A picture...

...is worth a thousand words!

As you can see, it has been a long day!
Hopefully, the picture will do the talking and I'll use less than a thousand words (not likely, though ; ) )

This is Miss P about three minutes after B put her in her car seat.  He was still loading the car and making lots of noise and she was out...We are all exhausted.  B carried everything, pushed the stroller, held her during blood work, was an amazing daddy & husband, etc.  I've already had seven seizures for the day.  P had blood drawn and has been in doc appointments since early this morning and she was diagnosed with Juvenile Arthritis.

This is considered an autoimmune condition and can have some genetic background to it.  They said it's rare for a parent or any family member to have any type of autoimmune arthritis.  However, it is very common to find many other autoimmune related conditions in the family.  We have a lot...My thyroid and seizures are both blamed on autoimmune conditions; B's cancer was an autoimmune type of cancer; we have other family members that have been diagnosed with alopecia, shingles, ulcerative colitis, etc.  They said the ulcerative colitis is the most likely genetic chain.  Though she should never experience any of those symptoms.

The blessing is that we were able to see the doc that our pedi & the specialist at Children's both wanted us to see.  Both of them prepped us that she is the best of the best!  She has even been named as such (i.e., top 10 docs in America).  It is a teaching hospital and so she was quick to educate as she spoke.  First words to her resident, nurse, etc., upon entering the room, "what do you see?  That's right blonde hair, blue eyes,  This is a predisposing factor for an autoimmune condition.  Isn't this what most of our patients look like?"  She later explained that blonde hair and blue eyes doesn't mean you will have a condition as such.  However, when these kids go to the Scottish Rite summer camp, somewhere upwards of 70+% are blonde hair, blue eyed kiddos!

The doctor then told us that most kiddos with this diagnosis go on to be the cutest and smartest kids in their class.  Obviously, as her parents, we loved that statement!

We had a sonogram done of her foot.  They were looking to see if any of the inflammation was caused by fluid around the tendons (this would make the diagnosis even more specific).  The first time they did it, they couldn't see anything.  So, they called in the head of radiology.  He was fun and a Hodgkin's survivor like B!!!  They didn't find any fluid and so they believe it is just a standard case of Juvenile Arthritis.

P was so tough, as in strong, all day.  We had to wake her up early to get to the appointment on time.  She ate breakfast in the car.  She got a late lunch due to all of the testing, but still worked very hard to finish her lunch.  While PT was in the room telling us what we need to be doing with her (lots of swimming, squatting, standing, playing with sand with her toes), she was finally able to finish her meal.  Then, Momma had her 3rd seizure while at the clinic.  After that, P wanted to come sit in my lap.  She had just managed to sit down and started to snuggle as I was writing down my seizure when all of a sudden...I don't know the polite way to write this....so, here goes....she projectile vomited her entire lunch all over just about everything in the room!  This has never happened before, so we were scrambling.

Right now, they have her on a very expensive NSAID that they want to keep her on for at least five more weeks.  Then we will go back and see how well it has worked and repeat blood tests.  In the meantime, we need to look for an absolutely wonderful pediatric ophthalmologist that is excellent/skilled at doing slit lamp studies.  She will have to have this study done every three months for quite a few more years.  One of the silent attacks of this diagnosis is that it effects their eyes (uveitis).  By the time we notice it, she would be close to blind.  So, this study apparently watches for it and catches it very early so that she can start getting treatment and avoid blindness.

Our prayer is that she is much better when we return at the end of next month because the next course of action or treatment would be methotrexate (chemo).  They said it is a very low dose.  Still, no one wants to know they are giving their little girl chemo.  The irony in this situation is that we are at the same point with my doctors.  They want to try a few more things and then they want to start me on chemo (Rituximab).

Here are a few pics of her toes so that you can see why we were concerned.

From a little too faraway, but you can still see the 4th & 2nd toe are larger than their buddies!

Much better view!!

They said the ANA test that came back last week as positive and very elevated is pretty non-specific.  Most kids are going to have theirs elevated as well, but your #s can be high and not have this condition.  We ended with her having bloodwork!!!  She was such a trooper.  They took 5-6 vials.  We were so proud of the great job that she did!!!  She cried a little bit once the needle was in her arm, but then she was smiling again and she gave the phlebotomist a big hug goodbye!!!

In the end, the doc said this is a very serious condition that needs to be monitored very closely.  However, on a scale of serious conditions she could be dealing with (1-10), it's a two.

We are so proud of our girl and ask that you would continue to pray for God to provide wisdom to the docs and burden their hearts over any changes that need to be made or directions we might need to take or not take.

Thank you all so much for your prayers.!!!

The Greatest Father EVER!!

Well, the greatest father ever is our Heavenly Father! 

Next in line would be P's Daddy, my husband, and gift from my Heavenly Father!  Wow!!!  B is the most amazing man!!  P is one blessed little lady to have such a wonderful Dad!  Growing up without an earthly Daddy means that I get to experience B's love for P in a completely different light.  I don't really have any expectations for him.  However, he has exceeded what any of them might have been if I tried to create expectations!!

I love the idea of celebrating B!!  He isn't that into gifts and celebration, but that doesn't mean we don't celebrate him!!  Last night at dinner, P leaned over to her Daddy and started giving him the most amazing hug!!  I've never seen her hug with such intensity!  It brought me to tears.  This precious little girl has an amazing God fearing Daddy that she can hug any time she wants...WOW!!!

This was the very end of the hug.  I couldn't get my camera out fast enough!  She sure loves her Daddy, though.  She kept pulling him back over to her to hug him one more time.  It was precious!!

One quick family shot as we were leaving. 
Praise the Lord for B, a man that fears the Lord, loves the Lord, and loves his family!
We love you so much!!!!

double

We heard from the pediatrician that P's ANA-looking for an autoimmune condition-is positive/elevated.  So, we are hoping to get in with the rheumatologist early this next week.  In the meantime, their recommendation is Naproxen (Aleve).  A. we can't find any that doesn't have all kinds of nasty ingredients (i.e., food colors and known carcinogens) B. we can't seem to find any made for kiddos.

We met with my doc at the beginning of the week to try to figure out why my seizures keep increasing.  She changed a bunch of things and they've continued to increase.  I had eight on Wednesday and 7 yesterday and 7 today.  The seizures that I had today all happened before noon.  So, it was rough.  Then, I took the rescue med which puts me to sleep and I woke up at 6p to my sweet hubby having brought home Freebird's for all of us.  Yummy!!

P's toes

Update on P:

• Since our appointment with Children's couldn't be until next week, our Pediatrician had us come in yesterday to do some lab work.  P made us all very proud!!  I guess she's watched her Mommy get enough needles in her arm and realized it wasn't a big deal.  We took all kinds of things to distract her and keep her entertained.  However, she never even winced!  They had to stick her twice to get all the blood they needed and she was such a trooper!!!!!  Yeah for P!!!! 
• Yesterday we picked up all of the films from each X-ray that she's had since this started.  We looked at the first one and couldn't find a fracture on any of the images.  So, we read the report and it said there is inflammation and so it's "possible" there is a fracture.  The next two scans showed no fractures.  Thus, the imaging center probably gave our doctor's office an incorrect report and there was not a fracture to begin with...
• We got a call first thing this morning that Children's had an available appointment this afternoon.  So, B cancelled all of his appointments and we headed off to Children's.
• After getting checked in, doing family history, etc., we were sent to another waiting room.  After sitting there for an hour and forty five minutes, we asked why the long wait?  They said it's first come first served, no matter what time your appointment is scheduled!!   Huh?  P had fun, though.  She was walking up to everyone and waving.  She tried to hold a little boy's hand...good thing her Daddy didn't see that one.
• Back to the waiting, we begged and pleaded and a precious lady at the front desk worked hard to get us back to see the doc sooner.
• The doc had a bracelet on that reminded me of the Connor's Prayer Warrior bracelets that we all wore for many years.  So, I asked him about it.  He said it's for his son who has Neuroblastoma (the same type of Cancer that Connor fought).  We asked if he knew about Team Connor (As many of you know, Connor's Dad is B's managing partner!) and it turns out that he is actually friends with the family.  His son's name is Alex.  Let's all stop right now and pray for Alex's healing and encouragement for his parents as they walk this tough road!!!!!
• Once he looked at P's toes, he agreed there is a problem and there never was a fracture.  
• While in the appointment, the pediatrician's office called with the lab work.  It was all fine for the most part except the few things that said, something in her body must be swollen (tests measuring for inflammation)!!  We are still waiting on a few other tests.
• The doc was amazing!  We were very impressed.  He was willing to say, "I don't know, but I will speak with a Rheumatologist tomorrow and my partners."  He also took some pictures of P's toes to share with each of his colleagues.  He agreed that this is a very odd presentation.
• When we were giving our family history, we realized what a strong family history we have for autoimmune conditions (my seizures & thyroid, B's cancer, B's dad, & B's brother to name a few).  So, the chances are much greater that there is an autoimmune component.
• Our pediatrician called tonight to follow up from the lab results.  B asked her how worried/concerned we needed to be or could we rest easy knowing all would be okay.  She is always incredibly calming.  However, tonight she calmly told us that we do need to be concerned.  So, we're praying that we can get in to see this rheumatologist quickly and that they can find answers for Miss P quickly! 

Thank you all for being such amazing prayer warriors for our family (and for Alex)!!

A quick smile for the road!

Somewhat of an Update

A quick update on our girl:

Almost three months ago, we noticed that she had a toe that was swollen.  So, we took her to the doc's office and they did an x-ray to tell us her 4th toe is broken.  Four weeks later, just as swollen.  The great thing is that she didn't seem to be showing any signs of pain. So, the ortho says he can x-ray it.  Everything looks great and healed (under the skin).  On the outside she is just as red & swollen as can be...so, he tells us that we need to go sit in the waiting room at Children's ER all night.  We took her back to our pediatrician that took another look and said stick with getting an appt. because if you go to the ER they will do an x-ray and tell you to come back next week.  However, we are noticing other toes on that same foot starting to swell.  So, we called back today to see if we could get her appt moved up...

As of right now, it's not an option, but they are waiting for cancellations!
*************************************************

Next, I'll start by apologizing for this not making any sense.  I've had to take some medicine this morning that pretty much takes me out of the game.  However, I'm trying to keep fighting through.

First part of the update relates to Mayo.  We spoke with the docs in charge of my case and they are all a bit up in the air.  The neurologist says that the surgical conference determined that I needed immunotherapy because surgery is too risky.  The neuroimmunologist said that we've tried most everything, but there is one more choice.  My doc at home thinks that there is one more surgical option.  So, here's the scoop:

• There is inflammation in my amygdala which leads them to believe that it is an autoimmune encephalitis causing this...this is the first time this has ever been mentioned, but they say they found it in 2010 & 2012.
• The surgery they would want to do would be in the temporal lobe, but they are afraid that I would lose too much cognitive function.
• On the other hand, the docs agree that my seizures do not present as temporal lobe seizures, but more like insular seizures.  Thus, they could be starting in the insula and progressing to the temporal lobe.  So, if we remove part of my temporal lobe, it won't do any good if the problem is in the insula.
• The neuroimmunoligist is recommending chemotherapy called Rituximab.  Thus, completely kill the immune system (all the B cells?) and see how it wants to "restart."  He says that it's highly likely that it won't work, but he doesn't feel that there is another choice that has any greater projected outcome.
• We spoke with my neurologist here and she sees that there are a few more avenues.  She agrees with the chemo, but wants to consider trying a few more meds.  She wants to take me off the med I've been on since day one and switch it to an old school drug.  However, we have to find out if we can get our hands on it since it is so old school and swimming in all of the artificial colors that are triggers for my seizures.  
• Doc is trying to reach out to some colleagues at Jefferson to see if they would consider my case for the surgery.  She said she would even travel with us and go see all her old buddies!!
• We are trying to get our hands on the videos from the original brain surgery.  They were supposed to be at the Mayo surgical conference, but it doesn't appear that they made it.  These could also be sent to Jefferson to see how willing they are to consider surgery. 

After having 40+ seizures in the past week (one of the worst weeks I've had since being diagnosed), the Lord blessed me with some reprieve and I didn't have any seizures on Sunday and I just had one going to bed on Monday and Tuesday.  However, today I had already had 6 seizures by 11am.  Thus, I've had to take rescue meds.which typically remove me from the world.  They are so tough...

So, hopefully, we'll be back soon, but it's harder to see what I'm writing and to know if I'm really awake..

God is Good...

ALL THE TIME!!!

All the time...GOD IS GOOD!!

We haven't heard back from the Mayo Clinic yet.  However, I signed in to my patient account this morning to find a dictation from yesterday's meeting.  The gist of it all is that even though they have new technology that didn't exist during the first brain surgery, they still feel as if there is too much proof that my seizures are bilateral (originating on both sides of my brain).  They said this keeps me from being a surgical candidate.

Their recommendation was immunotherapy and to speak with my immunologist.  However, while at Mayo in February my immunologist placed me on what he referred to as the "nuclear bomb" of immunotherapy.  If it worked, it told them that something would work and they would find the correct type of treatment.  If it didn't wipe it all out, nothing else would...A few days after we returned I had so many seizures and what appeared to be an allergic reaction (that we now think is a new type of seizure that I'm having).  Thus, my immunologist said surgery was my only option.  This is why it was sent to surgical conference. So, there must have been a bit of a lack of communication somewhere. 

This leaves us feeling like our hands are truly tied, though.  What do we do if both docs say there is not an option?  In the last week, I've already had 37 seizures.  This is a huge increase.  It's as if the seizures are becoming more frequent and more intense.  B and I discussed a million different options today.  We just don't understand.  What do we do?  Do we trust that the Lord has a plan in this that we just can't see and how do we live that out on a daily basis?  Are we still supposed to try new treatments?  Do we stop searching and just go back to the lowest dose of meds (that gave me the same control that I have now on a super high dose of meds) and try to learn how to live life with seizures?  Do we go down some other crazy path for a treatment? 

Then, I looked at my cell phone a few minutes ago.  I get a message each day with a Bible Verse for the Day.  When I opened it, my jaw dropped.  This is B's grandparent's verse, B's parents' verse, and they had it framed for us for our wedding and it hangs above our mantle for every person to see that walks in our door:

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge Him,
and he will make straight your paths.
Proverbs 3:5-6

So, we trust in HIM. 
Even though we don't understand.
We give HIM glory because HE is the only true God and the only true Healer!
We are reaching out to hold HIS hand and follow HIS path for my health and healing!

Thank you all for praying!