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.

Another Day, Another Doctor

Fighting leukemia like a Jedi Knight. Day 62 of 1,278

Francesca receives excellent diabetes report; celebrates with pixie sticks

One of our biggest fears is focusing so much time and attention on Carson that we unintentionally neglect Francesca. Although most of what we write here is about Carson, we do make every attempt to divide our time as equally as possible. Sometimes it's tough, though, when he requires so much care.

Well Thursday was finally Francesca's day...kinda. It was her day to go visit her doctor at Children's. Hey, equal treatment, right? We do it for Carson; we do it for Francesca, too! Okay, it's probably not exactly how she would prefer to spend time with her parents. But hey, you don't get to choose everything in life.

We finally got in to see the doctor. The result: Despite indulging in all the luxuries of summer, food and fun, while also growing almost an inch and gaining 5 pounds, Francesca did a remarkably good job of staying on top of her diabetes. Her pediatric endocrinologist gave high marks to Francesca...and Jennifer...for doing such an awesome job. Keep it up, guys!


Carson gets fresh blood; decides to ride Indy 500 on tricycle

Carson had is scheduled appointment on Wednesday to receive a blood transfusion. Again we were blessed with no negative reactions.

I don't know if it's the fresh blood, but he sure seems to be feeling a lot better. I wonder it it could have anything to do with the person who donated the blood? Hmmmm. Or, maybe he was feeling better because he finally ate a little bit. Emphasis on little bit...which is not much, but a lot better that nothing. (His weight is down about 10% since diagnosis.)

The good part is he seems to be feeling better. And that's all that matters.

Friday we head back to the clinic to check platelets. They were looking a little low earlier in the week, so we head in to have them checked. If he's too low (and I'm praying he is not), he'll get a platelet transfusion.

Just like my mom used to say, "You don't want to start the weekend with low platelets." Oh, wait, maybe she didn't say that. Never mind.

Paul.

p.s. Just in case you are really wondering, Francesca did NOT really celebrate with pixie sticks. As for Carson and the Indy 500...he's always talking smack.

Off to School/Off to Clinic

Day 60 of 1,278.

One to the Clinic

On Tuesday we had another spinal puncture and chemo flush. I had to ask Jennifer...is this the fourth week in a row? All went about as smoothly as could be expected. Carson pretty much freaks out when getting his port accessed. In fact he screamed so loud the doctor contemplated forgoing the usual stethoscope on the back to listen to his lungs.

Okay, I'll fess up...I have a pretty healthy fear of needles myself. Heck, if I saw a 3/4" needle being pushed into my chest, I'd probably react the same way.

And another to School

Today was the first day back to school in Virginia. Are we the only state in the union that has a law on the books forbidding school districts from starting before Labor Day? Maybe it's just me, but I'd much rather visit Disney World in May than in August. August is NOT the time of year to visit Florida.

Where is it better to visit in August rather than in May? Oh, Canada! Okay, that's a bad joke, but think about it. What better way to boost tourism? Now I'm sitting here wondering, were the Virginia lawmakers secretly influenced by our neighbors to the north when they wrote the law on our school year? Hmmm...sounds like some kind of conspiracy, eh?

Cool as a cucumber before school.

I digress. So, Francesca was ready for school. She picked out a new backpack this year and chose the Livestrong model. Normally we'd object to paying so much for a backpack that's going to be thrown around at school. But given the financial support to fighting cancer and raising awareness, we're willing to splurge. We have good reason.

Fighting cancer and high fashion all rolled into one...the Livestrong backpack. Unfortunately it weighs a little over 400 pounds when fully loaded. What the heck is she carrying, bricks?

Off to the Clinic...Again

Although yesterday's visit to the clinic was good...it wasn't quite good enough to preclude another visit today. Carson's hemoglobin is low, so we'll be heading back for a transfusion. I guess it's a little unfair to single out just the hemoglobin...his platelets are low, too, as are a host of other things.

Chemo sucks. But, cancer sucks worse.

Please pray we have a quick and uneventful visit!

Paul.

Leukemia vs. Diabetes

Our crusade against leukemia. Day 58 of 1,278.

Jennifer and I made it out to the bike trail this morning to push through a six mile run. The conversation (when we weren't out of breath) covered all kinds of topics. There were the regular topics: "Did you see what she was wearing?!?" "Look at that form...how can you run like that?" "That jerk cyclist almost ran us over!" (Uh, I'm sure no one says that about me when I'm riding.)

But what we talked about most was leukemia.

Breaking the Cardinal Rule

When Carson was first diagnosed with leukemia it was a flashback to when Francesca was diagnosed with type 1 diabetes. The shock of the diagnosis, the fear of what's to come, the crash course in treatment and side effects.

But after the diagnosis, when the haze in your brain finally starts to clear, you realize you are in a different world.

When Francesca was diagnosed with diabetes we quickly linked up with other parents who were going through the same thing. There are online communities sharing experiences of fighting high and low blood sugars, and exchanging tips on the latest products and techniques.

But the "leukemia club" doesn't seem to exist...and I think I know why.

I've never been very good at following instructions. One day while Carson was still in the hospital I sat down at the computer and did the one thing our doctor warned us not to do...I started searching the pediatric leukemia links on the Internet.

Bad move!!

Instead of finding a local group of parents going through the same thing, I found all the information and stories I really didn't want to see. The stories where the regular treatments aren't working. The rejection of bone marrow transplants. Relapses.

Talk about scary!! All the cases are different. Prognosis is different. This wasn't what I wanted to see.

I guess you could say my foray into the Internet world was useful, but not in the way expected. I didn't find what I was looking for, but I did come away with a profound sense of gratefulness for where we are in treatment.

Carson trying out a new look with Nona's reading glasses.

Maybe I did find what I was looking for...a reminder that every day is a blessing.

Please remind me to follow doctor's orders next time!

Paul.

p.s. Carson heads back to the clinic tomorrow for more chemo. Please keep him in your prayers!!!

Good times on the Hog

Carson at war with leukemia. Day 55 of 1,278.

The break from going to the clinic has been nice. Carson isn't always in a good mood, but you wouldn't know it by these pictures!



Unfortunately we are going through a stretch of "gotta have momma" syndrome. Carson can be...scratch that...he IS a bear to be around. He doesn't want mom out of reach, much less out of sight. And this makes for long days at home.

The one reprieve is that Carson has wanted to meet up with his best bud Nils in the evenings and cruise the cul-de-sac. His desire to get back outside and ride his "hog" is alive again. Aren't those pictures great?!? You can tell he's having a wonderful time...plus it's good exercise for his weak legs.

Go Carson!!

Paul.

What's on the Menu?

What will a 3 year old on chemo eat? What will a previously fussy eater on chemo eat?

I can say with confidence, "I don't know". I wish someone would tell me. If I knew what the deciding criteria was, I might do better. Sometimes we sniff the food and won't even take a bite, sometimes we taste the food, then spit it out; and sometimes we just eat one bite and that's enough.

Anyway, today the answer to the above question was sugar cookies with frosting and sprinkles. Before that though, we had to ask for (but not eat) Mac N Cheese, bananas, potato hot dog buns, Rice Krispies, toast, popcorn, pizza, granola bars and chocolate chip cookies.

Now, what will he eat for dinner at 6:00? It is 2:00, I better start getting prepared.

-Jennifer

Is this a funny face? Or is he simply planning how many hoops he can get mommy to jump through?
He resembles Dr. Evil a little bit, don't you think?