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.