Living in the Middle

You met me at a really strange time in my life.

I'm not in the throes of it all, but I'm not so far away that I can't still smell it wafting through the air. I don't know if I'll ever get that foul stench off my jacket.

I'm living in the middle, but it's hard to walk that tightrope.

I keep making plans for the future. The distant future. The future where our kids will have to fill out their own medical histories and will have learned to spell all of those things that once coursed through their veins. The future where there are graduation parties and weddings and grand babies.

The future where they take us, old and fragile, to the doctor. The future where they plan our funerals, and not the other way around.

But part of moving ahead is knowing where you've been, so I can't let myself get too comfortable daydreaming.

I don't want to think about it coming back, but that doesn't stop my mind from going there. The further out you get, the chances of it returning go down. But that isn't much comfort for the parent whose child happened upon it in the first place. Chances were slim back then, too.

There's only one thing I know for sure: no amount of shampoo is going to get that smell out of your hair.

When Can I Get a Tattoo? The Peculiar Everydayness of Cancer

Dumbledore is back with more wisdom. And visions of ink.

It’s not Little Warrior that wants a tattoo. It's me, the mama.

I have somehow managed to make it 41 years without a single tat. I’ll be (finally) graduating from seminary in December. I want a tattoo!

(What, you think ministers are immune to the subtle temptation of ink?)

A bunch of my friends all went and got tattoos about three years ago. I wanted to wait til I graduated. A couple of months later, Little Warrior was diagnosed with a relapse. She wound up needing several infusions, but none of my friends could donate blood, because of the tattoos.

Now, it’s not the worry of needing to donate blood that holds me back. A) There was plenty of blood in the blood bank and B) They don’t let parents directly donate blood anyway.

Why? Well, that brings me to what’s holding me back on when I’m going to get a tattoo.

They don’t want parents of cancer kids doing direct donations because god-forbid, they may need to donate bone marrow or a kidney to their kid somewhere down the line. Apparently there’s a small but real risk that if they get your blood, their body might make antibodies, which would then attack the bone marrow or organ.

So, a seemingly simple decision – Do Ya Wanna Get a Tattoo? – is complicated by … You Want a Tattoo? But What If Something Awful Happens and You Need to Donate Sumpin’ to Yo’ Baby Within the Next Year?

Summarized as:

“Are you feeling lucky, punk?”

It’s not big. It’s not dramatic. We’re 2 years + past ending treatment. Life gets back to normal and silly things like tattoos become something you think about again.

It’s just an example of how cancer becomes this very mundane everyday thing affecting all aspects of our lives.

The Bestest of Anniversaries

Annie Bares Thomas is celebrating a milestone that we wish all parents could celebrate.

Tonight we celebrated Isabelle's 10 year anniversary of being off treatment. After tucking her in to bed, I went out onto the back patio and had a good, long cry. Earlier tonight, after a celebratory dinner, we looked through the scrapbook I made of Isabelle's year in the hospital. It was filled with beautiful, smiling faces of children who brought us so much joy during the dreary days while inpatient. Flipping through the pages, I realized that most of the other children pictured are no longer alive. I cried once again for Lacey, for James, for Irene and for Silvia. For sweet little Marcus. I cried for their mothers, and our sisterhood, of holding each other up during our darkest hours. I cried the most for the children who I could picture, but failed to find names to match their faces. I wanted so badly to remember their names. I cried for the agony I can only imagine these children's parents must feel every minute of every day.

And, I cried out of joy and gratitude. I have this incredible, funny, brilliant young woman who I am honored to call my daughter. I rarely think about cancer most days, but tonight, it consumes me. I can taste the hospital air, smell the crappy food, and hear beeps and buzzers in my mind. Ten years later, and I can still bring myself right there.

So, although I am an obvious mess tonight, Isabelle is doing fantastic. She seamlessly settled into her new middle school and is making tons of friends. She's excited to go on to state for the science fair, and continues to practice and try her best on the flute. She still hates to exercise, but we've started playing kickball on Sundays with a group of friends and she's finally getting into it. My husband is so proud, as Isabelle is gobbling up the classics from his childhood, reading "Dune", "A Hitchhiker's Guide to the Galaxy" and “The Fellowship of the Ring”. They have their secret "geek" club that I am not a part of, and I love it! They watch Star Trek together, and discuss computer issues that I lack the knowledge or desire to understand. Life is so incredibly good right now that I almost feel guilty. Instead, I try to just enjoy our moment of peace and happiness, for surely there will be challenges around the corner.

Ten years! I never would have thought we'd get here.

-Annie Bares Thomas

Taking Away the Chemo-Crutch

Amber is mom to Julia, another Wilms warrior. The following post is her take on being off-treatment (OT); turns out it's not as easy as you'd think.

End of treatment was definitely a hurdle for us. Julia has just passed the one year OT mark. We felt all the emotions of fear because we were no longer actively fighting the cancer anymore. We also did not have the security of weekly trips to the clinic for reassurance, encouragement, and answers to our questions. There was also a sadness in leaving our clinic family- the nurses, child life staff, art and music teachers, doctors, and other families are a family to us now and it was hard, especially for Julia, not to see them regularly. You feel like a baby bird being kicked out of the nest. It is natural and needs to happen. When you try to fly, you find your wings are damaged from all you have experienced. You will find a way to fly one day. It may not be pretty and it will not look like everyone else, but you will fly. And in the future you will catch yourself soaring above the trees and smiling.

Being off treatment was also the first time we began to really process everything. During treatment, God really protected us from fully feeling what was happening. I would look back and read blog posts I wrote or look at pictures of Julia and it took my breath away- especially the ones from surgery, transfusions, illnesses, etc. God protected us from really seeing her the way she was. I had many days of depression in the months following. Some days we hardly got out of our pjs and got very little accomplished. It's all a part of the PTSD cycle. When you have been through a trauma like this you have to "feel" it and work through it at some point. There are still days of tears or surprise emotions, but as time goes on, they get fewer and farther apart. If you avoid it now it will come back later. Unfortunately, like cancer, this is part of the fire you have to walk through if you want to come out on the other side and begin to walk away. There will still be sadness, especially for the suffering and loss of other kids you know with cancer. Scanxiety is still very real. A fever will never be just a fever and an illness will never be just an illness. We have found ways to get positively involved with other cancer families and causes and it has been very empowering for all of us to be "doing" something to conquer this beast.

The kids also went through their own process. They both had questions and fears about what had happened and it all came out slowly (my other child is 6). It was the first time we really had a chance to talk about everything that happened and find out where they each stood. It took almost a year to wean Julia off the extra TV and special treatment. She also hadn't had much in the way of discipline in two years and had fallen into a bad habit of whining. She was 2 when she was diagnosed and is now 4. We were essentially starting over with her. For about 6 months after treatment our lives didn't change too much. Julia had really low counts at the end of treatment which lasted for 7 months off-treatment. She was hospitalized several times with fevers, even OT, so as long as the port stayed in and her WBC was so low, we kept her away from group child settings and kept her in a stroller in public and a mask when she was out.

It was very reassuring to talk to other moms and find out that they all experienced the exact same thing. They too had days of tears, struggles with their other children, retraining with their child with cancer, fears that pop up, etc. It is all very normal. We have also found that the more we have allowed ourselves to feel and heal, the more whole we feel. We will never be the same as we were before cancer, but we are better people and have found many ways already that God is using this in our lives.

You can follow Amber's blog here.