Wednesday, April 15, 2015

Pray for Jessie Claire! Do What You Do So Well For Jessie Claire!

Oh, Dear Ones, I've been raising Cain.. cane...?  I've been making noise over the Duke Blue Devils, over my inability to stand up from this wicked hospital bed, to get to the persnickety bathroom, over our failure to make it on time to the doctors' blessed appointments, over our equal failures to get the felines to obey the feline rules of the feline household! Did I hear that they're pulling Blue Blue Bell Ice Cream?

Well, forget all our usual silly stuff.  This one night, let's even lay gently aside Grader Boob the Lumpy One, though we'll take turns, okay?  Code words: "Beloved Grump." Night?  Oh, however long,  All right, I CAN do that pray unceasingly thang, and cover Beloved Grump, always.  Just gimme a doggone minute.

There is a young girl who needs our prayers, our good thoughts, our best intentions, our most wonderful of wonderfuls, and if you carry such things with you as a matter of course, then give her your matter of course.If you know karma is what is, if you have been so blessed as to know what is, then go to it, my peaceful friend!

You're familiar, if you're familiar with this blog, with parental blogs guesting here who detail the serious health problems of their children in that marvelous format created for them, mostly to share news with family and friends, CaringBridge, you know it has spread as an interwebs' phenomenon, not always, in my opinion, in a healthy way, but mostly, for sure!  And behind the scenes, no doubt, CaringBridge is on the the ball.

Allow me to introduce Jessie Claire's mom's Robin. First a bee-yoo-tee-fuu-ool picture of Miss Jessie Claire, from the outside, showing an attitude that beats all: the love of another creature, freely given, gently offered.

And timely, too! Happy Easter (a little late)!
And here are some excerpts from Jessie's mom Robin who keeps an honest but upbeat, faithful to God, faithful to herself, faithful to her daughter -- faithful to so much I am often in awe.  If you take the time to read her journaling, through the years, you don't see much change in the faithfulness -- hence, the awe. But if you know the bravery in her honesty, in her writing the doctors' opinions, the many tests results.  I applaud her juxtapositions, done, I'm sure, with the help of many prayers, foot stomps -- whatever goes for a good Bianca Castafiore's aria in her home!*  (please see below, the very below)

By Robin Henson Jul 2, 2014 11:02am

MRA of Jessie Claire's brain showing Moyamoya Disease impacting  middle cerebral arteries. [Lisa's Edit: The x-ray is unedited, unchanged, as is it's interpretation. There is no way.]  Blood flow is white from contrast.  From the center and "branching" right is healthy blood flow.   From the center and "branching" left there is no blood flow. The cerebral artery is closed.
MRA of Jessie Claire's brain showing Moyamoya Disease impacting middle cerebral arteries. Blood flow is white from contrast. From the center and "branching" right is healthy blood flow. From the center and "branching" left there is no blood flow. The cerebral artery is closed.

Prayers Please
By Robin Henson — 23 hours ago

Before providing Jessie Claire's medical update, Jessie Claire wanted me to share this:    Last week Jessie Claire went to visit her Daddy at work.  She put on his "Deputy Director" badge and went into Senate Chambers at the State Capitol. Seeing the Senators vote on bills was educational, but that wasn't what made the day so special for her.  Jessie Claire was treated like a princess.  The Lt. Governor and several Senator's asked Jessie Claire if they could have their picture made with her, gave her gifts, and a quick tour of the chamber.  I was touched by all the people who said they have been praying for her.  Jessie Claire was quick to thank a few of these gentlemen for supporting childhood cancer and she bragged that she is a Rally Kid (Rally for Childhood Cancer).  

Recently, Jessie Claire has had lots of Easter fun starting with a Spring Fling at her old school, Brighton.  However, she has not felt great in days.  Every time we have been out of the house for 2 two 3 hours, Jessie Claire gets in the car, tells me to get her home because she is tired and does not feel good.  Friday morning, Jessie Claire's left leg was numb (classic TIA (mini stroke) symptom).  Something I forgot to mention last week is that I recently learned that Jessie Claire has been having TIA's (mini strokes) for quite some time.

Tomorrow morning, Jessie Claire is having an MRI for Brain Tumors.  The Boston doctor has added additional testing to check blood flow.  This test will help determine how quickly she needs the next brain surgery which will be done at Boston Children's Hospital.

Some people told me that thought the second surgery I mentioned last week was on the left side of the brain.  Although the left side has arteries narrowing, the urgency is with the right side of the brain.  For those who are new, Jessie Claire's right middle cerebral artery is completely closed.  In March of last year, Jessie Claire had brain surgery to try and create a new source of blood flow to the right side of the brain.  We were told the surgery was needed or she would have a stroke.  Now, a year later, we just learned that the surgery did not work.

So, please continue to pray that God continues to protect Jessie Claire and she does not have a stroke. Please pray for wisdom with the doctors.  Please pray that the the brain tumors are stable.  And please pray that next steps are determined and administered quickly.

Thanks for all of your prayers.  Please share Caringbridge with anyone you know who prays. (Confession from Editor Lisa: This was when I felt compelled to write this funky post.)

[Me again, moi, who swore to minimal interruptions to Robin's perfected texts. Here is a journal entry I missed in what seems between day before yesterday and today, and as Southerners tend to, well, shout out: "Well, butter my buns and call me a biscuit!"]

Preliminary Glance
By Robin Henson — Mar 20, 2015 6:15pm

First, Jessie Claire wants to say "I have a soar-soar throat (from breathing tube) but I'm feeling better and spending the afternoon with my Nana".  I am going to take a minute to brag.  Yesterday was a very long day with some delays, but as always, Jessie Claire handled it beautifully with lots of praises from the nurses.

Yesterday we were told something that we are still trying to process...   but first we are praising God that the "preliminary glance looks good" and there is more blood flow than last year.  I asked lots of questions including "Is there enough blood flow to prevent a stroke? Any additional narrowing of arteries?  Are there any signs that Jessie Claire has had TIA's (mini-strokes)?"  Understandably, he has to "comb through the pictures" before he can answer these questions.  This is all we know for now.

Yesterday one of the doctors told me that he does not think Jessie Claire has Moyamoya.  He gave a good argument on how he came to this conclusion.  He believes Jessie Claire has neuro vasculopothy.  I read a couple of abstracts from medical journals to try and learn what this even means but decided that was a bad idea.

Yesterday was the first time I have ever heard the term "neuro vasculopathy".  However, less than 24 hours earlier, I made arrangements for a pediatric neuro-vascular surgeon and two other doctor's on his team, to review all of Jessie Claire's scans.  This doctor is the Director of the world largest and best Pediatric Neurovascular and Moyamoya Clininc.  They are located at Boston's Children's Hospital.    
This has been a year full of fear, devestation, prayer, praises, miracles, and JOY!  As always when we are confused,scared and nothing makes sense, God has gone before us to direct the path best needed for Jessie Claire-- His Path!

*"Ah! Je ris de me voir si belle en ce miroir!" -- Gounod, Faust

© 2015 L. Ryan

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