*Shakes fists at the sky*

Phew. A blog update. It’s been so long it’s embarrassing; however, some serious life events have happened—so, I do have those as excuses to fall back on.

Straight to the punch.

My littlest, Aella, was recently diagnosed with Ewing Sarcoma. It’s a super rare bone cancer. And even more rare for her age. It presented itself as a 6cm tumor in her spine. We found out when she was 16 months old on Memorial Day. She lost the ability to walk and use her right leg. She lost the ability to use the bathroom on her own. These past few months have been a nightmare.

Aella began walking when she was 10 months old. When this happened to her, she was almost running. She was my little climber. Unafraid. She didn’t sit on the rocking horse—she stood and balanced with no hands—staring me down as if daring me to challenge her. She climbed chairs and tables and was well on her way to climbing her brother’s bunk bed. I, of course, was terrified of her getting hurt … but she could do these things.

She danced. A lot.

Within 24-48 hours, all of that was taken away as the tumor grew just right and compressed just the right nerves. Within hours of the MRI, she was swept away into surgery to have her spine opened up and as much of the tumor removed as possible to save her nerves. They couldn’t get it all because it had grown between her vertebrae. We waited impatiently to see if it had spread to any other part of her body.

A few weeks later, she had a port surgically put in her chest for chemotherapy. She was having multiple issues and ER visits due to the Foley catheter which was supposed to help her urinate. She got a virus and a bacterial infection after her first chemo treatment. We learned how to do straight catheters. She got chemical burns from the chemo in her diaper  since she stools every time she cries (we change about 20 diapers a day). We learned from the wound care team how to prepare for chemo stool—they’d not had to do this before. Every child is different. Currently, we’re only 3 chemo cycles in. Cycle 4 begins next week. We have 14 more to go plus radiation which is a super long process. And that’s just an educated guess.

BUT … slowly, movement has begun to return to her right leg as the nerves begin to heal from the surgery. She has hip and knee movement. We won’t expect ankle movement due to where the tumor still remains—however, she is getting stronger every day. She still giggles and smiles a lot. If we’re home, she swings in her little blue swing and rides around in her little blue push car. We take a lot of walks. She cooks in her little kitchen and stacks her magnets. She plays. She naps and recovers. She eats a lot. She’s a happy baby—most of the time.

Where am I in all of this? Where is my writing? Where is my art?

I’m a full-time mama now. I quit my job. I go to doctor appointments and chemotherapy. Aella has attached to me more than ever. She is almost always in my arms. The only time I have to write is during her naps. At night, I’m too exhausted to write. Maybe… when this becomes more regular… I’ll gain that energy. Who knows? The Immortal Witness should be ready soon as it was proofread recently. I’m doing one final comb through. Slowly. One nap at a time. Then cover art and interior design. I was hoping to go to the PNWA conference this year, but it looks like I’ll be doing radiation therapy during that time. There’s always next year. No worries there. Aella is way more important.

If you’re still reading this bit of sad tale, 1) you’re probably my mom. 2) you’re not my mom. Wow, go you. Emotional powerhouse. I wouldn’t want to read someone else’s sad cancer-baby story. That’s just too... sad? 3) But honestly, I’m hoping it isn’t a sad tale beyond the obvious.

Yeah, yeah…  baby cancer. I AM angry. I’ve cried. A lot. Shaken my fist at the sky. Researched until my eyes crossed. Only 200-250 kids (5-20 years old) get diagnosed with Ewings each year in the U.S. Under the age of 2 years old, AI says it’s about 10 or less. That means Aella is 1 in 10 really freaking unlucky babies! So yeah! I’m freakin’ angry. Why her? Why me? Why my baby?

When this whole thing kicked off I couldn’t say I knew where my life was going. I had hopes. I had little buckets for my life. Little silos. Identities. Military. Corporate. Writing. Art. Family (Husband, Kids, Extended). Financial. House. Pets. Fitness. Self-care. Friends. Rotary. The Storehouse (local food bank). And so on.

Then it quickly became one thing – Family.

Stress and anxiety exploded. Every move Aella (and even my son Atlan)  made put me on edge. I couldn’t sleep. I am such a control freak, and this was the first time I couldn’t do a thing to change the course of what was happening. I was also watching everything else in my life—all my little identities—slip away. I had to be there for Aella in a completely new way. But I was also loosing myself.

I believe Aella will beat this. I now know way too much about cancer than I ever wanted to know. But I also know she’s in good hands and surrounded by love.

As she and I trudge through this next year, and she’s battling one heck of a battle, I am also reforming. Priorities are shifting. New roots are growing. Hope blossoms here and there. What I’ll come out as on the other side of this… only time will tell. All I know is that I’m holding this little girl the whole way through. And I’ll write during her naps.