April 14, 2010

This may have been the longest I’ve gone without posting since Tanner has been diagnosed… 6 days. It’s weird, but things are so normal I feel like don’t really have much to say. Tanner feels really good and looks really good and, mostly, seems like every other kid.

Then, there are moments when I see our life from an objective viewpoint and it hits me that none of this is really normal… it’s just what we’re used to.

For example, last Thursday night, John was preparing Tanner’s nighttime meds and said, “Good grief, am I right with all this she is taking?” He was staring at our medication spreadsheet, taped to the inside of entire double-wide kitchen cabinet dedicated to medicine, mostly Tanner’s. I usually update the spreadsheet about every 2 weeks, after clinic, to be sure we’re current on everything she takes (really, it’s that confusing), but I’ve been kind of slacking lately with the move and all, and he wasn’t sure what he was seeing was correct. I assured him it was. Thursday night sucks. She takes ½ 6MP pill (daily oral chemo), 5 methotrexate pills (weekly oral chemo), 2 neurontin capsules (for neurapathy due to the Vincristine), mepron (a daily antibiotic that prevents a dangerous type of pneumonia), omnicef (antibiotic for the urinary tract infection), claritin (for allergies), pepsid (for the stomach problems that all these meds cause), and zofran (anti-nausea med to prevent the nausea that the methotrexate usually causes overnight). As you can see, nothing normal about a 6-year-old taking all this, and that’s just her nighttime meds.

Today, I spent hours on the unfortunate task of trying to untangle the last month’s medical bills. All of our deductibles have rolled over, so I’m forced to pay close attention to the bills again to be sure we are paying the correct amount. It’s a nightmare matching up the EOB’s from the insurance company and the bills from doctors and the hospital. In the stack, I came across an old bill that had not yet been filed. It was from one clinic day back in the early November – the dreaded first day of the second half of delayed intensification. We stayed at the hospital from 8 am to 6 pm that day, getting every kind of chemo but the kitchen sink. The bill was a testament to the fortitude of my child, to her desire to thrive and survive. Three pages of chemo, listed on line after line. It reminded me how much Tanner’s body has already endured and worried me about how it will effect her long-term.

Tanner came home yesterday SO excited about a birthday party invitation from a little girl in her class. It is at Jump Zone; and we have not allowed Tanner to go there since diagnosis. She was so hopeful, but also was aware that she might not be able to go. I could see on her face how important it was to her… how desperately she wanted, needed to feel normal… to just go to a birthday party like the other kids. I told her I would have to talk to John that night, as he is out of town. That night, we decided that she could go as long as I stayed and applied some hand sanitizer every once in a while. Tanner was thrilled and accepted our stipulation. She was so funny, though. She said, “Dad’s not coming though, right? Just you? Cause Dad will be so crazy with the hand sanitizer.” I laughed and laughed. She’s exactly right. It will be much less embarrassing if germ-a-phobe Dad stays home (love you honey!). So, we’re so happy she’ll be able to go, but there’s nothing totally normal about your Mom lurking in the shadows with hand sanitizer.

So, it’s not really normal, but it’s cancer normal. And, for cancer world, she’s probably about as normal as possible right now. We’re planning for summer camps and our trip to Disney and the Spring Fling at school. We’re grateful and it’s a relief to not feel like we’re in crisis mode, even if it always seems one fever away. I see things ahead that don’t involve hospitals and isolation, but are just normal things that kids and families do. It’s not normal by most people’s standards, but we’ll take it.

We received some awesome news this week… we can get another dog!!! Yay!!! I don’t know who is more excited, me or the kids. We’ve picked out a dalmatian mix from McMuttigan’s rescue in Kentucky. The trainers are child-testing the dog this week and will let us know if they believe he will be a good candidate for us. He is in a three-month training program in a Kentucky prison and will be trained especially for us, by prisoners, by the time we get him in June. We will also know he has been thoroughly vetted over the past three months, so he should be safe for Tanner. So, cross your fingers that he is bomb-proof; we already feel attached to him. If you’re in the market for a dog, consider this program… it’s such a win-win for everyone. The last time we almost got a dog from this program, the prisoners were pouring extra love into the dog we had picked out so their “little angel” would get the best dog possible. Blessings come from the most unusual sources sometimes.

Sorry for the long post… guess I had something to say after all!

Good night,
Beth