Celebrating Christmas and Preparing for Round 4

We had a great Christmas. Jennifer's parents and brother celebrated with us and spent gobs of time playing with Carson and Francesca.

Just as expected, when it came to presents, Carson and Francesca made out like a bandits...as they should. Santa brought a Secret Service play set for Carson, complete with an Air Force One and a presidential limousine. It took us a while to figure out the puzzle of Chinese packaging, but we were finally able to liberate the limo so it could be used as a jump obstacle for the monster trucks.

Santa didn't have to bring the monster trucks. Those came with the boy.

Francesca made out with a couple of nice coats, among other things. Jennifer got a new coat. Even I got a new coat. Hmmm...do you detect a trend here? Although we suffered through last year, it seems as if none of us can find our coats after moving back from Florida. Now we are a step closer to acclimating in our "new" environment.

In medical news, Carson is doing well, although the first few nights after coming home from the hospital were rough. Shortly after getting home he developed sores in his mouth and throat - a side effect from the chemo. A runny nose exacerbated the problem at night making for some not-so-fun nights...and tired parents. However, now we are on an antiseptic mouthwash and antibiotics and things have improved considerably.

Yesterday we made our way to the clinic for our follow-up visit and all was well. Our next appointment is Monday, and if things are a "go" we'll head to the hospital to begin our fourth and final round of HDMTX.

We are forever grateful for the many cards, gifts, food, comments, and most of all, prayers. I can't begin to express how much they mean or how much they help. Suffice to say I don't think we'd get by without them. Thank you.

Paul.

Christmas Miracle Deja Vu

We are home again!

Our Christmas present this year is Carson coming home on Christmas Eve. HDMTX treatment number 3 finished up without much fanfare...and that's just fine with us. Carson again tolerated his nasty chemo concoction amazingly well.

A big thanks goes out to the doctors for bumping up his treatment by a day. Because of that we are able to spend Christmas Day at home...opening presents and doing all the crazy-fun things that kids should be doing on Christmas.

Ten years ago today.

Talk about deja vu. Christmas Day ten years ago we were in Texas and it was Francesca who was being released from the hospital.

A flashback to ten years ago today when we were caring for another sick puppy. (Check out those glasses!)

The amazing part is this...we really weren't suppose to be in Texas. This was 1999. Remember all the "year 2000" hoopla? I wasn't suppose to take leave. But, we were living in West Africa at the time. We weren't worried about all the computers in the world crashing, the electrical grid coming to a halt, or the water treatment plants shutting down. Heck, that was daily life for us! So, despite the travel restrictions put in place that year at work, my boss let me take leave for the holidays.

By the time we were admitted to the ER in Texas, Francesca was unconscious. Then we were told her blood sugar was 850...uh, just "slightly" higher than the normal 80 - 120. I was hoping it was from too much Sprite...but it was diabetes.

Francesca, barely two years old, was quickly transferred to the Pediatric ICU at Medical City Dallas where she spent two nights getting her blood sugar under control. Those were two long nights. There were only 12 or so beds on the ward...and a child died each of the nights we were there.

Once hooked up to fluids and insulin, Francesca sleeps for almost 24 hours.

At one point while in the hospital I switched on the tv to catch up on the news...only to learn that a number of soldiers had taken control of the city where we lived in Africa and there was shooting in the streets. It was a military coup. Had we been there we wouldn't have been able to get Francesca to the hospital...assuming the hospital there could have helped anyway.

Do we believe in divine intervention? Do we believe in miracles? Heck yeah!

Two Christmas miracles are at home with us this year, plus the celebration of another miracle - the birth of Jesus. Enjoy all the miracles in your life today because every day is a blessing from above.

Merry Christmas!!

Paul.

Start of HDMTX #3

Day 163 of our war on leukemia.

We did most of our digging out on Saturday...during the storm...and thank goodness we did. Otherwise we would have been digging for hours on Sunday. Depending on which weather report you believe, we received somewhere between 16 and 20 inches. The good news is we made it to the hospital at 9am, just as planned.

Loading up to head to the hospital.

A view of the outdoor play area. Uh, I don't think we'll be heading outside anytime soon.

Carson is concerned for the poor toys covered in the snow. Most can't even be seen!

When we arrived at the hospital we found nurses, doctors and administrators who had not been home since Friday. These same people did Carson's spinal on Sunday (usually these are done during the week), so we could start chemo a day early and have a chance to get home on Christmas Eve. Thanks guys for arranging this and letting it happen!!! 10 years ago we spent the 21st-25th of December in the hospital when Francesca was diagnosed with diabetes. Christmas in the hospital is not an anniversary we'd really like to repeat.

Fast forward to today. Things are going well. Carson is feeling great and eating well. We will finish chemo tonight around 9:00 tonight; then begin the waiting for the methotrexate level to get to less than 0.1%.

-Jennifer

Digging Out

Things have been quiet around the house the past few days...sort of.

We had a change in grandparent help on Wednesday. It took Carson a good day or two to finally remember to begin all sentences with "Grandma", not "Nona". And with as much talking as he does, that's a lot of wrong name calling.

Then this morning the big snow storm came. We spent the day either inside eating or outside digging out. And then there was more digging out...and then even more digging out. And tomorrow, before we can do anything, I'm sure we'll have to dig out again. The snow along our sidewalk is now waist deep.

Why did I sell the snowblower?

Tomorrow we are off to the hospital for round 3 of the HDMTX chemo treatment. However, before starting the chemo Carson will be having an LP (lumbar puncture to flush his spinal area with chemo) and a blood transfusion.

Please pray we can get to the hospital and that things will go smoothly again. Thanks!!

Paul.

Meeting with Santa

156 days into our war on leukemia!

Carson has been feeling really good. His energy level is...well...that of a normal four year old boy. He's so active you'd think they were pumping Mountain Dew into his port. For the record, this is not the case.

We went to the clinic today for a check-up and blood work. Carson has developed mouth sores - a common side effect of the chemo. Fortunately they don't seem to bother him. We now have a special mouth wash to help speed up the healing process.

Check out the fuzz on my head! With a longer period between treatments, Carson's hair is starting to come back. So far it's darker and coarser. However, it'll probably fall out again before we're through.

The big news of the day was Santa made a visit to the clinic and brought Carson a present!!! Carson looks a little timid in the picture here (okay..he is), but he warmed up later on. In fact, we ended up stalking Santa around the clinic after the doctor was finished with us.

Overcome with excitement...and feeling a little intimidated by the big guy in the red suit!

Thanks to Growing Hope for the gifts and for making today a special one for all the kids fighting cancer!

We are heading back to the clinic on Friday for more blood work. We may even need a transfusion of the red stuff. If everything works out we'll hopefully head back to the hospital on Sunday to start round three of HDMTX. We're shooting to start or Sunday so HOPEFULLY we can get out by Christmas...otherwise it'll be Monday, which means we probably won't get out before Christmas.

Paul.

Officer King Sent Home!

Even though hospital staff claim that Officer Carson King is being released only because his methotrexate level is below 0.1%, rumors persist that King is being discharged due to the friendly fire incident he was involved in earlier this week at the hospital.

In an obvious attempt to dodge the question, when asked for comment, Officer King remarked that "Santa bring me presents and we go to McDonald's". He then exited the building accompanied by his entourage which included his mother and grandmother, both of whom claimed he would be taking a nap as soon as possible!

-Jennifer

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.

Start of Round Two

Day 150 of a 1,276 day treatment plan...and going strong!

Carson's ANC on Monday was up to 930, so off to the hospital we headed for round two of our high dose chemo treatment.

Every time we come to the hospital we run into friends...and this time was no different. Before we even got a room we ran into Heather, and soon after met up with some other friends, too. They played hard - riding around the ward and running into people and things. Watch out!

Heather and Carson show off their syringe squirt guns...moments later they attacked me!

One of the preteen boys demonstrated to the younger gang members how to make squirt guns with syringes. Yeah....that wasn't such a good idea. You could see the little motor turning in their brains. Moments after the kids figured how that worked and each went through their mental checklist of what to squirt, nurses and parents were running for cover all over the ward.

The kids here are no different than anywhere else - they love to play. Lucky for me I had another pair of pants to change into!

So far so good with the chemo. Please pray that continues!

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.

Real Men Bake

When the going gets tough.....

The tough get baking!? Did I read that somewhere?... maybe not. Carson and I have been hanging out at home waiting for his ANC to rise. So, we've been baking (and eating!) Christmas cookies to pass the time.

Carson has also been delivering cookies to the neighbors on his big wheel. I need to put his Santa hat on next time he's out as a "livewy man". That's a "delivery man" in Carson speak.

Friday we hopefully head back to the hospital to start our next round of chemo. At least we will have plenty of goodies to bribe the nurses and doctors with once we're there. If we haven't eaten them all by then.

-Jennifer

Carson working his magic in the kitchen!

Carson declares himself a "Good Cooker" by eating his creations.

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.

Slap up side the head Thanksgiving

Day 137 of our 1,278 day war on leukemia.

Thanksgiving is a special time of year for reflection. Some years it's a gentle reminder that there are others less fortunate. And other years it's a big slap up side the head, serving notice that we are always supposed to be thankful...even when things are their worst.

This year we got the big slap up side the head and kick in the groin version.

Nevertheless, we are so incredibly thankful. Even though things seem to be at their worst, we know we are blessed beyond compare. We are thankful in so many ways. Let's see...

• The doctors and nurses that care for Carson have been absolutely wonderful. Rush Limbaugh claims "talent on loan from God." He's got nothin' compared to these guys, and they're helping us!
  

• We have had various family members staying with us basically since Carson was diagnosed, taking on the role of surrogate parent...cleaning the house, picking up kid number 1, etc. Live-in help is totally awesome! Truth is, we would be in a serious world of hurt without them. Thanks moms!

• I can't say enough about our friends and neighbors. Meals. Lawn help (Lord knows I'm no green thumb!). Meals. Chauffeuring services. Meals. Tons of cool gifts. We have been totally humbled by the outpouring of support...to the point of tears of joy. You guys sustain us from day to day. Did I mention meals? Okay, just making sure. I'm a pig.

• Francesca. She has sacrificed more than any parent should ask of a child, yet she continues to help...and does so with a loving heart. Francesca, you are the greatest sister ever!!
  

But most of all we are thankful for the prayers. Not only from our own church family, but from from many others as well. We can't thank you enough. It's you guys who call in the big guns to lift us when we can't walk ourselves...which is fairly frequent right now.

Thanksgiving is certainly special this year, and this year we are incredibly grateful. My only hope...my prayer...is that through our story, your Thanksgiving is more special, too.

Paul.

Back Home

Day 133 of our war on leukemia and still going strong!

After spending most of the day Friday at the hospital waiting on a blood transfusion, we made our escape and headed home! Our first in-hospital chemo treatment pretty much took a full 5 days. The bright side is Carson didn't have any severe reactions. "Severe" being a relative term, though. Chemo is tough stuff, and by the end of the week you could tell it was wearing him down. He lacked energy, his appetite dropped considerably (we call it the "hospital hunger strike), he ran a low grade fever and complained of his head hurting for several days.

Francesca shows off her Playstation driving skills to a young spectator. Moments after this photo was taken the first fight broke out. Ah...it's nice to be home!

The good news is we are home and free of the 24-hour commotion of the hospital...leaving Carson and Francesca time to create their own commotion. By the time we unloaded the car with all the "stuff", Carson and Francesca were on the couch with Playstation console in hand. Ah.....the simple pleasures!

We have a week to rest up and enjoy Thanksgiving...then we get to do it all over again!

Thanks to those who supported us through prayer and food during this latest hospital stay. We couldn't make it through without your help!

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.

Carson's Birthday...in the Hospital

Take Two

Carson's ANC today met parameters for the next round of chemo, so off we went to the hospital (again). After a long wait, we were admitted, hooked up to fluids and, finally, late tonight, started the first high dose methotrexate treatment. This is the experimental phase of his treatment and provides higher doses of chemo on a less frequent basis compared to the standard treatment plan.

Naturally we are more than a little concerned. There are all the natural "chemo" related side-effects. Carson has handled the previous chemotherapy treatments with amazing decorum...and we pray the same will be true with this new treatment.

But being in the hospital didn't distract us from the more important issue of the day: Carson turned four today!!

It's a blessing to be going through all this at such a young age. Carson doesn't know what's going on with all the medical stuff. And honestly, he couldn't care less. What's really important to him are family and toys. And today that balance was tilting strongly toward the "toy" side of the equation! Despite being in the hospital, he had a great day.

Happy Birthday Carson!!

Paul.

P.S. I know...I didn't upload any pictures or video of the birthday celebrations. Hang tight...they're coming.

And thanks for all the continued prayers. We can feel them!!

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.

Start of Interim Maintenance - Kinda

Day 123 of treatment...and eating like a trucker.

Start of Interim Maintenance

Yesterday we started the third phase of treatment -Interim Maintenance (IM). For this phase we will be following the protocol of a new study. The difficult part is we'll be doing high dose chemo treatments every other week for the next two months. Each treatment is administered over 24-hours and requires several days in the hospital.

On Tuesday we went to the clinic to get accessed and have our blood count checked. All looked good - Carson's ANC was up to 780, just slightly higher than the 750 required for the high dose chemo treatment at the hospital.

We immediately left the clinic and went to the hospital where Carson had his spinal area flushed with chemo (another part of starting IM). This, of course, was done with the help of some "happy juice"...which Carson was looking forward to. We are fortunate to have some really awesome meds. Carson remembers absolutely NOTHING about the spinal procedure!

After the spinal procedure we were admitted to the Pediatric Oncology ward upstairs. Weren't we just here? We said "Hi" to the nurses - whom we all know by name. The difference from last week is this time we got a huge room! Yeah!!

The Snag

But then we ran into a bit of a snag. The hospital drew more blood and, according to the hospital's pathology, Carson's ANC was only 680...NOT high enough to start the high dose chemo.

Not a problem. The ANC is close. All the indicators are there showing it will come up soon, so the doctor says we'll just wait this out. By morning we should be fine, right?

Fast forward 12 hours and here I sit staring at the report from this morning's blood work. At the bottom of the page is a handwritten note in red ink, "ANC 576". What?!? It's falling??

Now What?

So, now we are on to Plan B...or is it Plan F? Whichever, the plan now is to try this again on Monday. Ugh. Monday, November 16th, happens to be Carson's birthday. Now it looks like he'll be spending his 4th birthday in the hospital getting some really nasty chemo.

Not exactly what we were hoping for. Hopefully the presents will make up for it.

Thanks for all the prayers!!!

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.

Home Again!!

We are home again!! Of course, there was some drama involved, but we are home nonetheless.

Carson's ANC jumped to 115 this morning. We thought this would be enough to get our ticket out of Dodge, but this was Monday. On Monday there's a shift change in doctors making rounds on the ward...and the new doctor advised that the target number for discharge was really 250.

Our sails went from fully stretched to complete slack in a fraction of a second. Ugh.

We pleaded our case. Carson holstered his laser gun and put on his most angelic face. The doctors conferred. And in the end, we were given our pass and arrived home around 5 this evening. Yeah!!!

This is just a breather...we know we will be heading back to the hospital in about a week as we kick off the next phase of treatment with a heavy round of chemo.

Thank you for all the prayers!!

Paul.

Halloween on the Oncology Ward

Day 113 of our war on leukemia.

Halloween on the Pediatric Oncology ward was substantially subdued this year...at least that's what we were told. Now that the hospital has been transformed into H1N1 Flu Central, all activities that bring patients (or their germs) in the vicinity of one another are strictly prohibited. Chalk up Halloween as another victim of H1N1!

Our plans to hit the popular Trunk or Treat sugar fest at church were replaced with a walk down to the nurses station and a small goody bag delivered to our room by Child Life. This was accomplished with a surgical mask in place and no other kids around. Pretty boring stuff for an almost four-year-old! Carson definitely enjoyed dressing up as a Fireman, but it was short-lived.

Fireman Carson removes his surgical mask for a brief photo op, then makes cute overtures to the nurses in hopes of scoring some good candy.

On the other hand, Francesca did make it to trunk or treat. She had a pretty good haul and a good time on the velcro bounce house.

Francesca dons a velcro suit hoping the candy will just stick to her.

So here we are the day after Halloween. Our diabetic daughter sits with a bucket of candy she can't eat (at least not much). Our son with cancer thinks he wants candy, but in the end doesn't eat it. So where does the candy go? Mmmmmm.

Carson's ANC was a whopping 30 today. Our goal of simply going home seems so elusive. Keep praying for Caron's ANC to go up...and quickly. We are going stir crazy. We need to get out of here!

And I need to go run off this candy!!

Paul.

No Go...as in No Go Home!

Day 112 and going strong...despite still being in the hospital. Ugh!!!!!

A warning to all who enter Carson's room. They should also include a warning that visitors may be targeted with a Nerf dart gun!!

Carson's ANC this morning was 20, but his monocytes increased to 6%. Okay, neither are really anything to write home about. In fact, they both stink. If you are thinking to yourself, "Hey, yesterday's ANC was something like 31, why the heck is it going DOWN?!?" Well, I'm not so sure there's really any difference. I don't know what the official margin of error is, but I'm pretty sure we're wallowing around in it.

Francesca was dis-invited from the hospital today...again. No one under 18 is supposedly allowed. Whatever. At this point, I don't care. Let them throw us out!

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.

ANC Update

NINE.

Carson's ANC is NINE. This is not the jump we were looking for. Dr. now hopeful we can leave this weekend. On the upside, Carson is feeling good; the challenge is keeping him occupied.

Encouraging comments welcome.

-Jennifer

ANC

ELEVEN!

Carson's ANC is 11.

Tune in tomorrow for another exciting installment. We will still be here in the hospital.

-Jennifer

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!

Pesky Bacteria!

106 days of fighting leukemia.

We are still in the hospital. Carson is in great spirits and he's responding well to the antibiotics. His blood cultures have come back clear of bacteria since late Friday and he's been relatively fever free since then, too. However, his pesky ANC is still below 100...which means he really has NO immune system. Zippo. So, if we can keep the bacteria clear, the fever away, and get the ANC to come up (which it will in time), then we can go home. Hopefully that's not too far off.

Not as Fun

Our stay in the hospital this time around hasn't been nearly as "fun" as our stay in July. The flu epidemic has changed everything. Because Carson is so vulnerable, we are basically on lock down in our room. Although we did do a few laps around the ward today, we've been strongly discouraged from leaving the room. (In fact, we were basically told not to, but we did anyway.) And if/when we do leave the room, we are all sure to wear our stylish surgical masks.

In addition, visitation rules have changed. Visitation is only for a few hours each day, and younger visitors are not allowed. Even Francesca has been dis-invited.

The make up of the patients on the Hematology/Oncology ward is somewhat different. With an overflow of flu cases in other areas of the hospital, part of the ward is now home to non-flu pediatric cases. I guess if you think about it, this is a really good thing. If there's room for other not-so-serious pediatric cases, that must mean there are fewer cancer cases. That's definitely something to be thankful for!!

Paul.

There's a Bacteria Among Us

Day 105.

We are still in the hospital..and probably will be for a couple of days more. Leukemia tried a new weapon on us - a bacterial infection. Who knows where he picked it up from. Fortunately, however, we have weapons in the form of IV antibiotics to fight this one off. In fact, as of this morning he was clear of infection and his fever was gone. He just needs to stay clear and fever free for 48 hours.

From his perch high above the citizens of Fairfax, Carson surveys his domain.

Carson and I spent most of the Thursday night (early morning Friday) in the ER. Just like the last time we were in the ER, the doctor called ahead and we were promptly escorted back to a private room. It sure helps to have connections. Heck, I didn't even have to flash my Golden Syringe Platinum membership card!

Seriously, we know we are blessed to be able to get such great help so quickly. The folks here have bent over backwards to help Carson.

Breaking Records

As of this morning Carson's ANC had dropped to 21...which is a new record low for us. And looking at his blood work, it's going to be a while before that comes up. Yesterday Carson had a blood transfusion. Although his hemoglobin came up, his platelets (which we just received a transfusion of on Tuesday) are already dropping again.

I'm going to go out on a limb here and predict more transfusions in the near future, probably before we leave the hospital.

Good Times Before the Hospital...

On Thursday Heather came over to visit. Heather and Carson were both diagnosed with cancer on the same day and were in the hospital together for a while. Now they see each other on occasion at the clinic.

"Skinheads" take over the court!

Carson and Heather had a blast riding around the court and looking at Mr. Bob's "no top" Mercedes. Thanks Mr. Bob!

Thanks to everyone all for the messages of support and love!!

Paul.

Hospital

We are in the hospital sooner than expected. Carson began running a fever in the wee morning hours. His ANC has dropped to 39, so he has absolutely no resistance to any germ that might be out there. Paul took him to the ER, while I stayed home to get Francesca off to school. Carson was admitted this morning and we'll probably here at least until tomorrow. He has had two rounds of IV antibiotics so far.

He doesn't have the flu. He doesn't feel too bad. He just has the 100 degree temperature and needs a blood transfusion as well. We are waiting to see if blood cultures reveal anything. He is not happy to be here. Please pray that we get home tomorrow!

-Jennifer

Last Week of Consolidation

Blood, Blood, Blood

The blood always determines how our week will progress. If you did indeed bet that Carson would need platelets on Tuesday, you were right!!

What else did the blood tell us? Carson's ANC has now plummeted to 70. So, we're sticking close to home - at least until Friday. On Friday we go back to the clinic because Carson's hemoglobin is on the low side. It is suspected he'll need a blood transfusion by then - so we can anticipate another highly energetic boy over the weekend!


And now another brag session on Francesca.....

Francesca continues to have a terrific start to her swim season. Last weekend she had another swim meet where she continued to drop time in nearly all of the 9 events she swam. Her swims qualified her for the Tom Dolan meet at George Mason University in December and the National Age Group Challenge Meet at the beginning of November.

The National Age Group Challenge is a select swim meet held in Maryland. Only about 35 people on the 400 person team were chosen for this meet. Francesca has been chosen two years in a row to represent the team. Way to Go! With everything else that's going on around here, Francesca continues to amaze us!

Francesca readies herself for a great race.
(She's on the second closest starting block)
This shot is from the Harvest Moon Invitational.

What's in Store.....

Now that we're done with Consolidation, it will soon be time to start Interim Maintenance and another round of anxiety. Please pray for Carson as he enters this phase. We will be dealing with several hospital stays, a new combination of drugs and preparation for radiation.

-Jennifer

Day 100 and Counting

Going strong on day 100!

That's right. Today is our 100th day of fighting leukemia...can you believe it? Is it just us, or does it seem like we've been doing this for years? It sure feels that way to us. In reality, though, we are just getting going. Jennifer and I were talking just the other day about this. We were trying to remember what Carson was like before diagnosis. Life pre-leukemia seems so long ago.

To mark our centennial milestone we are forwarding on some random thoughts on the things we've learned in the past 100 days:

• We can now speak a different language - we speak leukemia. We can rattle off medical terms and talk of blood abnormalities with impressive ease.

• We can crush, dilute, and flavor medicine...and then expertly squirt the concoction into Carson's mouth at just the right angle so as to minimize the after taste. Thank goodness there is such a thing as Hershey's strawberry syrup. And thank goodness Carson likes it!
  

• Ports and tubes are great inventions for administering medications without IVs, but can still be problematic. We have the problematic version.

• 'Roid rage is not a myth!

• Carson is one tough cookie!

• Even when things look there worst, there's always something to be thankful for.

• The doctors and nurses have been absolutely awesome! When it comes to the billing departments, however, most have vast room for improvement.

• Special note to Inova Fairfax Hospital - the company you guys use for pathology can't seem to get a single bill right...and they are totally rude! In fact, they are so bad that when you call them up this is their first menu option: "If you are calling from an attorney's office, please press 1." No joke.

• DONATE BLOOD and PLATELETS!! It goes to real people who really need it. We are using it...as are a number of other kids.
  

• We've learned how to blog. (Although some may say that is debatable.)

• Don't think too far ahead; each and every day is a blessing.

• Our family, friends, and church have been the pillars of our support. People have poured out of the woodwork to pray and provide support for us. We are forever grateful. Without them, I don't know where we'd be.

• Leukemia sucks. Cancer sucks.
  

Carson enjoys a "picnic" in front of the fireplace. When's it going to warm up?!?

For our 101st day tomorrow we are going back to the clinic. Carson is already talking about it...looking forward to it, in fact. He will have his port accessed, his blood checked, and receive chemo. Over the past day or two we've noticed a bunch of small bruises on his legs...which means his platelets are probably low. If I were a betting man, I'd put money on getting a platelet infusion tomorrow.

Paul.

P.S. Yes, I realize CENTENNIAL refers to 100 years...and it feels like 100 years. Truth of the matter is, I don't know what 100 days would be called. Centdies? Centediei? Heck if I know! Any scholars out there know that one?

Rain, Rain Go Away

Just a quick note to say that Carson is still feeling good, with plenty of energy. He's eating well and playing constantly. The only problem is this cold and rainy weather we've been having since Wednesday. We are still avoiding public places as much as possible. Carson's ANC wasn't wonderful on Tuesday (just above 600), but it wasn't as terrible as it has been. Since indoor play areas are out and in general, so are play dates, we've had to come up with other activities. We raided the video store yesterday and today we've resorted to riding the bicycle and "hog" in the garage. I think the weather is supposed to start improving on Monday. I hope the forecasters are right!

Francesca and Paul are at a swim meet in Laurel, Maryland. They were there last night too, fighting the Friday afternoon traffic to get there. I will do swim meet duty tomorrow. Swim Fast Sissy!

Tuesday is Carson's next scheduled chemo and then we will be done with the Consolidation phase. Next comes "Interim Maintenance", which will last about 6 weeks. Carson is scheduled to enter the hospital several times during this phase for a high dose of methotrexate.

Keep us, and especially Carson, in your prayers before, during and after that time. Another phase, another unknown.......

-Jennifer

Platelets plus more!

Day 95 of our war on leukemia.

Tuesday's Clinic Visit

We showed up at the clinic on Tuesday expecting a shorter day. After all, we were receiving an IV push and two shots, how long could that be? Oh yeah! Those darn platelets! They were low, so our day was extended by a few hours.

As it turned out, it is no big deal, at least for Carson. He has grown extremely comfortable with his visits to the clinic thanks to the great staff and Ms. Margy and Ms. Gretchen "the play ladies". There is almost always something going on and something fun to do.

Here's how Carson filled his time:

• Hand out candy to patients and nurses with Ms. Gretchen.
• Play the Wii, located in the teen lounge.
• Take a break, get platelets while watching E.T. and eating pizza, corn dogs and pretzels. Thanks for the pizza Margy!
• Wait an hour to see if there is a reaction. Watch E.T. some more and visit with Heather! She's home from the hospital and will now be getting her treatments at the clinic. We're looking forward to seeing more of her!
• Play the Wii some more. Watch Mom and Dad attempt to play Wii baseball.
• Take a break, do something not so fun.....get two intramuscular shots in the legs. That was tough, but Ms. Gretchen gave him a new Seek and Find book. The shots are quickly forgotten and the hour we wait to see if there is a reaction is filled with looking at the new book. Thanks Ms. Gretchen!
• Play Wii some more.
• Get an IV push (10 minutes max). Deaccess the port. Arrive home just before Francesca gets off the bus from school.

Despite the long hours yesterday, it was a great day. Carson had no reactions to the platelets or the shots. We got to see and visit with Heather & her mother. We are not scheduled to go back to the clinic until Tuesday of next week!

In other Happenings

This weekend, while also enjoying a visit from Grandpa and Grandma, Francesca won the overall 11 year old girls Half Moon Contest at the Harvest Moon Invitational in Herndon, Virginia. She swam 6 events over two days placing in the top 3 in all of them. This was enough to give her the fastest total time and the title of champion! Way to go Francesca!!!

Francesca proudly shows off her trophy kickboard

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.

Success!

Our 89th day in the battle against leukemia.

Carson is still going strong. He is full of so much energy. Is there caffeine in chemo?? And did I mention how LOUD he talks? I'm thinking he could be an honorary member of Spinal Tap. See this 3 1/2 year old? He goes to 11.

Chemo at Home

Hats off to "Dr. Jennifer", who successfully administered chemo here at home on Tuesday and Wednesday! In addition to chemo, Jennifer is also the one who is dealing with most of the clinic visits, sorting out the insurance mess, and entertaining the boy that never rests. Talk about a full time job. Ugh. Fortunately, Jennifer is awesome!

Carson and Dr. Jennifer were back at the clinic today. We figured it would be a quick trip...get another does of chemo and take tubey out. But, we thought wrong. Carson's hemoglobin is already lookin' like it needs to be topped off again. So, he's off to the clinic again tomorrow for another blood transfusion.

Despite being loud and full of so much energy, Carson is still super sweet. He's in a good mood...most of the time. (Hey, he IS 3!) I'm amazed that he can go through what he's going through with such a great spirit.

Go Carson!!

Paul.

Playing Doctor

Playing doctor....No, this is not one of THOSE kind of posts. That would be some other blog...not one about our kids who happen to be around doctors and nurses ALL the time. When you're constantly around these things, it is bound to come out in play time. More later on this subject....

Chemo Update
Carson began another 4 day round of chemo on Monday. He is still feeling great and full of energy. To top it off, we managed to give the 2nd day of chemo here at home without incident - YIPEE! Of course, we did have to visit the clinic twice on Monday (once to start the chemo, then once to fix his access site which he'd managed to rip out while turning over in bed). I guess that cancels out our non-clinic visit today. Oh well. Tomorrow we give chemo at home again and I fully expect another new "tubey" adventure. We've never been lucky enough to give TWO treatments AT HOME....IN A ROW!

Thursday we have a follow up appointment at the clinic. The blood work will tell us if he needs another blood or platelet transfusion.

Paging Dr. Carson!

Today I was reminded just how much children absorb and how they really are paying attention sometimes.

On Monday, Paul purchased an 8 foot section of 3/8" tubing and a turkey baster to do something with his car...flushing the power steering fluid? Something like that. I just remember is was something with the car. Anyway, he left those items on the counter, mistakenly thinking they would still be there when he was ready to use them. They are no longer there. (What was he thinking?!?)

Carson has decided that the tubing is a "tubey" for him or me or one of the dogs...and the turkey baster is a syringe that "gives tubey a drink". I spent the better part of the day with the tubing draped around my neck watching and listening to Carson give me my medicine.

He's got the routine down pat...this is exactly how they do it at the clinic:

• Do the "washy washy": That's what the nurses say and do on the end of the tube with an alcohol swab.

• Hold the syringe upright and squirt out a little bit to get the air bubbles out.

• Insert the syringe to the end of the tube and push in the liquid.

• Make noises that sound remarkably like a jet engine and point with your finger to indicate where the medicine is going through the tube. (Okay, so the nurses don't make noises and point. Carson has to add his own style.)

• Clamp the tube as soon as you're done. Say "CLAMP" loudly and with authority. (The nurses and doctors don't say "clamp". Carson isn't a doctor, but he plays one at home. It's either that, or he's been watching too many medical dramas on TV.)

• Be ready with explanations when needed. One time Carson forgot to do "washy washy". He explained he didn't need to do that because "he's a doctor." That makes me feel so much better.

Dr. Carson is in the house. Amazingly, there's not a dog to be found! I guess mom will have to do.

All this today was a bit of a flashback to when Francesca was diagnosed and I would give her clipped syringes to play with. She would give insulin shots to all her stuffed animals and even Daisy too. I'll be amazed if my kids don't end up in the medical profession!

-Jennifer

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.

Fighting leukemia one day at a time. Day 80 of 1,278

I called home today only to interrupt Jennifer doing the happy dance...Carson's port cooperated and she was able to give the chemo treatment at home. Yeah!! Way to go Jennifer and Carson!! That's one less trip to the clinic. Whew!

Speaking of the clinic, all went well yesterday. Just like us, there were a number of kids there for long infusions, so the Child Life coordinator ordered some pizza and corn dogs. Once again, hats off to Growing Hope for funding the chow for the kiddies. Once Carson knew pizza was on the way, he started running around the clinic yelling, "Is it here yet? Is it here yet?" Can we get that boy some happy juice?

Carson and the sister of another patient square off over the train toys. Train toys versus chivalry...she doesn't stand a chance.

Carson and a bud share a seat and catch a few scenes from the Transformers movie.

Carson inhales a slice of pepperoni pizza...I have to count and make sure I still have my fingers.

We're out of gas at the end of the day.

Tomorrow's going to be a busy day. Jennifer will be back on chemo duty...and if we just don't have enough going on...we're getting new windows at the house. So, tomorrow, while I'm sitting in my office at work having grown up conversations only to be periodically interrupted by the soft clicking of keyboards, Jennifer will be home pulling her hair out.

Please pray Carson's port continues to cooperate....and that Jennifer doesn't kill me!

Paul.

Fun and Laughs at Kings Dominion

Day 79 of 1,278. Fighting leukemia one ride at a time!

We had an AWESOME day on Sunday. Well, Saturday was pretty good too, but Sunday wins the prize hands down.

Sunday we went to Kings Dominion...and had an absolute blast! For those of you not familiar with Kings Dominion, it's a large amusement park about an hour south of Washington. It's probably of similar size and flavor to Six Flags. There are the Nickelodeon characters and the shows. And of course, the rides!!

Check out the photos!



A super big THANK YOU goes out to the folks at Growing Hope for making this trip possible. They provide non medical support to families with children with cancer...like meals for the kids spending all day at the clinic and Kings Dominion getaway packages. They are super cool people.

The timing for Kings Dominion couldn't have been any better. The weather was perfect. The crowd was nonexistent. Our ANC count is the highest it's been in a couple of months. And with no chemo for the past two weeks, Carson was feeling awesome! What else could we ask for??

Well, if we were to split hairs, there is one thing that we'd ask for. Sleep! I don't know if it's the medication or just the fact that he is getting older, but that boy of ours is hardly sleeping. Carson seems to have given up naps. Who would give up naps?!? But even with giving up naps, he's not slowing down. He's still going to bed late and getting up early. What's up with that?

Just in case he's reading, I'm including the following open letter plea for help:

Dear Mr. Sandman,

Why don't you come to our house any more? Was it something we said? Did you lose our key? We can get you a new one. Whatever happened, we are sorry and we will do better. I promise. We really miss you! Things just aren't the same since you stopped coming. I wish you would come back. Carson needs you. Jennifer and I need you!!

Oh... forgot to mention...Saturday was the open house for the Falls Church City Maintenance yard. Carson got to sit in the garbage truck, front loader, school bus, snow plow, and many other vehicles. He got a t-shirt and kids construction hard hat...he's wearing the t-shirt today.

I'm writing this from the clinic. Things are going smoothly so far, but we will be here most of the day. We are restarting chemo (since our numbers are finally good enough) and have treatments most everyday for the next two weeks. Please keep Carson in your Prayers!!

Paul.

Making the Rounds

Day 75 of 1,278

We had our follow up visit at the clinic today. Carson was so excited when he woke up. He was even asking to go to the clinic an hour before his appointment...just to hang out! But, Jennifer and I are dream crushers. We made him hang out at the house instead. I know...we are SO mean!

"Maybe if I make a funny face I'll be taller." Who knew that getting measured was so much fun!

Anyway, I am happy to report today's visit was far less than Tuesday's four and a half hour ordeal. The nurses were able to coax some blood out of Carson's port without any major problems.

As we waited for the blood numbers to come back, Carson made his rounds. He made his way back to the nurses station and started giving them Hershey's Kisses. Of course, then the nurses started giving him all kinds of attention...so he gave them some more Hershey's Kisses. Just where the heck was this going? Was he about to ask them for their phone numbers??

Before we could find out the answer to that question, we were done. Carson's ANC level was up to 610 - about a 50% climb in two days. Still not great, but much better than where he was.

Monday is the next big appointment. Carson's ANC needs to be 750 before starting the next round of chemo. We were almost there today, so getting there by Monday is practically a forgone conclusion. Looks like it'll be a chemo Monday.

Pray for Monday!

Paul.

Tube Wars (part deux)

Day 73 of 1,278

Just a quick update on our visit to the clinic today. We were expecting to spend most of the day there receiving chemo. Instead, we ended up spending most of the day pulling our hair out just trying to draw blood from Carson's "tubie".

It seems like a simple process. Insert tubie into Carson's port; check blood cont; receive chemo; go home. Normally accessing the port only takes a few minutes and goes smoothly. "Normally" being the operative word. Accessing the port did take just a few minutes. Getting blood return, however, took several hours. Ugh!

When we've tried to administer chemo at home we've always had problems. Well, not exactly always. Of the four times we've done at-home treatment, tubie cooperated with us on one occasion. One.

Oh well. Today's incident is just one of those things. The really great thing is that we are in a super clinic surrounded by totally awesome nurses and doctors. It's like our second home and passing the time there is actually very easy. Scary easy.

Ah....15 seconds of silence.

Carson was still a great trooper today. He played and talked non-stop. Non-stop...especially on the talking part. And when he learned there was pizza and mini corn dogs available, he went on an eating rampage. Something clicked and next thing we know he is on an eating rampage. Chow down, buddy!

Pizza and corn dogs. Does life get any better than this??

Anyway...we finally got blood from Carson's tubie. His ANC was up to 410...which is a considerable improvement from Friday's 80. HOWEVER, it's still not high enough to restart chemo. So...after four and a half hours at the clinic, we came home. We go back on Thursday to check blood again...it's looking like he may need a blood transfusion.

Pray tubie cooperates on Thursday!

Paul.

Leftovers

Day 72 of 1,278.

Carson woke up in another great mood today. We still can't really do much in public, but that doesn't keep motormouth from running his lips.

The chemo treatments must be having their impact on his taste. He is asking for and eating more food. We are not picky. Pretty much whatever he asks for, we'll let him eat. Our problem is that for every bite he eats, there are at least 10 failed attempts.

Here's a small sampling of "failed attempts" from this weekend:

• Carson asks for Chocolate chip cookies. Jennifer makes them from scratch. He sniffs one and walks away.
  

• Carson asks for Sun Chips. Shame on us...we don't have any in the house. We go to the convenience store nearby and they don't have any either. BUT, they do have Pringles and he asks for those instead. When we get home, he gets a whiff of the open can and walks away.

• Carson asks for mac and cheese. Easymac. I mistakenly inform him that we have some at home. We don't. We have Velveeta brand...and that's a deal breaker.

Carson pleads for biscuits and gets his wish. The dogs are waiting just outside of camera range, knowing their patience will soon pay off!

Several months ago I had some Sport Beans in the house and Carson had some of the orange ones. Sport Beans are a Jelly Belly product that are supposedly balanced nutritionally for athletes. I have to admit, I have a hard time taking Sport Beans seriously (they are made by Jelly Belly!), but they sure are tasty! Anyway, this weekend Carson asks for some Sport Beans...orange. I don't have orange, I only have one pack...raspberry.

Off to the store to get some orange ones. But not that many stores carry them, so we have to head to the local running store. Just our luck...the running store is out of orange, too. Ugh!

For Plan B (or, what now seems like plan G) we head to the CVS next to the running store, get some Starbusrt Jelly Beans, and pick out the orange ones for Carson. Jennifer and I buy two bags and do just that. And when we're done, Carson looks upon those jelly beans like they are spinach. No way is he going to let one of those things get passed his lips.

Remember the video in Fuller than a Tick when he ate pizza for over an hour? Yeah, long gone are those days!

So here I sit...eating chocolate chips cookies (which are just absolutely delicious!), Pringles (the can is almost empty), and Starburst Jelly Beans (hmmm...that second bag is lookin' a little light). While Carson continues his battle with leukemia, my battle is with all the food he leaves behind.

His battle is a tough one, but he's making it look easy. Please keep the prayers coming!

Paul.

P.S. If anyone has any ideas on what Carson may like to eat...we are all ears!

Stuck at Home

Day 70 of 1,278.

Francesca completed her first full week back at swim practice this week. She is such a strong swimmer! She works hard. We are at practice every weekday afternoon and again on Saturday. This week she was moved to the "select" squad for Saturday practice. Wait a second...that group meets at 6 in the morning!! Which means we'll have to get up at 5:15 a.m.! Can't I just go ahead and teach her to drive and throw her the keys?? (Did I tell you how much I love competitive swimming?)

Is that my pillow calling me?? Yes, Pillow, I hear you!!! I'll let Jennifer take the first practice.

Carson seemingly loads up on Red Bull.

Carson spent most of this week bouncing off the walls. We still have a super low ANC, which means we can't go out to public places. Nevertheless, we haven't seen him in this good of a mood in a long time.

Chef Carson barks out instructions, then give us the "crazy" look to show he means business.

On Friday Carson was on full blast...playing and talking nonstop. I stayed home from work while Jennifer and Nona headed out to do some "much needed" shopping. They tried to tell me they felt a certain responsibility to society to do whatever necessary to ensure our nation's economic recovery stays on track...and shopping seemed like the best way to do it. I didn't buy it...but "buy it" is exactly what they did. Judging from the number of shopping bags that had to be carried in from the car, I'm betting they wore the paint off their credit cards.

While they were out swiping plastic, Carson and I hooked up the amplifier to sing ABC and Twinkle Twinkle Little Star. Luckily we didn't cause any windows to shatter or cars to crash!

After singing our hearts out we headed off to the clinic for our appointment to check platelets. For the first time ever it was just Carson and me...no adult supervision. (Scary, huh?!?) Carson was "accessed" - had a tube inserted into his port. I am pleased to report that for the second weekend in a row he didn't need a transfusion of platelets. On the not-so-great-news side, however, his ANC only came up to 80 since Tuesday. So...we are still avoiding public places.

Recuperating after getting injured playing dump trucks.

Friday evening concluded with some playing outside...and a fall that resulted in two scraped knees and one scraped elbow. That was pretty much an evening ender. It's always fun until someone gets hurt!

Our main worry today? Hoping and praying he didn't pick up any bad germs on his fall. With an ANC of 80, he's defenseless.

Paul.

Another Week Off

Day 68 of 1,278

Just a quick note to say we are having another week off chemo. Carson went to see the doctor on Tuesday to kick off the second part of the consolidation phase of treatment, but it turns out his ANC level was too low. Remember what ANC stands for? Don't feel bad if you don't...it took us weeks before the ANC lingo started to stick. Check out our post Meeting up with Friends from a few weeks ago for a refresher.

Otherwise we are just happy as can be that Carson's appetite is picking up. Last week at this time we were lucky if we could get him to eat three goldfish crackers a day. Today he woofed down an entire hot dog. Okay, so that's still not a whole lot for a growing boy, but it's a heck of a lot more than he's been eating. Heck if he keeps this up, someday, a few years from now, he may regain the weight he's lost.

Oh, and this last note. If you haven't already, take a look at the Francesca's post from 9/13 and support Kathleen and Brad as they raise money to fight leukemia. This is absolutely the easiest way to help Carson!!

And if you've already made a donation...You Rock!! Thanks!!!

Paul.

End of Summer - Back to School :-(

HEY EVERYONE! Man, has it been a LONG time since I've written for the blog.

After Carson was diagnosed with leukemia my grandparents came up from Texas. Grandma stayed with my mom and dad for 5 weeks while Grandpa took me to Texas with him after 3 days. I was planning to go to camp there. But since they wouldn't let me call or check on the blog, I decided not to go. I spent a LOT of time with relatives. We went to water parks, beaches, restaurants, friends houses, and out west in Texas. Texas is a lot bigger than Virginia. They have LOTS of things to do. I was never bored!

School started this week. All my teachers are nice and seem like they don't give loads of homework. (Yeah!) I enjoy seeing all my friends again!

You know how one of our friends Kathleen is doing the Walt Disney World marathon, in honor of her Mom and Carson? It turns out that my homebase teacher Mr. Lands is also doing the Walt Disney World marathon. He's running for Carson and the Leukemia and Lymphoma Society, too!!

Please, please, help Kathleen and Mr. Lands raise money to help Carson and fight leukemia!! Donate by clicking their names under the TNT logo to the right or the links below.

Kathleen's Fundraising Page

Mr. Lands' Fundraising Page

Carson and I went back to the hospital one day to have our picture taken by Flashes of Hope.

Thanks for all who have been supporting and helping us through this time!

Francesca

No Platelets Required

Refreshed and still fighting strong. Day 63 of 1,279 in the war against leukemia.

Jennifer and I slipped out late Friday night for some kid-free time together. It wasn't quite as exciting as a date. We were going to the grocery store, which under the circumstances is kinda like a date. Time together, even going to the grocery store, is time to cherish.

Jennifer diligently collected coupons to save us some extra $ (well, more like some extra ¢¢), and as soon as the kids were asleep, we headed out the door and left Nona in charge.

Finally, some time alone. Now we can take a leisurely drive to the grocery store and talk about our day. Not so fast.

Note to self: Heed the No Right on Red sign posted at the intersection of Little Falls and Great Falls. Even if it's late at night and the sign is covered by trees and there's seemingly no one else on the road, it doesn't matter. That little police girl likes to write tickets!

And that's exactly what happened to us...or rather, me, on the way to the grocery store. We were only a block from our house and we didn't even know the sign was there!

But before I could get upset at being pulled over, something happened that just made me laugh. I'm sitting in the car (a regular 4-door sedan) and when I rolled down the window to talk to the officer, I realized she was at eye level. My eye level...and I was sitting down!

I'm not sure I've ever seen a police officer that short. Several thoughts raced through my mind:

• Did they waive the minimum height requirements for being a police officer?
  

• Has our local law enforcement resorted to hiring 14 year-olds?

• Is this the "new" softer side of the force - hire shorter officers to write tickets so the ticketees don't have to crane their necks to look up while being interrogated?
  

• I didn't know Dr. Evil created a female version of Mini Me!
  

The damage for making a right on red and not heeding the hidden sign? $111. But, as our officer pointed out, you can pay online! Oh, I can pay online. Great. That makes me feel much better...NOT!

So much for clipping those coupons. That was one of the most expensive trips to the grocery store ever!

I'll leave you with this first:

Carson creates a masterpiece...a post-modern impressionist painting entitled Bulldozer Loading Rocks.

In important news, Carson visited the clinic Friday morning to have his platelets checked. He did NOT need a transfusion. (Another prayer answered!) However, he did, for the first time ever, play in the art area. I don't know if this is a side effect from the medication, but Carson has NEVER before had anything to do with arts and crafts. For the record, he was not coerced or forced to participate - he did so willingly. And he even had fun! (Go figure.)

Paul.