Back to the 4th Floor, At Last

Jordan checked out of pediatric ICU this evening around 6:00pm. She’s back in the oncology unit on the 4th floor of Children’s Hospital. She is very happy to be back near a television that has more than one kids channel. When I left, she was engaged in a Sponge Bob Square Pants marathon. Her health was much improved. Other than a little nausea, she was far more lively. It was a good day for the whole family to catch its breath and recuperate.

First, the facts. We had only a brief meeting with the oncologist. Most of the biopsy results are in, but Dr. Finlay is waiting on one last stain. The preliminary diagnosis is low-grade glioma. Glioma is a disease in which benign or malignant cells form in the tissues of the brain. Dr. Finaly did not discuss whether or not Jordan’s glioma is malignant. That will be further addressed tomorrow. He did, however, remark that (a) radiation therapy was unlikely, (b) her case presents as more of a chronic condition, rather than a life-ending dilemma, and © we caught it early and have a good jump on the disease. Tomorrow afternoon we will have an in-depth meeting with Dr. Finlay and his team to discuss their recommended plan of treatment.

On the human side of the equation, Jordan was stronger today. Her will and personality resurfaced. Though she is pale, with soft circles forming under her eyes, her smile is radiant and effusive. She snuggled with me this evening after we settled into her new room. I sang standards to her. She sang improvisational lyrics to herself. Together, we bore a commanding likeness to Ella and Sinatra, only tone deaf.

The story in the story is the preciousness of community. So many of you have reached out to us and touched us in ways you may never imagine. 10 years ago, Jeanette and I moved into Olive Tree condominiums. We stayed for one reason: we liked our neighbors. Today, I LOVE my neighbors. They have been so supportive. There were six messages on my voicemail from concerned neighbors yesterday. All of them offering to watch Lucas while I spent time at the hospital. These beautiful people keep an eye on us and offer their time and their hearts to help us. We are much appreciative, and so very glad that we live in a loving community of friends.

Others have come to the rescue in heroic ways. Minutes after I posted my earlier entry about second opinions, I received a deluge of emails. My long-time friend, Brette Simon, got to work quickly and connected me with the chief of pediatric oncology at UCLA after another long-time friend, Cheryl Spurlock, helped me navigate the UCLA medical infrastructure to identify who to contact. Shortly thereafter, I received an email from the doctor and the process has started. This all happened in the space of an hour after my post.

People I’ve never met before are sending me emails and posting comments to this blog. They have offered warm wishes, assistance and advice from the trenches. We have discovered an online community of families dealing with pediatric brain tumors, and have been invited into their circle of support. Parents of children with other serious illnesses have shared their stories and offered words of encouragement. I have never felt so loved or so connected to the fabric of community.

Thank you to everyone. I share all of your comments with Jeanette, and often Jordan, too. Yesterday was a bad day – one of many to come. We survived it. I’ve had my tantrum. I’m certain that I will have many more. And I’m sure Jeanette will have hers in the days that follow. It helps to share our experience with you. Your concern and your good faith make a big difference.