Kindergarten Update, Counts and a Race

Yesterday Carson had his first full day of Kindergarten. Check off another milestone! Following that, he had his first "sports class". The coach ran them around for a good 45 minutes through an "agility course". He was all smiles after each activity, then melted down from pure exhaustion about 7:00. He was promptly put to bed. I had to wake him up at 7:30 this morning so he wouldn't miss the bus. Luckily, Wednesdays at Kindergarten are only half days. The boy can catch up on some rest. He has chosen to do so by watching a "Curious George" marathon.

Monday at the clinic was again a repeat of "Carson's Continuing Counts Saga". A week out from his virus and ER visit, his ANC came in at about 3000. Too high, so the 6MP dosage will rise and we will watch and see. Vincristine, Pentamadine and Prednisone were administered as well. We are on Day 3 of steroids and so far; it looks like Carson will be living off of Honey Nut Cheerios during his steroid week.

In other news Francesca completed her first 5K in the Falls Church Education Foundation Race for the Schools. Paul ran with her and they were still speaking to each other after it was over. So....it was a good run!



Hope everyone has a great rest of the week!
-Jennifer

Clinic Report

Carson's clinic visit went pretty much as expected yesterday. His ANC had risen considerably to around 1100. That means it is time to start the chemos again. This time there is a new plan though. He will remain on the same dose of methotrexate (currently at about 75% of what is called for), but the 6MP will be cut to the 50% dosage. They plan to keep the 6MP at that level for at least one month; and if counts hold, the plan is to only increase the methotrexate and try to get that up to full dosage. In a nutshell, they plan to move slower with any dosage increases and to only increase one drug at a time. Perhaps some day we'll find the "Carson dosage". At this point I would rather have a smaller dose every day than stopping and starting all the time.

Because his counts were high, Carson was "rewarded" with the flu shot. Poor guy! Low counts mean you stay home and away from people, high counts mean you get to take even more medicine.

Surprisingly, with all the happens to him, Carson absolutely loves the clinic. He is so excited to go on his appointment days that he constantly asks "when we go to clinic?" "I go play with Ms. Gretchen". "who's gonna listen to me when I get there?" (translation: "which doctor is going to do his exam - which includes listening to his lungs") It is a real credit to the clinic that with all the not so nice things they must do to children there, the kids still want to be there and they still make it fun for them. Obviously, there's some real special people working there and we are grateful for that.

Lots of great events coming up in the next few weeks which directly benefit pediatric cancer research and Children's National Medical Center.

Our friend, Officer Tom of the Arlington Police Department is participating in Be Brave and Shave which will benefit Children's National Medical Center. Lots of policemen and firefighters are receiving donations and will shave their heads to benefit CNMC on November 7th. Click here to donate. There's a great picture of Carson and Francesca with Tom there as well.

The CureSearch Walk on October 17th benefits the Children's Oncology Group (COG), a world wide organization of which the doctor's at the clinic are a part. The COG treats approximately 85% of all pediatric cancer patients. They are making huge strides in treatment for kids because they share information with each other and make changes as they discover what works best. If you want to learn more visit this link. Nurse Katie from the clinic is participating along with others that we know.

Thanks everyone for your continued prayers, words and deeds of support. They still mean a lot to us as we're on this long journey!

-Jennifer

Friday Night/Saturday

Carson has been running a persistent fever since late Friday night and this morning his blood counts had gone a little lower. He's feeling really bad - he hasn't asked to ride the "hog" out in the hallway one time today.

The blood cultures that were taken the day he was admitted continue to be negative; so the doctors are fairly certain that he has a virus of some kind. In most people, it wouldn't be a big deal; but with his non existent immune system, it will be a longer, harder road for him. He will remain in the hospital until he is fever free and his ANC count gets somewhere around 500.

The new plan is to test his IGG at the 4AM blood draws tonight. IGG stands for something like Immunoglobulin - something that helps fight off illness. Anyway, if those levels are low Carson will receive an infusion of that tomorrow some time.

The doctor is also looking at the rules associated with Carson's protocol to see if he can be given the rescue drug neupogen. This will help boost his blood levels and give him another way to fight off whatever virus he has running around playing havoc with his body.

So, we have, at the very best, a few more days in the hospital. Thanks for the offers of help and food. Please keep praying that our little guy starts to come around real soon!

-Jennifer

Friday Morning Update

Things are not really heading in the right direction for Carson right now, but they could, of course, be worse.

He had a temp of 102 last night. That essentially bought us another day here. They drew blood cultures again, even though the 24 hour blood cultures have turned up negative. His cough persists, although the doctors don't hear anything to be concerned about in the lungs.

As an insurance policy to our remaining here, Carson's ANC went lower overnight- 192; and he spiked another fever of 101 about 10 AM.

Other than that, our evening and night were uneventful. We will wait on the 48 hour blood cultures to see what that result might be. Perhaps he has picked up a slower growing bacteria; we will see. Thanks for the prayers...please continue. We are already weary of hospital life.

-Jennifer

Thank You!

Day 260 of our war on leukemia!

It was another big week around here and, as usual, we have many folks to thank for it.

Treatment Recap

We are officially waiting for Maintenance to begin, the heavy treatment is over and Carson will begin Maintenance once his ANC reaches 750 (as of Friday it was 210). It has been almost two weeks since his last chemo IV and he is feeling really good. This coming Friday we will be back at the clinic to check the counts and perhaps start Day 1 of Maintenance.

Carson finished his radiation on Wednesday. To him, it only meant one thing.....prizes. The Radiation Oncology staff presented Carson with a whole bucket load of cars, water guns, a stuffed animal and pirate ships. It was like Christmas all over again and Carson sat and played with everything that he could right then and there. He was ready to move in to the hospital again, but finally accepted the fact that the toys would be coming home with us and a hospital stay wasn't needed, no matter how fun they are!

Carson scores a big haul of squirt guns, cars, and shooting pirate ships from the Radiation Oncology department at the hospital. Thank goodness the squirt guns were "unloaded".

Thanks to the radiation nurses, Beth and Amy, our sedation nurse Natalya and Dr. K for everything!

The Greatest Show on Earth

Our good friends at Growing Hope hooked our entire family up with tickets to the circus today. Unfortunately, Carson was not able to go due to his low counts; so Paul and I took Francesca and two of her friends. We had fabulous seats, front and center on the second row; and a great time was had by all. It is so nice to take a break from everything and the folks at Growing Hope are so generous. A Big Thank You!

Easter Bunny and Puppets Spotted in Falls Church

You might think that Carson was stuck just sitting at home again, but you'd be wrong. He was at home, but he had some special visitors thanks to our wonderful church family at Columbia Baptist and Lora Gravatt. Around 12 o'clock Nona and Carson opened the door to find the Easter Bunny outside waiting for him to find all the eggs she'd hidden in the front yard. Carson had his own personal Easter Bunny guided egg hunt! There were so many eggs he needed two baskets to carry them all!

After a little shyness at first, Carson warms up to the Easter Bunny and the candy!

A little bit later some other visitors arrived - Nancy Worcester and her hilarious puppet friend "Waco". They had finished a show at the church earlier that day and they made a special stop at our house just for Carson. They treated him to a special rendition of "Hole in the Bottom of the Sea" and Carson has not laughed as hard as that, nor smiled as much as that, in months.

Carson enjoys a special encore performance by Nancy Worcester and her wacky puppet, Waco.

Mrs. Lora from the church video taped it, so we've been able to enjoy the visit many more times today as well. With each playing, Carson continues to laugh and laugh....and so do we!

-Jennifer

Meeting up with Friends

Carson's fight against Leukemia: Day 47 of 1,278.

Today Carson reported back to the clinic for a chemo push (the last chemo of the week) and blood work. We are basically finished with the first two weeks of the consolidation phase. Yeah!! The results of the blood work came back good...kinda. He didn't need a transfusion of blood or platelets, but Carson's ANC was...well, a little on the low side.

Medical lesson of the day...as told by someone who did everything in their power to not take biology...and succeeded!

Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells produced in the bone marrow that ingest bacteria. Neutropenia is a serious disorder because it makes the body vulnerable to bacterial and fungal infections.

The measurement of Neutropenia is called your Absolute Neutrofil Count (ANC) and is classified according to the following scale:

• Mild Neutopenia: ANC of 1000 - 1500; low risk of infection

• Moderate Neutropenia: ANC of 500 - 1000; moderate risk of infection

• Severe Neutropenia: ANC below 500; severe risk of infection; activities curtailed

End medical lesson of the day...(okay, so I plagiarized a bit).

Carson's ANC today was a whopping 40. Four - zero. So, we are not going to be going out much for a bit.

The chemo side effects started to manifest in other ways, too. Carson had his first bought with nausea this afternoon. It wasn't severe or anything. He took a nap shortly after and woke up his normal, talkative self.

We know we are blessed to not have had any other complications thus far. Carson has proven himself to be a real trooper. I'm thinking his tolerance level for all of these medications must rival that of Superman...and for that we are forever grateful.

All was not bad...

After the visit to the clinic we all headed over to the hospital for pictures with Flashes of Hope. Carson had his picture taken along with a number of the patients on the pediatric oncology ward.

Carson and Francesca have their picture taken, then Carson hunts down Heather in her room.

After making mean faces to the photographer we stopped by to see Heather, Carson's adopted "big sis" on the ward. Both Heather and Carson were diagnosed with cancer on the same day. It had been several weeks since they saw each other last and Carson was super excited to see her again. Seeing sweet Heather again was definitely the highlight of the day. No. Make that the highlight of the week!

Go Heather!! Go Carson!!

To everyone else...keep those prayers coming!!

Paul.