Joey

It was Joe's first recurrence and he was facing 8 months of chemotherapy, lung surgery and all of us were soaked with anger and fear. Then we met Joey on the 11th floor of LCH. A small spit of a two year old diagnosed with neuroblastoma. His formal name was Joseph Michael, the same as Joe's; and he was the only patient our Joe ever spoke to or visited in all of his time at LCH. I don't know why we gravitated to Joey and his mom Maggie, and Joe followed Joey's progress through his treatments and 2 1/2 years of remission. We are not "best friends" with this family, it just evolved into a "I know you are there" relationship. We would keep each other updated on Caring Bridge, and Maggie follows my blog.

This past week Joey relapsed and is back at LCH facing another year of chemotherapy and surgery plus multiple trips to Sloan-Kettering. After this long I was stunned. I wanted to write her or call; but I knew that would never be enough. So under the guise of delivering donations I made my way back to the 11th floor to see Maggie.

In the hallway, with her hair in a towel and fresh out the shower, we talked, hugged and fought back tears. Our conversation ran the gamut of how this changes your family, the financial strain, the anger, isolation and of course the under current of fear that races through your mind and body with a recurrence. You are simply frozen, but somehow you find the strength to keep moving ahead with hope for your child.

The Dreaded Group

When Joe was diagnosed with cancer we were given an invitation to the inner circle of a dreaded group. The group of those with cancer, or with loved ones with cancer, not something you seek out and desperately want an exclusive membership. We had a gold card membership and became "frequent flyers" at Levine Children's Hospital.

Now, not even a year since Joe has passed away a dear friend has been initiated to the "group you never want to have a membership". Her daughter cried in my arms today asking why my mom, saying not my mom. I held her, rubbed her back and gave her the best words of advice given to me. It is OK to be scared and to cry; and buy your mom a notebook and pens so she can write everything down during the barrage of information over the next few days. Then keep it on hand for all the drugs that will be given as a log so not to miss a single vital dose towards her recovery.

I felt the same pit in my gut today as I did with Joe. I will know their sleepless nights until their questions are answered and a plan is put in place. I know how friends and family will circle them with love and support, and I hope this will be a story with a happy ending.

Moving On In Slow Motion

Many times these past months I have felt life is moving in slow motion. I am not as quick. I struggle in conversations searching for words and even my gait feels as though I am trudging through quick sand. This is the physical and visible part of grief. The more shrouded emotions are deep inside only to be jolted free by a place or a familiar word and always a memory. The pain is excruciating and I struggled to keep it from flying out of control.

It has been less than three months since our son Joe passed away yet it seems like a year. We are moving on, but in slow motion and one tiny step at a time.