At the Beach

We made it to the beach and are having a great time.

Trying to get on the road always proves to be one of the biggest obstacles of a vacation. Jennifer had to get her stitches out of her hand. We had to get the dog taken care of. And poor Carson...all he could think about was getting to the beach. I have to admit, he reminded me of myself when I was young. He wanted to get on the road so badly, and mom and dad were still doing stuff around the house to get ready. He was so frustrated!

Anyway, we finally made it and Carson is absolutely beside himself. He screams with excitement at the top of this lungs when the water splashes on his feet or at the mere mention of going to dig in the sand.

This afternoon he went to the store for some shopping and Carson bought a new Ford Woody truck...and another mail truck. (Yes, we have an extensive collection of replica US Mail service trucks.) Thanks to a dear neighbor for supplying Carson with ample shopping money for his vacation. As you might have guessed, it was burning a hole is his little pocket and he blew it all on day one.

What we really need is another toy truck! Carson shows off his latest purchase - a 1949 Ford Woody. (As you can see, the infection around his nose is clearing up nicely, too.)

This evening we went on a "rocket boat" ride. Three or four times during the ride Carson leaned over and said, "I love this boat, Daddy!" And this is where I mention that I am one of those rare beach haters. I can't stand the hoards of people, the sand in everything, the overpriced goods...my list goes on and on. But, moments like this make it all worthwhile.

The rocket boat stopped for a few minutes to look at the dolphins. Obviously upset, Carson turned and remind us of our purpose for getting on the boat, "I want to go fast. I want to go fast!"

I'll write more about this later, but I need to throw out a huge thanks to Believe in Tomorrow for making this vacation possible.

Paul.

Close Call....Whew!

Carson visited the clinic today for a counts check and to let the doctors at the clinic get a view of his blistery nose, lip and eye.

• Counts low? Yes, ANC of only 600.
• Blistery nose, lip, eye? Probably impetigo.
• Contagious? Yes.
• Need to switch antibiotics? Yes.
• Need to hold his chemo? No, continue as before.
• Need to stay home from the beach? NO!!!
• Can you say Hallelujah?! YES!!

We have been really looking forward to this trip, so we are now even more excited.

At the beach we'll be guests of Believe In Tomorrow. A great organization that offers respite housing to families with children in treatment for serious illness. We have heard nothing but wonderful things about this place, so we will be packing up the Tahoe and headin' out!

We'll post again when we get there......

-Jennifer

Declan's Balloons

Written by Francesca

When Carson was in the hospital last, the one in May where he had a virus and low counts,our next door neighbor was a little boy named Declan Black Carmical, who wasn't even a year old. On August 18, 2010, Declan lost his battle with cancer. He was a little over a week shy of his birthday. Today, August 26 is his birthday. Declan has a twin named Cole. When you think about Cole's birthday, you cannot help but think about Declan.

On August 23, Monday, was Declan's funeral. Carson would be too loud and disturbing at Declan's funeral, so I got to stay home and watch him while my parents went to the funeral. When my Mom got home (my Dad went back to work) she said that they wanted us to release a blue ballon (blue, the color of declansjourney.com) and a gold balloon (the color for pediatric oncology awareness) on his birthday. So today, we tied a note to balloons that said "This balloon was released in honor of Declan Black Carmical August 26, 2009 to August 18, 2010 due to cancer please go to www.declansjourney.com". We let out a dozen balloons in honor of him.

Carson, ready to release a balloon for "baby Dec-a-lan in heaven" Carson is currently fighting some kind of cold sore/chicken pox like virus on his nose and just under his left eye. He is taking an anti-viral 3 times a day. Tomorrow's clinic visit will see if it is helping. We hope to be able to go on our beach vacation next week!

Please pray for Declan's family, because of the depression and sadness.
Go to www.declansjourney.com for more information.

In Training

I am officially in training for the Walt Disney World Marathon with Team in Training and the Leukemia and Lymphoma Society. I signed the papers, I've got the training plan, I've got my work cut out for me. I may be doing the work of running a marathon, but those doing the real work are the kids I see every week fighting cancer with grace and strength.

We went to baby Declan's funeral today and watched the hundreds of people there (us included) as they grieved. I am more committed than ever to making a difference - even if in a small way - to those who are dealing with cancer.

I've got some work for you too. I can't do this alone. To cross the finish line of finding a cure we need your help. Please visit my fundraising page and make a donation to LLS. Send the link to all your friends and ask them to donate too. Otherwise I will bug you endlessly!! Don't make me do this; just ask Paul, I am very effective at bugging people.

I am sure I won't have to bug YOU. So, let me just say, on behalf of all the kids fighting cancer, THANK YOU!!! Isn't that nicer than being bugged?

-Jennifer

Sadness

Our sweet little 10 month old friend, Declan, who had been fighting cancer since March, passed away early this morning.

Declan was our neighbor the last time we were in the hospital. Although, we did not get to know the family very well, we were instantly bonded by our fight with cancer. We were so excited to see Declan released from the hospital and at the clinic a few weeks ago. We welcomed his big smile and beautiful spirit. We were ecstatic to read his blog and hear about the wonderful days he was spending at home. But now, we are so sad and heartbroken that his life was so short. Although I know God has a plan, and I know Declan is no longer suffering; it is times like these that I always wonder how a loving, caring God can allow such pain.

And I always think "this could just as easily be us....." Cancer, go away and stay away.

Please pray for Declan's family today. Then, go and honor Declan's life by hugging your children. We are only stewards of God's little blessings; and their is no guarantee as to how long we'll have them.

-Jennifer

Clinic Visit Monday

We made our way to the clinic on Monday for a counts check and everything looked good. Carson's ANC was a whopping 1280 with white blood cells, platelets and hemoglobin also way up. He set a weight record too....19.4 kilos.

This lovely jump in the ANC (without the benefit of steroids) leads us to believe that maybe it was the bactrim antibiotic that was suppressing his counts somewhat. We have not had this high of an ANC count in a while and the only thing that changed from two weeks ago (when counts were too low) was the deletion of the bactrim.

Next clinic visit is August 27. Until then, we will do our 5 day burst of steroids (hunger already kicking in) and continue the 6MP and methotrexate dosages as before. We had the vincristine push on Monday, so we don't have to worry about that for another month.

Things are good. It is a nice place to be right now. Praise be to God!
-Jennifer

Another Milestone, Another Prayer

It's been 14 months since Carson's been to his Sunday School class at church. This morning, with his counts holding steady, we thought we'd give it a shot. Besides, it's August. There are a number of families on the road, and colds and fevers seem to be in a lull.

At least it seemed like a good idea to us.

Carson, on the other hand, was not too keen on our little plan. In fact, he countered with a major production straight from the whine and pout handbook. It was classic! It was just like taking a child to class for the first time.

And this was all before leaving the house!

So we finally got to church - late as usual - and our first order of business was to FIND Carson's class. (He moved up to a new class during the past year.) Carson was just about to start on an encore whine performance when his teacher emerged and asked, "Would you like to see our box of cars?" And with that he was hooked. He didn't even look back to say "bye."

Yes, mom and dad were more than a little teary-eyed and nervous. Jennifer held the pager in her hands during the service. She didn't want to take any chances and accidentally miss a call.

But, no page ever came. We picked him up an hour later. Of course he had a blast and can't wait to go back.

And while we celebrate Carson's return, we watch another patient from the Pediatric Oncology ward with great trepidation. Please join us as we lift up Declan and his family as they face the unimaginable. Read more at www.declansjourney.com.

Paul.

The Count

"The Counts" came in on Monday and Carson had an ANC of around 880. That's good news! We'll continue all his medications as we have been, only now we won't have to give him bactrim on the weekends. He'll have a once a month IV of pentamadine instead.

Next Monday Carson is due for a vincristine push and will begin a 5 day round of steroids. Didn't we just do that? I will have to stock up on chocolate bars and any other sweet he might crave during that time. I'm sure we'll also be visiting Joe's Pizza this week too. Anyone want to join us?

Francesca is at PVS Long Course Eastern Zone Age Group Championships today through Saturday. This is the same meet she swam at in early April in New York. This time, the meet is in Rockville, Maryland. She'll once again be swimming against girls from all over the East Coast, only this time she'll be swimming 6 events. The competition is fierce. We will report the results in a later posting. We don't know what to expect. We are ALL worn out from a long and busy summer swimming season.

No matter what the result though, we get a break after this! No workouts, no swim meets until September! Yea!

Things are good here, but we can't forget our "cancer family" of which we are now a part. We have several friends who are will be getting scan results in the next few weeks. Another is in the hospital and just had surgery for what appears to be a relapse. Please continue to pray for all these families and children.

-Jennifer

Another Week Gone By...

Visitors
We had visitors from Texas this week. Our house was bursting at the seams with four extra people, but everyone has had a great time; except Shade, who has spent the week under the bed hiding.

Here's pictures of some of the activities.

Ben and Francesca with Jefferson at Monticello.

Carson smiles when receiving the anti-aircraft "gun" complete with army truck all the way from Texas!


Carson then poses with Aunt Jeffere and "the gun"

Next, Carson proceeds to have Nona play "Army trucks with guns".
Last time I checked, they were still playing.

The "Changing of the Guard" at Arlington Cemetery.

Carson views the Changing of the Guard with great interest.

He was actually pretty quiet during the whole thing!

Francesca, Ben, Nona and Auntie take a break at Arlington.

Swim Meet
The weekend came, so it was time for another swim meet. NVSL All Stars. Francesca did great; she was 5th in the 50m Fly and 2nd in the 100m Individual Medley. We think this is an awesome finish for someone who is not a sprinter. No photos here at Francesca's request.
This week from Wednesday through Saturday we have Zones where Francesca will compete against 11-12 year old girls from all over the North East. Go Francesca!

Clinic
We have a clinic visit tomorrow to check the blood and get an IV of pentamadine (our new antibiotic). We are hoping for rising counts since Carson did not have bactrim this weekend. We shall see.

Hope everyone had a great weekend!! We are so thankful that we've had a busy, normal summer that did not involve a hospital stay. This kind of busyness is better than the other. We don't complain about it one bit!

-Jennifer

Hair Report Part 2

News Flash: Carson now actually has enough hair to cut! It wasn't much, but the boy needed a trim around the ears and neck. This is the most hair we've had to cut in over a year.

Carson was so excited to view the bits that were on the floor. He squealed "look at my hair - there's my hair". To us, it's just an indicator that life is getting somewhat back to normal around here. We are so thankful.

Paul does the honors with the clippers. I came in with the scissors later.

The hair model smiles for the camera.

Police, Francesca, Clinic

Police
Carson did have a run in with the police this week, but it was a good one.

The most fun morning EVER started out with breakfast with Officer Tom and a gift of a REAL police cap and lanyard. Then the real fun began. Carson got to climb in the police car - while lights were flashing - and then he got to RIDE in the police car! The bad guys must have known Carson was out on patrol, because Tom and Carson returned within a few minutes and no one was sitting in the back seat handcuffed.

Thanks Tom! You made Carson's whole week. He wants you to know that he is available for ride-alongs whenever you need some back up or need help with an all night stake out.

Instructions in handling the radio, a must for any police officer.

Moments before the "ride-along"....Carson is all smiles.
Francesca is smiling because Carson will gone for a few minutes!

Francesca
Another summer weekend? It's time for another swim meet.....
Francesca swam in the Divisionals meet for her summer team. That involves swimming two events against girls from the five other teams in your division. Francesca got 2nd in the 50m butterfly and won the 100m individual medley by 9 seconds. Her times qualified her for NVSL All Stars. She'll swim those same events against those girls with top times from the other 16 divisions in the Northern Virginia Swimming League. It's a big deal around here. Francesca will go in to the meet seeded 2nd in the 50m fly and 3rd in the 100m IM. Go Francesca.....Keep Swimming Fast!

Clinic
We had a counts check at the clinic today. It was AGAIN, not what was expected. Carson's ANC has fallen to 670. Technically he should stop his chemo AGAIN since he is below 750; but instead, the Dr. decided that maybe his weekend antibiotic doses of Bactrim (used to prevent pneumonia) could be suppressing his counts. Bactrim is known to do this, so we will switch to a once a month IV antibiotic next week when we return to the clinic for another counts check.
In a nutshell, lose the Bactrim, add the Pentamadine, hope/pray the counts rise enough to maintain our current chemo dosages.

Thanks for your continued prayer for our family. We are still praying for the day when the dosages of chemo and the types of medicines will be somewhat set. We will wait awhile longer.....

-Jennifer