A New Year for Megan….

Happy 2010 to all.  Our family is thankful for the blessing of a new year.  Year end 2009 brought some difficulties for Megan and we have been trying to help her struggle through each challenge.  

Please forgive me for not writing with updates about Megan since before Hannukah.  It has just been very difficult to find the words to blog.  We have been trying to re-steady our footing and we continue to usher Meg along through her battle.

Meg has been overwhelmed with pain and discomfort.  She has been dealing with brain swelling for many months but, on top of that, her wisdom teeth are wreaking havoc.  How much should a 16-year old have to endure? 

In November, the doctors overseeing the clinical trial advised that Meg could not have her wisdom teeth removed until she completed her first month of meds.  Later, they advised that Meg would also have to complete her 2nd month of meds, before we could tackle the wisdom teeth issue.  They explained that, Meg would need to temporarily stop taking the clinical drug prior to the oral surgery, because it could hinder her surgical healing process.  If she stopped the drug during the dose tolerance phase (the first 2 months), she would be dropped from the trial and would no longer have access to this potentially life altering drug.  It seems that science prevailed over Meg’s well-being. 

No matter how hard we tried to convey Meg’s misery, the doctors couldn’t alter the trial requirements.  As a result, Meg has really been suffering.  If any of you have ever had wisdom tooth issues…you know how much pain they can cause.  Most children endure that pain for a number of days, before having surgery and resolution.  Meg has endured this pain for several months.  No words can express how heart-wrenching it has been sitting at her bedside, everyday, trying to help her handle the enormous amount of pain.  She is so worn out.

Meg hasn’t been out of bed much since before Thanksgiving.  She can walk, but just standing hurts her head and neck.  We have only been able to get her out of bed and the house for her weekly doctors’ appointments at Children’s National.

During Meg’s weekly exams, the doctors have indicated that Meg’s neurological status has been consistent, with no reduction in capabilities, which is great news.  She continues to master the doctors’ tests, like ”follow my finger”  and “close your eyes and extend your arms and hands out in front of you and hold them there”.

The doctors performed a CT scan of Meg’s brain and said that it appears that the edema has been reduced, since she began the clinical trial drug.  This is a good sign.  From what we understand, there has been a lot of success with the drug that Meg is receiving.  We are hopeful that Meg will continue to improve while on this medication.  We’ll know more this week….

This Thursday, Meg has a brain MRI.  They will look to make sure that Meg’s disease has not progressed while she’s been on the clinical trial drug.  If all is well, then she will continue taking the oral clinical trial drug – with a brief break for oral surgery.  We have been given the go-ahead to schedule Meg’s oral surgery for next week.  We are anxious for her to have the surgery. 

Please, please, please pray to G-d for good MRI results for Meg….and a speedy and uneventful recovery from oral surgery.

In the meantime, in order to help Meg with pain, the doctors have been trying to adjust her medications.  It has been very challenging to find anything to really control the pain.  The clinical trial restricts the use of certain medications, because when combined with the clinical trial drug, they can impact Meg’s heart rhythm.  Meg had negative to reactions to some of the medications – like vomiting and nausea.    Meg takes an extended release morphine pill at night, to provide her relief  throughout the night, so she can get some sleep.  During the day, we give her fast-acting liquid morphine, if necessary.  She is so tired of taking medicine and dealing with side effects.  I wish that I could take all of her pain, worries and struggles away….

Although things have been rough…there have been some things happening that have kept our family focused in a positive direction.  

I hope that everyone caught a glimpse of Meg’s Story in the Jewish Times.  It was a recounting of the story that we told Mr. Jacobs, as we sat together by our fireplace on the Sunday night before Hannukah.  It was difficult for us to re-live the details of Meg’s journey.  We hope that those who read the article were able to gain some personal insight and learn that Hannukah is not about the gifts …but the love.  We are very appreciative that Phil Jacobs shared our story.

Meg’s Make-A-Wish room is just about done.  Jerry finished painting, putting down new flooring and building closet shelves over the Xmas and New Year’s holidays.  The walls are a beautiful light creme yellow color.  The floors are a laminate that looks like stained wood and it has a rustic feel to it.  The brown and yellow compliment each other and when the sun shines in, the room feels warm and cozy.  Jerry and Uncle GG set up the corner desk, IMAC & printer that Make-A-Wish presented to Meg.  We’ve got to make some decorating decisions for curtains, an area rug and some furniture changes, but the room is officially Meg’s graphics/photography room now.  Make-A-Wish also granted her a new Nikon camera to take pix.  We are anxious to get Meg out of bed…to use her new camera and her IMAC and print up some of her amazing photography.

Thank you to everyone who has shared their time, heart & soul with our family.  We are ever grateful.

Joanne, aka (Megan’s Mom)