Angels Unite

Angels Unite
Angels Unite

Thursday, August 28, 2014

Say Something...

"Say something, I'm giving up on you.  And I am sorry I couldn't get to you."  I am not sure what to say... it has been so long.  Are you still there?  Not sure where my inspiration or energy went. Did I lose my mojo?  Have the good times returned?  Has the despair been lifted?

Not sure I can give any answers, so often I have thought about picking up the blog and write about the G girls: the amazing Disney World trip for Miabelle's 2nd year of survival, Miabelle's Disney Cruise for her 3rd year, the HLH 700 miles to hope ride of the Akin Foundation, etc... , the many moments of joy in between and a few moments of fear. So many moments to mention, too many to capture.  So I will try to catch up and give some news when possible.

We are back in Cincinnati for Miabelle's 3rd annual checkup.  Just because destiny loves to shove it in your face, the view of our hotel room is our old apartment, aka the isolation room.  So many memories of which we try to hold on to the good and forget the bad.  We cannot complain, our road has been easy compared to many HLH families.  Miabelle has survived 3 years with so far not a bump in the road.  But like every year and for 5 years we return to Cincinnati Children's to make certain she remains on course: is her development on track, is she growing well, are there any scars from HLH on her central nervous system ... more importantly is the engraftment (new cells versus old) intact.

Well, today we went back.  We received such a warm welcome from the staff. The nurses and the support staff still remembered her: the little sweetie with the cutest laugh.  Although coming back is always with mixed feelings, this certainly made it so much easier and pleasant.  Our favorite doctor, Dr. F., checked out Miabelle and all seemed ok.  They drew some blood of which we will have the results next week.  Obviously our little princess did not like the poking with the needle and her sister who came along thought that the experience was (I quote) "traumatic papa...this is traumatic papa" (not sure where this 4 year old learned this word).  But like a true soldier Miabelle stiffed up her upper lip. All went well.

After a few hour in the hospital, we raced out to have dinner with Cincy Angels Rick and Libby, our Cincy family.  It was priceless to catch up.  The girls could have behaved a little better at the table but given the distance traveled, the wait in the hospital and the "traumatic" poking I must give my little princesses some relief from papa's dictatorial table manners: sit straight, be quiet, eat your food... not with your hands we are no barbarians... use a fork! and if they dare to utter a word they are grounded for 6 months on bread and water... just like in jail.  This is when wify jumps in and says "yeah right, they got him wrapped around his finger"... I deny such ridiculous insinuations.  Indeed dictatorial!

It was fun to see Rick and Libby, friends despite our continuation of cocooning regardeless of our new found freedom in NY.  There are no words that can ever describe our gratitude towards all the Cincy Angels such as Rick and Libby.  Thank you!!!

Just look at Miabelle's face, so content to be held by Libby

Tomorrow Miabelle is going back to Reumathology at Cincinnati Children's.  For awhile she has been complaining of knee pain.  In addition, her walking, jumping and running remains a little stiff.  Steroids can regretfully have a long term impact on muscles and joints; so why not nip it in the butt and have them check it out.  Then on Friday another appointment with Orthopedic and then hopefully in a week all the results.

This is what we hope for: knees are growth related and you are now at 100% donor cells.  This is what we want to avoid: knees are indeed an issue and donor cells have dropped since last year.  Now we will have to wait.

Sleepy sleep,


  1. HAPPY, HAPPY, HAPPY........
    DON & cOOKIE


  2. say something again! its christmas time!

  3. Please, send the world a update :)

  4. I'm a young surgeon now and was going through some old medical school memories from when I was at Columbia. I'm sure you don't remember the young awkward medical student who never knew what to say to you each day as he was trying to learn what HLH was before checking up on Miabelle each morning and afternoon. But I often think back on those interactions during times when I am at a loss for words with my own patients now. When patients and families need to be told "Don't give up hope," Miabelle and the hospital room at CHONY is one of the images that comes to mind. I'm sure you'll never know the impact you've had on me for good. Thanks for inspiring me to be a better doctor.

    Imagine my surprise when I found this blog recently. Some of the entries brought me to tears as I think about my own daughter now and what that experience must have been like. I'm happy that things have turned out as well as they have and wish your family and Miabelle the very best.

    Scott Stevenson