Danzilla

One of our many pet names for Daniel is "Danzilla." It fits even more so now that Charlie has found the Godzilla cartoons from the 1970's on Netflix. We hear quite a bit about God-zuki in our house. One of my old coworkers gave Charlie this elaborate dragon outfit a few years ago so I pulled it out of the closet for our "middle" monster.

A Good Side of Leukemia

I know the title of this posting may seem strange to most of you, but there some good experiences you can take from an awful situation.  Charlie’s monthly visits have become some of those experiences.  For one, these trips are a lot less stressful now that Charlie is completely fine with getting his medi-port accessed.  In fact, besides the whole hospital thing, they are almost completely enjoyable.  Yesterday’s chemo trip was a perfect example: 

I left work about noon to pick up Charlie from school.  I try to grab him for lunch since he likes to eat at the hospital cafeteria before his appointments.  However, this time he requested Chic-Fil-A.  So we had a pleasant lunch at the nearest location talking about recent school activities and Godzilla.  Charlie even got a chance to play on the playground.  When I went to retrieve him from the hamster-cage-like maze of tubing he was crawling through, he politely informed his new friends that he had to “go get tubies” (of which, they were completely clueless about) and we made our way to the car.  Charlie happily walked into the hospital, stopping briefly to watch some kinetic artwork they have on display in the lobby before making his way up to clinic.  In the waiting room Charlie got to play some video games.  During his appointment, he met some new doctors and had a great conversation with them.  When it came time to take care of business with Nurse Sally, he did so without incident.  You can even see from the picture that he wore his mask while getting accessed.  This is a part of clinic protocol that Charlie has, up to now, been unwilling to comply with. 

Throughout the whole day, Charlie conducted himself with excellent manners: “please”, “thank you”, “you’re welcome”, “nice to meet you”.  We know he’s a nice kid, but we rarely get to see such prolonged instances of it before a complete meltdown occurs.  Nurse Sally brought us some great books to read while we waited for counts and after we wrapped everything up, Charlie politely asked to get a toy out of the toy chest.  It was a request that Nurse Sally was all too willing to grant.

I think Charlie really enjoys this special time he gets to spend with either Angela, myself or sometimes both of us.  With all three of the kids, we hardly ever get time to devote 100% to just one of them.  I have grown to enjoy these times as much as Charlie has.  This trip was especially memorable because I got to experience Charlie’s company not just as my kid, but as this great individual, pleasantly interacting with me and other people.

Who is that masked young man?

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.