Thursday, February 25, 2010


For the last month every breath I have taken has settled deep into my chest, weighing me down and crushing my every step. Everything beautiful seemed cruel and daily tasks became painfully redundant. The world stopped, and I wanted nothing more but to turn it back further into time when my son was a tiny baby full of promise and potential. Each night as I have tucked him in I've lingered just a bit too long at his bedside, planting kisses on his warm cheeks and whispering promises and prayers over his head. Today Tish and I took JT to CHOC to learn more about JT's brain tumor behind his right eye. Always a joy to be around, JT skipped into the MRI room and held his own sedation mask, pretending to sleep immediately and stealing smiles at the anesthesiologist. Everyone was smitten with him, his personality is infectious, and as he faded into twilight his hand dropped limply from mine.

He was heavily sedated this time around and struggled into consciousness, crying and shivering, only to fall back asleep sporadically over my shoulder. Time ticked by slowly and soon he sat up with that gorgeous smile, asking for a popsicle and apple juice. His tears already forgotten, we wheeled him across the hospital to see Dr. Loudon, his pediatric neurologist. Tish and I nervously sat passing the time as JT happily played on the floor. Soon it was his turn, I walked into the exam room and prepared for the worst...

Dr. Loudon swooped in with a smile and a firm handshake. I immediately asked what was going on with his eye, and Dr. Loudon looked at me completely perplexed. His eye? What about it? I asked if he had reviewed the MRIs yet and he said he had, and what was I talking about. I said his neuro ophthalmologist diagnosed him with a brain tumor behind his right eye last month and Dr. Loudon immediately brought us back with him to his computer and reopened the scans. Tish and I stood there awkwardly, stealing meaningful glances and assuming that at any moment Dr. Loudon would turn to us and say oh there it is. Instead, after taking a very thorough look, he turned and said he had no idea why his eye would be bulging because there is no tumor. He then suggested I find a new eye doctor.

What could I even say? The moment was ridiculously anticlimactic. I had a list of questions about tumor fighting drugs and radiation therapies, and instead was being referred back to a normal pediatrician to test for simple non-tumor related eye issues. My heart was exultant, but my head wont let the news sink in. If I believe it is true am I going to have my heart broken again? I feel vulnerable and suspicious, jaded by years of bad news I don't know how to be grateful for amazing news. We left the building and walked toward our van, laughing and chattering as though nothing had just happened. Nothing happened, the world never stopped, it was there all along, and suddenly I can breath.

Wednesday, February 3, 2010

And so it begins...

I am angry at the Universe. Angry at God. Angry at my husband, at the doctors, at myself, and at anyone around me who doesn't realize the sky is falling. This isn't about me, my anger is self centered and pointless. Right now I need to be the facade that shapes JT's perspective. The rock that teaches him resiliency. The lie that tells him everything is okay.

My son JT is the 5th person in my family to be born with NF2, and I had convinced myself that with technology advancing as rapidly as it has there would be some sort of treatment available before JT even grew a tumor. Everyone else in my family started growing tumors around their pre-teens. So why was my baby diagnosed with a brain tumor yesterday?

In November Tish and I both noticed JT's right eye was bulging. (If you are not up to date on why this is a problem you can catch up here) I fought to get him in immediately at Dr. Borchert's, and he was kind enough to squeeze us in after the rest of his appointments yesterday after 5. I sat quietly, assuming he would turn and tell me JT is fine and it was a case of over bearing motherhood. Instead he turned with a concerned look and asked when JT was going to have MRI's. He goes in the 25th of this month and the doctor said that is really good because.... JT has a tumor behind his eye in his brain. The doctor wrote, "[The tumor behind his right eye] swells when tired because blood vessels in the tumor drain slowly after lying down." He needs an MRI to find out the size and type of tumor. Tumors are named for the type of cell they originate from, and there are several different types of cells behind the eye. The doctor assured me that NF2 tumors behind the eye are generally benign and slow growing. I have been assured by doctors one too many times in my life to swallow his placations.

My concern is that there was a marked change in appearance in JT's eye from only November to New Year's Eve when Tish saw him and was immediately concerned. She hadn't seen him and the change was more apparent to her than to me, being that I see him every day. Until the 25th I have no real answers, and even then will most likely be advised to simply "watch and wait."

I am flooded with prayer promises and I cannot help but fleetingly think they are nothing but words to keep our empathy busy. How many prayers does it take to get an answer? Yet as I form the thought I pray for forgiveness for that weakness of faith. To this God whispers a hug, the God I know only loves us more when we are angry.

Now is not the time for childish suppositions of invincibility, now is the time for reality. Obviously JT has a complicated case of NF2. Developing tumors pre-pubescently generally means a person has a severe case, what does that mean for JT today? Absolutely nothing. What does it mean for him in a year? I cannot answer that. The worst part of NF2 is the idea that you are always broken but never really sick. He is not in pain nor is he going to have treatment any time soon. When faced with a challenge as a Mother I want to meet it head on, and instead I can do nothing but watch as my child grows more tumors and lives their consequences. I look at JT and I see his potential. He just scored in the 84th percentile state wide on the standard testings, he taught himself to spin like Michael Jackson on the ice in an hour his first time skating, he is ridiculously handsome and so amazingly special. I have a deep rooted and hopefully irrational fear that the Universe wants to claim him for itself, too bright a star to walk amongst us.

So I pray, and I feel that I am doing something, anything, rather than absolutely nothing.

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