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.