Much like the boy who cried wolf, I am going back once again on my previous statement about no further testing for Owen. Our goals, comfort and quality of life, still remain the same, but we are still searching for answers with Owen. Next Wednesday, February 1st, we will be taking Owen to meet Dr. Eichler at the MGH Leukodystrophy Clinic.
Yes, you read that correctly, there is a leukodystrophy clinic, with a world renowned expert in the field, located in Boston. Pete and I have been kicking around the idea of a second opinion for awhile now, but the events of a few weeks ago really spurred us into action. I have accepted all of the terrible news we have been given about Owen. When it came down to what I thought were his final days with us, I realized I had way too many unanswered questions about Owen to be at peace with letting him go so soon.
Here is our hope for next Wednesday: we hope the doctor is intrigued with Owen. He was diagnosed at 2 months, which is very young for any child and this speaks to the severity of his case. We hope he has a few new ideas about what type of leukodystrophy Owen has. We hope he can give us a clearer picture about what Owen's future holds in terms of gaining skills socially, developmentally, and physically. We hope he can narrow down a life expectancy range for Owen. We hope he can provide us with ideas and resources to help us be the best parents to Owen as we can be. We hope he has some suggestions for medications for Owen that will remove the irritability, but not the personality Owen is revealing to us. These are our best case scenario goals for the meeting.
Realistically, we would like to have another set of eyes read all of Owen's MRIs, CT Scan, blood work and lumbar puncture results, and case notes. We hope that Dr. Eichler will be able confirm what we already believe; that Owen's current team of doctors are doing an amazing job treating our little boy. We need someone new to tell us all of the terrible information we learned on November 2nd over again so that we really know it is true.
Dr. T, Owen's current neurologist, is an amazing man. He is available to us on a daily basis to answer questions and provide us with information and help with Owen. One time, he called the house and I kept him on the phone for an hour asking him over and over the same questions about Owen ( I would just word it differently to see if I would get a different answer) and his overall prognosis. Dr. K is Owen's genetic/metabolic doctor and we are very happy with her too. On December 9th, the last time Owen had a serious round of testing, she gave me a sheet of paper with 21 different diseases and categories for me to take home. These were all of the things they were testing Owen for. It provided me with hours of googling material and really helped the obsessive side of my brain that wants to figure Owen out. Karen, Owen's palliative care doctor, is an angel. She is the most dedicated person I have ever met and is just one person, of many, who has helped us keep it together over the past few months.
Every day is a challenge with Owen. I hate the unknown, all the questions that do not have answers. Hopefully, this appointment will help to solve the mystery that is Owen O'Donnell Marshall.
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