Here's the scoop

This all started two weeks ago, when we went to have Alexander's gait evaluated. We had noticed that Alexander was not using his right arm much and that his right toe would drag every once in a while. Dr. Sink at Children's told us that there was something definitely going on and that he suspected one of three causes: vision, brain tumor or mild cerebral palsy known as monoplegia. He ordered an MRI and was glad that we already had an eye appointment set for Alex. Last Tuesday, Alex had an eye appointment and they found that his right eye is twisted. We took this as good news thinking that it explained alot of Alex's presenting issues such as head tilt, constant balancing, etc.

Yesterday, we had the MRI. They found a brain tumor at the base of Alexander's skull around his brain stem. They think it is a juvenile pilocytic astrocytoma which responds well to low dose chemotherapy over a prolonged period of time. The tumor is the shape and size of a man's thumb. Alex will have brain surgery Wednesday afternoon so they can get a sample of the tumor and verify their diagnosis. If they are correct and the five hour surgery goes well Alex will be hospitalized for 3-4 days and then will have chemotherapy once a week for a year.

The tumor explains all of Alexander's symptoms - head tilt, twisted eye, mild facial weakness that causes drooling, hoarse voice, consistent throat clearing, droopy eye, and the weakness on the right side. Depending on which doctor you talk to, these symptoms may improve after chemo or may not. The surgery is not meant to remove the tumor because it is too close to the brain stem which is vital for life. Alex will not have to have his head shaved and the chemo should not cause nausea or hair loss.

Steve was on a business trip last week and learned about the tumor in a Boston airport yesterday. We are both reeling from the news and have not quite grasped it all. Our pediatrician, Dr. Jody Mathie has assured us that Alexander's Neuro-Oncologist, Dr. Foreman and our Neurosurgeon, Dr. Handler, are the best available. Our prayers at this time are that their diagnosis is correct and that the surgery and chemo treatments go well. The dangers of surgery include infection, neurological damage and hydrocephalis. Alex will be in a great deal of pain after the surgery because they are moving the muscle that connects the head to the neck.

Our goal now is to maintain normalcy for Alexander and Zoe. Alex has doctors' appointments Monday, Tuesday and then the surgery on Wednesday. We will be in the hospital for the rest of the week. Please use this blog to post your comments, we just can't be on the phone talking about this with everyone. I hope you understand. I think I will postpone doing all the household chores I have today and sit, snuggle, play, read, love my children and pray every chance I get. This is absolutely the hardest thing I have ever faced.

Steve will be working from home next week and I don't know what I'll do about work yet. My mother and sister plan to be here Tuesday night. Alex will not be in school next week either.

Please pray for our beautiful little boy. He is such a wonderful child and I have always said I am blessed to be his mom. Pray, just pray for his wholeness, perfection, health and future. Thank you. God bless.

Gwendolyn