending multiple students home with suspected swine flu. Francesca was vaccinated for H1N1 on Saturday, but we fear she hasn't built up immunity yet; add to that, Carson and his non-existent immune system, and I predict disaster. So....the school agreed that Francesca should complete her assignments at home.....at least for this week.

Help on the way....

Paul's mother will be arriving tomorrow. She's agreed to come out of retirement and teach Francesca until she goes back to school. That was not something she had planned on doing when she agreed to come up here and help. I'd say leukemia has us all doing things we'd never planned on!

Go Fireman Carson!

Fighting leukemia one day at a time. Day 92 of our 1,278 day treatment plan.

If there was every any doubt about Carson's future profession, I think yesterday's open house at the fire station sealed the deal.

First of all, a HUGE thanks to the fire fighters of Arlington County Station 6 (Falls Church Fire Station) who laid out the red carpet and gave Carson the VIP treatment. Figuring Carson would likely have a low ANC count - which he did - the fire station graciously agreed to let us come early to beat the germ ridden crowd.

We arrived about 20 minutes before the official opening and were greeted by a score of fire fighters - all eager to show Carson around. The fire trucks, sheriff vehicles, and all the cool equipment were all out on display. Carson had the run of the station and he was chomping at the bit to see everything. And see everything we did!

Station 6 ROCKS!!

I am in awe and completely humbled by the attention we received. The crew of station 6 bent over backwards to make sure Carson had an outstanding time. And they didn't just succeed...they knocked it out of the park! Thanks guys!

Carson checks out all the fire trucks, then goes for a RIDE in the pumper truck!

A personal behind-the-scenes tour of station 6, the ride in the pumper truck, playing with the lights on the ladder truck...it was sensory overload. For once, Carson was speechless. Don't worry, Motormouth is back to talking today. In fact, I bet he'll be talking about this for months to come!!

No Germs Allowed

Carson's ANC last Thursday was a whopping 350...way below the 1500 normal minimum. His ANC will most likely continue to drop over the next couple of weeks as we finish our the consolidation phase of treatment. We are already avoiding crowds...and this will continue.

Back to the Clinic on Tuesday

Tuesday we are back at the clinic for another round of chemo and the dreaded PEG-Asparaginase injections - one in each thigh. Since his appetite has picked up, so has his strength...which means it's getting tougher to hold him down. We are NOT looking forward to the PEG injections. Poor guy.

Please pray things go smoothly on Tuesday! Go Carson!!

Paul.

Energy to Spare

Our war on leukemia. Our 84th day of a 1,278 day treatment plan.

Just a quick note to share the highlights of the past few days.

• On Wednesday Jennifer had to take Carson back to the clinic...tubie wasn't cooperating. The nurses worked their magic (as usual!) and they did their chemo and were out in a matter of minutes.

• On Thursday Carson was back at the clinic...as scheduled...for chemo and blood work. Unlike Wednesday, tubie was very uncooperative and the nurses had to break out the heavy guns to coax it into working again. All went smoothly once tubie started working again...EXCEPT, Carson's hemoglobin turned out to be low.

• On Friday Carson was back in the clinic once again...this time for a blood transfusion. Ugh! Thankfully the transfusion went smoothly. No reactions. Carson was up and around during the whole process. Usually he sits around and watches a movie. Yeah, not this week. This week he was up and moving around the entire time, talking and playing nonstop.
  

Today we spent the morning at a fund raiser walk for Growing Hope. We saw a number of the nurses and staff from the clinic...even a few friends came along to join us. I'm not sure if it was the transfusion or not, but Carson had more energy than a case of Red Bull. I swear...not only was he was all over the place, his jaw was moving nonstop all day long. Carson's been in bed for a couple of hours, but my ears are still ringing!

The important part is that Carson and Francesca had a blast today. Hey...we met up with friends, climbed all over a train car, played on a tractor, and had the pizza buffet for lunch. What else could you ask for?!?

On Monday Carson heads back to the clinic. Next week is basically a repeat of this week...please pray things go smoothly and Carson continues to do so well.

Paul.

A Week Off!

It was another good day around here for Carson. We went to the clinic this morning for blood work and chemotherapy. Today's chemotherapy included a spinal aspiration and chemo treatment, an IV push of Vincristine (another chemo), and two inter muscular shots of PEG Asparaginase (yet another chemo - given as one shot in each thigh).

As usual, Carson received his "happy juice" before the procedure. That stuff must be great because he was asking for it way before the procedure was to begin!

Three good things happened at the clinic today.

• The bloodwork came back good. Carson did not need a blood transfusion, his platelets were good and his ANC is now over 1,000. That's a lot better than 40! See what a few days off of chemo can do? Time with no chemo; time for the body to build back up.

• They did the IV push and PEG Asparaginase shots while Carson was still feeling the effects of the sedatives. He cried, but was quickly over it. At home, he said, "Why do I have band-aids on my legs?" He doesn't remember a thing.

• We are not scheduled to return to the clinic until September 8th. That's a week off from chemo! YIPEE!

After the clinic, Carson was feeling great, so great that he asked to take "the hog" out. This has not happened since the day after he got home from the hospital! He rode down to the church (about a block away) and rode over the speed bumps several times.

After tackling the speed bumps, he rode back to the cul-de-sac and conducted his self-appointed responsibilities as parking monitor - noting that the big Mercedes has wipers ON the headlights and that the old Volvo has a wire hanger as its antenna and mudflaps in the correct places. After all that excitement, he got tired (who wouldn't?). Paul carried the hog home and I carried Carson.

We continue to be thankful for good days like this!

-Jennifer