May 16, 2014

In two and a half years we will have a cancer-free son! He started maintenance this past week. We have an official "cure" day. May 16, 2014. A meer month before he turns 9. I can't wait for that day. SERIOUS celebrating will be going' on up in her'! I know it's a long, long, LONG ways away still but at least there's a date. We're so proud of Carter for being so strong, brave, and positive throughout all of this. We could not have been blessed with a more perfect son. By Christmas he'll have a short little buzz cut! It's already looking great. When you rub his hair (which is as soft as a newborn's) you can feel little spikes of new hairs coming up. I can't tell if he looks like a cancer patient anymore because to me he has a TON of hair. But then, I think if I saw him like this 9 months ago I would have been horrified.

He was diagnosed with Leukemia 8 months and 17 days ago and now he goes into his final cycle of chemo. What to expect for the next 2 1/2 years is this:

--> 5 days of steroids a month (3 pills in the morning and two pills at night). They cause insomnia for about a week. Sucks.

--> 1 prevacid each morning (helps with stomach acid which is caused all of the other meds)

--> Mercaptipurine nightly (a type of chemotherapy in pill form taken at least two hours after dinner with only water... I have to set my alarm every night. So annoying. Because it's chemo you can't touch it with your fingers... yet I willingly have my son swallow it. Weekends he has two pills at night. This one makes him kind of sick. I don't like it.)

--> Methotrexate (another oral chemo-- again, can't touch it) every Monday (with a few exceptions). 6 1/2 pills at night.

--> Each chemo visit will consist of Vincristine through his port.

--> Each chemo visit will also consist of an hour long dose of Pentamodine (an antibiotic to prevent pneumonia... which could kill him).

--> Every three months he has a spinal tap where they give him Methotrexate into his spine and test the spinal fluids for cancer. (these are the Mondays where he won't take his Methotrexate at home)

There is a chance that some of these will be switched up a bit if he doesn't react well to them. For example, the Mercaptipurine caused serious elevated liver counts last time he took it. He had to take it for a month last time and by the end of the month one of his liver counts was 875 and in a normal person it's 25. Left that high for too long there will be permanent liver damage. If he does that again this time around they will have to change it up with another drug. The one that they would use would probably be one that causes serious hair loss and nausea. (Although last time he took it he didn't get real sick... but went VERY VERY bald.) Only time will tell though. Just because he reacted a certain way last time he took a specific drug doesn't mean that he'll react that same way this time around. (Annoying, right?)

I have mixed feelings about his hair coming back in. Him being bald is a very visual reminder that he has cancer. Once his hair is back in then people won't be as careful but he'll still be as sick... you know? But, it's fun to watch his hair come back in. It's pretty light. I think it'll be a dirty blond. Much lighter than before. But there's still time for a curve ball with his hair color.

Here's the video of what we think of Carter going into maintenance. Be sure to mute the music so you can hear it... actually, we're pretty loud. :)