ANC Roller Coaster

The graphic and post title pretty much sum it up. Roller Coaster! I was pretty surprised when Sally called and said his ANC was 610. Now It is SUPPOSED to be low two weeks after the Vincristine, that means the drugs are working. But I expected 1000 or higher. Remind me not to go to Vegas and bet on anything. As an added bonus, he falls into the "safe" range of 500-1500 and does not have to have a change in medications or dosages. The low ANC explains the crazy big goose egg Charlie developed after falling flat on his face on the first day of Kindergarten (See previous post).

1st Day of Kindergarten

August 27th, 2012 Primrose School of Centennial (Denver).

I don't want to say that the first day of Kindergarten is a non-event for Charlie, but it's kind of like every other time he moved up a class at primrose. It was a easy decision to keep Charlie at Primrose for private kindergarten. The last move to a different school was extremely trumatic for Charlie and Mom and Dad. We decided that while on treatment Charlie would be much better off in a familiar environment where the teacher to child ratio is better than 1:30. Primrose's Kindergarten program is accredited and the ratio is 1:12! This allows the teachers to work with him more closely and help us by providing feedback on his health and demeanor during the day. We talked to both of his teachers about his Leukemia and things to watch. Here is a list of things we learned at Kindergarten orientation that I am excited about:

• His Teachers are Miss Melissa and Miss Amie
• They go to the Smokey Hill Library twice a month
• They adopt a grandparent from a local assisted living facility (not sure about going here when ANC is down)
• Scholastic book club (I've missed this and love picking out new books)
• Every week there is a Star Student Award. The student is featured for the week and gets to take home a teddy bear and take pictures of him with the student's family and then talk about it in class. Kind of like a flat Stanley situation.
• They will Journal everyday
• One of the teachers is also a trained Behavior Therapist! This is similar to the child life specialists at Children's hospital.
• They use the Pyramid Model for discipline and development. From what I have seen it is very much in line with Parenting with Love and Logic and I think Charlie will do well. No more 1,2,3 or Jelly bean bribes!! http://www.challengingbehavior.org/do/resources/backpack.html

Overall Charlie's first day was great, but he did come home with a pretty nasty goose egg on his head from falling and landing on his forehead! Its funny and ironic that the first day of kindergarten he has an incident that probably scared his teachers half to death since we told them he doesn't clot or heal very well. I talked to Miss Melissa when I picked him up and she felt awful and was so worried about the bruising and possible concussion! The pictures above were taken pre-head wound.

Tegaderm Advanced!

The last few visits we noticed a new Tegaderm design. So I looked it up online. From the website:

"3M Health Care today announced the launch of 3M™ Tegaderm™ I.V. Advanced Securement Dressing for patients, a comprehensive solution with transparent, breathable film, a stabilization border and new, comfort adhesive technology. The new dressing is perceived by clinicians to reduce catheter manipulation and resist staining which could lead to less frequent dressing changes, and may provide a cost savings option for hospitals."

COST SAVINGS FOR HOSPITALS!?!  Who here remembers the COST of a regular Tegaderm? Anyone? Oh Yeah it's $17.53 - for one Tegaderm! I am dying to request a itemized bill from 8/14 just to see how much the new version is SAVING the HOSPITAL. insert screaming here.

Charlie's first NFL game

A few weeks ago, Angela and I attended a dinner put on by the Leukemia and Lymphoma Society that was served as the official kickoff for the Light the Night Walk that we will be doing with Charlie in late September. It was an inspiring event which contained a lot of information about the great and innovative things LLS is doing for families like us and individuals like Charlie. I hope to be able to pass along some of the information they presented to those of you who keep tabs on Charlie’s journey. I just have to find the time . . .

As we sat down to eat, we were approached by a member of the Patient Services department of LLS. She had a pair of Broncos Pre-season tickets that were donated to LLS and she wanted Charlie to go to the game. So on Aug. 18th, Charlie and I left the babies with Mom and Nana and prepared ourselves for a Night of Manliness. Actually, I was prepared to be heading home by half-time and not just because that’s when the starter would not be playing any more. Usually Charlie asks to go to bed by about 8:30.

Due to a forewarning on the lack of parking spaces available, we had to park a considerable distance away from Mile High. As we started our long walk, Charlie spotted some enterprising young fellows driving bike-cabs back and forth for a small fee. After we watched some poor dude load up two adults and three kids into his cab, Charlie and I piled into the next available ride. I think this was Charlie’s second favorite part of the evening.

Inside the stadium we sat through all the pregame ceremonies. Charlie got a lesson in standing quiet through the National Anthem. Some other highlights included the fireworks and pyrotechnics that preceded the team’s entry to the field and the skydive team that dropped in right over our heads (I have a video of that I can post to our Youtube Channel, very cool). Once the game started, that was pretty much the end of Charlie’s interest. During the kickoff, Charlie had to go to the bathroom and two plays after we got back to our seats, he asked to go home. It was a little sooner than I expected, but we managed to make it through the first quarter with the help of Charlie’s favorite part of the evening. That was watching the “slightly” inebriated lady sitting two rows in front of us “shake her booty” (as Charlie says) every time the Broncos made a good play. We picked up a six dollar bag of M&Ms for the ride home on our way out of the stadium and caught the next bike cabbie back to our car. Charlie had a great time and he even made it to bed around 8:30.

The Ups and Downs of Absolute Neutrophil Counts (ANC)

It's been awhile since we got all medical in posts, so it's time to lay on the intelligent stuff. The picture above shows the last 18 months worth of ANC's or Absolute Neutrophil Counts. Neutrophils are key components in the system of defense against infection. An absence or reduced number of neutrophils (a condition called neutropenia) makes Charlie vulnerable to infection. Note all of the low points on the graph above. After chemotherapy, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature. A sharp rise in neutrophils can also indicate infection in that your body is creating the extra white blood cells to help fight off that little runny nose or nasty cough. Typically  a "safe" ANC is 500-1500; a low ANC is less than 500.  Charlie has fallen in that "safe range" about 1/3 rd of the time. When his counts are not in the normal range the oncologists bump up his meds so the chemo is therapeutic enough to do  its job and get the body to stop making cancer cells. When the counts are really low like in Feb of this year, they stop the chemo and let his body catch up.  Bottom line he is all over the place. The doctors assure us that it is in now way an indication that he might relapse, its just that his body metabolizes the drugs at different speeds as he grows. Charlie has to go in for blood work on Tuesday. They held off on bumping his dosages until they could see, mid month where he stands on his ANC. I really hope that he is in the normal range. He is on so many pills on a nightly and weekly basis. They all make him sick and tired and cranky and it is worse when they add more pills to the mix. Here's hoping for a good number like 1100! Wanna take bets or run the statistical analysis?

Cycle 9 of 12

Cycle 9 of 12: Every three months starts a new "cycle" for Charlie in Chemotherapy. Every 3rd visit they inject chemo into his spinal column in addition to the normal "drip" chemo. Charlie gets to take a "nap" during the procedure because they knock him out with propofol, Yep the same stuff Michael Jackson used to catch some zzzz's. This visit he fell asleep in the pre-op room even before he got into surgery! Such a tired little guy. The photo above on the right shows our little superhero snoozing after his tubies. TUBIES!!!! Charlie was amazing, fantastic, crazy good at having his port accessed this month. It makes me tear up just thinking about all of those screaming fits he would throw. It also makes me want to hug the mothers of the younger kids in clinic and tell them, "I PROMISE you it will get better, I didn't believe it when he was 3 1/2, just like you now, but it will get better. Just look at my rock star 5 year old!" So Charlie was great for tubies and very sweet and cooperative with the nurses and doctors in the procedure room. The picture on the right shows one of the nurses checking his MRN number on his armband and matching it with the dosage of chemo that was delivered from the pharmacy. Yep that's him, and he'll only have to do this 3 more times! ( I know Dr. Albano... he'll probably have more Lumbar punctures in the monitoring phase, but for now, in my mind, due to the cycle numbering it is 3! get it!)

Splash Day Every Day!

I was just thinking that it had been quite some time since we received a "Primrose Email." The directors send funny little emails  and pictures to us every now and then. The context for this note was that last Friday Ana was the only baby in the infant room ALL DAY LONG. She must have been spoiled rotten by Miss Roni and Miss Renee,  her "teachers." I heard that she visited each of the big kid classroom including Daniel and Charlie's classes. The Splash day further explains her wardrobe change that day :)

The Text reads:

Hi Mom and Dad,

     After these pictures were taken, they really got me thinking about my future aspirations.  I wanted to propose some ideas I have to you, so I waited a few days to make sure I had my thoughts together and could put them down on “virtual paper”…So here we are!

     They say it’s good to have goals. Some people want to be doctors. Some want to be lawyers or vets. Right now, I just want to be a toddler! Here are some of my preliminary goals:

1)      Find a way to maintain the 1:1 ratio that I had on that day EVERY DAY! I loved not having to contend with anyone else for bouncy seat time or make Exersaucer reservations.

2)      Since I was the only baby, Ms. Renee let me hang with the toddlers and do Splash Day, so I also vote for Splash Day EVERY DAY (at least until temps dip below 84 degrees)

3)      Find a way to convince babies and toddlers alike that rolling your onsie up to create the belly shirt effect should be considered a fashion statement. I’m not saying it’s a “go” for everyone. I mean you have to draw the line on what’s socially acceptable. Spandex and belly shirts are not for everyone, but I mean, I’m cute and make this “half shirt” look good!

Ana is 8 months

Happy 8.5 months Ana! The picture above was from the end of July, but it is too cute not to highlight on the blog. Chad laughs when he looks at it, says she looks like a muppet! Did I mention she's crawling.... oh and pulling up, feeding herself cherrios and essentially zooming out of baby-hood! Ana is now the oldest "baby" in the infant room at Primrose. She's going to be a year old in no time.