Hello, Old Friend

Last evening, I had my first (well, third, but we'll get to that) infusion of the drug Remicade. The wonderful Mayo docs feel that this may be a key step in finally getting whatever disease process this is fully under control. Wikipedia says:

Remicade works by blocking tumour necrosis factor alpha (TNFα). TNFα is a chemical messenger (cytokine) and a key part of the autoimmune reaction. Remicade blocks the action of TNFα by preventing it from binding to its receptor in the cell. Remicade is an artificial antibody.

This drug, and ones similar to it, are used to keep a range of autoimmune type diseases under control. I first had infusions of Remicade 2 years ago at the Hospital of the University of Pennsylvania; however, at that time, I was just way too far gone for any medical remission. Because of my prior trial of Remicade, my current one has a measure of uncertainty: people who use Remicade and then stop usage are often unable to return to the drug because the body may build up antibodies to the drug itself, causing allergic reaction. So, basically, we had infusion fun last night with lots of benedryl, eppe pin, tylenol, and prednisone sitting nearby (and one very nervous on-call resident hovering around way more than usual), but so far no drama.

There is a possibility of a delayed reaction in the next couple days, but no accute reaction is a good sign :) So, with Remicade looking good, me eatin' real food (so funny what you get congratulated for in a hospital - "Wow, you ate that whole bagel. And you took 5 walks down the hall today!" I mean, it's comical really), I am looking at a Sunday or Monday release back into civilization. Thanks as always for your support - Mary

The New Big Thing

Hi friends, I will be having a big surgery today at the Mayo clinic.  We have faith that this will mark the end of spontaneous infections; in addition to the surgery, I will be starting on medications that are often successful in controlling Crohn's disease.  Why another surgery? (Why another infection?) -- nobody really knows.  Maybe the whole problem was not taken care of last fall, maybe I should have started these medications earlier, maybe I didn't wait long enough between my surgeries in October and December to heal completely.  "Maybe" or "Possibly" are words you learn to live with.  Despite all the uncertainty as to causes and whys, I feel (more honestly than I have in a long time) that today is a positive step toward SUSTAINED health.  I can anticipate one more surgery in 6-12 months, but expect good health in the interim and beyond.  Thanks to all who bother to read and wish me well.  The support of friends has been wonderful and integral to getting through this experience.  I think I tend to sound a bit morbid -- and hey, I'm no little miss sunshine -- BUT, I am really excited about the possibility of riding bikes, hiking, taking photographs, and even just working in the near future WITHOUT PAIN and without the nagging feeling that it's about to all fall apart.  Life is hard and rarely gives you all you want, but if I can find a way to do the things I love, and to be with the people I love, in a stable and sustained way, I should be incredibly grateful. With Love - Mary

June Surgery At Mayo

Mary was discharged from Mayo Saturday 5/23 following her week of medical tests. Her surgery has been delayed until June 4th or 5th. She will hang out in Baton Rouge in between hospital stays and spend time with her family. She will fly back to Rochester, MN for her surgery next week at the Mayo. Not sure the address yet - will keep the blog updated when she has an address/room number for the next surgery.

-LM

Take Steps! CCFA Charity Walk!

Mary and I will be doing a charity walk for the Crohn’s & Colitis Foundation this summer in Seattle. The walk will be at Magnuson Park on July 18, 2009 at 4:00 pm.

We would love if you joined our team (Sounders IBD) or showed your support by making a donation. I know money is tight but this is a truly amazing organization.

Take Steps Page:
http://online.ccfa.org/site/TR/Walk/Chapter-Northwest?pg=entry&fr_id=1266

Donate or Join our Team (Sounders IBD): http://online.ccfa.org/site/TR/Walk/Chapter-Northwest/876963180?pg=team&fr_id=1266&team_id=32971

More Mayo Please

After three admits to the ER in Seattle Mary has decided to voyage back to the Mayo Clinic in Rochester, Minnesota. She will be traveling there on Thursday May 14 with her Dad to seek the opinion of their expert staff. She is home in Seattle now resting before her trip on Thursday. Mary was discharged from the ER in Seattle this afternoon and is in good spirits. Her Dad will be flying up to Seattle tomorrow night so they can make the trip to Minnesota together. Please keep her in your thoughts and prayers this week.

Thanks,

-Logan

Seattle Surgery / Seattle Photos

Mary had a few minor surgeries in Seattle this month. She had some unexpected abscesses in her lower abdomen that needed to be drained. We are currently at Northwest Hospital where she has been treated very well by the staff here. The Surgery was relatively minor and we hope to see progress over the next few days.

Up until last week Mary has been feeling better and better each day. Her energy level has been good and we have been getting out and doing a lot of things around Seattle like going for short hikes and walks around Greenlake, bike rides, going to the Seattle Sounders FC games, volunteering, riding the motorcycle, critical mass, kite flying, exploring the peninsula, planting flowers and much more.


You can check out some of our photos at our flickr sites:
Mary’s: http://www.flickr.com/photos/kiteflier/
http://picasaweb.google.com/marygaston/LetSGoFlyAKite

Logan’s: http://www.flickr.com/photos/linconllogg/


Thanks for all the calls, cards, emails and thoughts of encouragement.


-LM

CCFA Night at Safeco Field: Angels vs. Mariners, May 19, 2009

http://seattle.mariners.mlb.com/sea/ticketing/special_group.jsp?group=CCFA

CCFA Night at Safeco Field Angels vs. Mariners Tuesday, May 19, 2009 - 7:10 p.m.Featuring Mike McCready of Pearl Jamplaying the National Anthem Enjoy some Major League Baseball while supporting a great cause! Catch the Mariners at a discounted price, exclusive to you through this online offer. A portion of the proceeds from tickets purchased through this special offer will benefit the Northwest Chapter of the Crohn's & Colitis Foundation of America. DEADLINE TO PURCHASE: Monday, May 18 at 9:00 a.m. Game Date:• Tuesday, May 19 vs. Los Angeles Angels - 7:10 pm Pricing:• $15 View Reserved (normally $20)• $32 Field Level Seating (normally $40)• $7 from each ticket sold benefits the CCFA!
***Special Note for Take Steps Participants*** In order to credit individual or team fundraisers you must send an email with the subject: MARINERS NIGHT to Jennifer Simmons at jsimmons@ccfa.org with the following information:1. Ticket purchaser name2. Number of tickets purchased 3. Take Steps Team or Participant name you want credited

Final Surgery a Success!

I just got back from Rochester tonight after a Christmas visit with Mary and her dad at the Mayo Clinic. As I mentioned in previous posts the surgery was a success. She was discharged on Friday and will be returning to BTR soon. The three of us had a very nice Christmas in her room not letting the gloom of a hospital break the Christmas spirit. We entertained ourselves with puzzles, movies, napping, trivial pursuit, hospital food, and avoiding the cold. Thanks again for all the support everyone.

-Logan

Christmas Surgery @ Mayo

Just wanted to remind everyone that Mary's final surgery is coming up in a few days. She will be flying up to Minnesota on Monday (high of 4 degrees Fahrenheit!) and will be in the hospital over Christmas. The operation will be on Tuesday the 23rd. If you would like to send cards or flowers or anything else the Mayo address is:

The Mayo Clinic
200 1st St SW, Rochester, MN‎

Her dad will be with her the whole time and I will be flying up on Wednesday and spending Christmas with her and her dad. Mary is understandably anxious about the surgery but looking forward to getting back to a normal life.

Thanks everyone for all the support of this site, I know it means a lot to Mary.

Merry Christmas and Happy New Year to you all,


-Logan

Feeling Better - Last Surgery

Mary is feeling her best in nearly a year following her last surgery at the Mayo clinic. She is very comforted by the fact that she is off antibiotics and regaining more strength and energy every day. She and I spend a great Thanksgiving week together starting off in Baton Rouge then to Natchitoches for a one of our friend's wedding. We then drove over to Dallas and spent Thanksgiving with my family at my sisters house. It was great to see my family (especially Farrah my two year old niece) and it was wonderful to have some of the old Mary back in full sprites. She was enthusiastic, smiling, and full of life, it was really great to see her in true form.

I want to thank all of you who have donated to this site. It means the world to me that you all care so much. Mary was very touched by the gesture and we will be thinking of a way to thank you all soon.

Mary has one last surgery to go at the Mayo Clinic. The surgery is not the best timing but she wanted to get it over with as soon as possible so she could begin life again. The surgery is December 23 at the Mayo Clinic which means she will be in the hospital for Christmas. Her Dad and I will be there with her but it will still be a bummer to be in the hospital over Christmas.

Have a happy holiday and keep Mary in your thoughts this Christmas,

-LM

more pics here Thanksgiving-2008

For IEMers (and kickballers, and cheesesteak-eaters)

Hopefully, by now, some of you have had the opportunity to work with or meet Ms. Mary Gaston. Some of you might have the pleasure of calling her a friend.

For those who don't know, Mary joined IEM as part of the original FEMA Katrina Planning Team, and shortly thereafter found her home in the IEM Marketing department.

Having quite a gift for the arts, she left us to head to Philadelphia to work on a photography fellowship, work part-time at the Philadelphia Weekly paper, and then became Marketing Director of First Person Arts, an organization in Philadelphia that funds and produces documentary films.

In early 2007, she was diagnosed with ulcerative colitis, and returned to Baton Rouge to seek medical treatment, while resuming her position at IEM. Shortly thereafter began a series of surgeries, in Baton Rouge, New Orleans, and Philadelphia. She's currently recovering from her latest treatment at the Mayo Clinic, in Rochester, Minnesota. At this point, she's been through five surgeries in one year, and she's got a sixth one coming within the next 3-6 months.

In that time, the costs of her medical treatment have spiraled into the tens of thousands of dollars. So, to help, her friend Logan Monroe has started a collection to help her and her family cover her expenses.

If you worked with Mary, consider her a friend, or just knew her to be a wonderful person, or if you didn't ever meet her, and have just a little bit of good in your heart, please consider sending a gift to the account we've got set up for Mary. A portion of those funds will be dedicated to Colitis and Crohn's research.

Updates on Mary

This thread is for updates on her post-op and recovery.

Mayo Clinic Surgery

For those of you that do not know, Mary is at the Mayo Clinic in Minnesota this week. They are operating on an internal infection on Tuesday and are hopeful that this will be here last time under the knife. Her mom is up there with her for this week and her dad and brother were there last week. Please keep her and her family in your thoughts this week as she recovers from this surgery.

Thanks For Visiting

I have set up this blog to help raise money to offset the medical expenses confronting Mary and her family. Please feel free to donate as much as you are comfortable with by clicking on the paypal link on the right. You may donate anonymously if you chose. I would like to note that a portion of the money raised here will go to the Crohn’s & Colitis Foundation of America (http://www.ccfa.org/). You may also use this forum to post words of encouragement for Mary during her recovery.

Thanks for your support,


-Logan