Clinic Day #32

April 22, 2010

It was a long, but pretty uneventful clinic day. We were there for nearly four hours to get five minutes of chemo, but sometimes that’s the way it works. It was standing room only and the doctors and nurses were literally running from room to room. Tanner’s beloved Nurse Carie was out of commission; she had dislocated her shoulder and was on desk duty. Tanner was a little nervous about Nurse Chris accessing her port, but did really well with it.

Her counts were actually high – 2,100 – higher than the doctors like them to be. They did raise her chemo, but only half of it. They bumped up her 6MP to 100% dosage, but not her methotrexate. The hope is that she’ll come back down to acceptable levels, but not bottom out before our Disney trip. We go back in two weeks, right before our trip, to check counts. I’m slightly stressed about the trip getting messed up by the upped chemo, but trusting the docs know best and also keeping in mind that counts that are too high allow leukemia cells to creep back in. Medicine before Mickey, you know what I mean?

Spending that much time sitting in the infusion room means the chance for me to chat with the other parents and Tanner to make friends. She brought a coloring book and crayons out to an adorable little boy named Ian who captivates Tanner and me nearly every visit. Then, she played Barbies with another 6-year-old and then, they shared an infusion chair while they played Wii.

I talked Disney with a couple of Moms to get the low down on Give Kids the World Village. And found that one’s little boy has been coming for treatment for four years due to relapses. The other has a sweet little one-year-old that is asleep every time we see them. She said they give him drugs to put him to sleep until several hours after his treatment or he throws up the whole time. I overheard two other families talking about brain tumors that were affecting their children’s sight and the surgeries they had gone through to try to save their eyes.

Later, an infusion chair opened up and Tanner and moved to the other side of the room where I sat inches away from a little baby and a very tired mom. We began talking and I found out her daughter was six months old and has face cancer. She has been undergoing daily radiation for four weeks and has two more weeks to go. She had already had radiation that morning and had been waiting for two hours for her chemo. The family lives in Chattanooga and has had to stay at the American Cancer Society house. In all, this precious, smiling baby will go through 10 months of chemo and radiation. She was kicking in her car seat, her nose raw and scabbed from the radiation treatments, but still cooing and shaking a little toy with a huge smile on her face.

I asked her mom when her daughter was diagnosed. “She was four months old,” she said.

“Not what you expect when you have a baby,” I said.

“No… I still can’t get my arms around it,” she gushed, looking as scared, tired and overwhelmed as I remember feeling those first months after Tanner was diagnosed.

I assured her that you do get used to it. That there will come a day when you don’t wake up every morning and think, “How did this happen? Does my daughter really have cancer?” You’ll just accept it.

And, the truth is, you do accept it and it gets a little easier when you’re not shocked every time you look at your child. But, it’s not what any of us expected… whether our kids were four months or 14 years when they were diagnosed. Not one of us ever expected to hear the words, “Your child has cancer.” It’s unimaginable, but the craziness in clinic today is testament to the fact that it happens all too often.

If you have been a long-time reader of Tanner Time, you might remember that Matthew West, a Christian recording artist, and his family came to our house one night to bring us dinner and sing some songs for Tanner. Tanner loves the CD that he left for us and we were playing it in the car the other day. There is a song on the CD he wrote for his daughter, Lulu, when she was born. It’s a beautiful song, but I have a hard time listening to it anymore because the lyrics tear at me.

The world’s a scary place here

But baby it’s alright

I’ll make sure the coast is clear

So you can just sleep tight

But if you’re afraid of monsters

Like everybody is

I’ll be right beside you

Closer than a kiss

Safe and sound
You’re here with me now
Like we hoped you’d be
Safe and sound
You’re here with me now
And that’s all I’ll ever need.

Here’s the thing about this song. It’s the way every parent feels. It gets to the core of what it is to be a mother or a father… to protect your child and make a safe place for them to grow up. But, in that room today, I saw dozens of kids whose parents would do anything to make them safe again. To make the monsters go away. But we are helpless to make it better. To soothe away the bad dream that is cancer.

So we trust our doctors. We accept that our child has a life-threatening illness and try to make their lives as normal as possible. We give medicine we don’t want to give. We watch for side effects we wish didn’t exist. We pore over lab results and pray we don’t hear bad news from the doctor.

But, mostly, we try to make sure our kids feel safe and sound… even if we know they’re not.

Beth