[TMIC] Fw: Hello

[Mary Eden Cochran]

I am forwarding this email to the list so you can have an update on Grace Chang.  CJ asked me to let you all know how she is doing. Apparently he has been bumped off of tmic-list and he has been trying to resubscribe without success...but I told him how to address the email and he will try again today or tomorrow.   Mary Eden   ----- Original Message ----- From: Grace Chang To: Mary Eden Cochran Sent: Sunday, March 05, 2006 5:25 PM Subject: Re: Hello Hi Mary Eden,   Sorry, I missed your last e-mail. I had a hardware problem with my home computer in the past few months. It is fixed now. In addition, my workplace has blocked us from accessing any outside e-mails from the office computers. Therefore, I have not checked this e-mail address for a while. By the way, I noticed that I have not received any e-mail messages from the mail list of TMIC in the past 1-2 weeks. I wonder if you experience a similar problem.   Currently, Grace is in a local rehab medical center for SP & OP. Overall, she is doing OK. As you might recall, she had an episode back last August that led to her respiratory failure. From August to October, she was in the ICU of a local hospital. After a treatment regime of Rituximab, PLEX and IVIG, her condition finally became stable. Immediately after that, I transferred her to a respiratory rehab hospital in Birmingham for weaning from the ventilator. Finally, she was completely off the ventilator in mid December. Right now, she still wears a trachea but the tube is capped. The trache care is part of her daily med care program. In addition, she is still feeding tube dependent. The good news is she passed a swallow test a few weeks ago and has started taking solid foods through her mouth. The occasional attacks from UTI & pneumonia remain as an health issue for her. Right now,  Grace is taking a daily dose of 15 mg prednisone. Once a month we send her to a local hospital for an infusion of IVIG. Finally, she takes an infusion of Rituximab for depleting her B-cell every 3 months. All of these are merely for maintenance treatment. Her dr told me that the only chance for her to recover from the paralysis and cognition loss is the stem cell therapy. Unfortunately, this may take 10-20 years from now to become a reality. Meanwhile, Devic's disease acts like a ticking time bomb in Grace's body. It is so unpredictable and aggressive that I am not sure Grace can survive from the next attack.   Kevin is doing fine at school but still acts like a typical teenager with occasional mood swing. He is in Junior year now and is about ready to apply for college. His interest is in Business, especially Economics. His top school choices are Michigan and Vanderbilt for now. I told him that he needs to get a scholarship otherwise he may have to attend an in-state college, such as Auburn. My work has been reassigned due to the recent company downsizing. Other than that, our daily life has its ups and downs. I am still trying to cover all the bases everyday. It has not been easy but I do the best I can.     How is your health? Are you able to move around with a walker now? Please keep me posted.   Take care,   CJ    Mary Eden Cochran <[EMAIL PROTECTED]> wrote: Hello, CJ, I wrote to you a long time ago and you never answered, so I decided to try again. My email was asking you how Grace was doing and also how are you and your son? It has been a long time since we (tmic-list) have heard from you. I am hoping that all is well and getting better.   Mary Eden     Yahoo! Mail Use Photomail to share photos without annoying attachments. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.375 / Virus Database: 268.1.2/274 - Release Date: 3/3/2006