Quick prayer request

Just a quick prayer request:

Today, May 31st, M's case is supposed to go to conference at the Mayo Clinic.  As we understand right now this is mostly a surgical conference where a team of Neurologists and Neurosurgeons will be evaluating M's case and determining whether or not her case is treatable/curable via surgery.  This option had originally been off the table after our first surgery in November of 2008 since her seizures occur on both sides of her brain.  However, Mayo has determined that although they do occur on both sides, medication seems to control her right side but not the left side.  Through their thought process they are hypothesizing and trying to best determine if surgery can be performed on the left side of the brain for the seizures that occur there.  That said, it could be promising....yet.... M's dominant half of her brain is in fact the left side.  So there is great concern both on our part and Mayo's as to the benefit versus the risk associated with such a procedure.  There is concern that if they go in surgically they can potentially seriously damage M and even cause her to lose certain functions. 

So please join us as we pray that Mayo would be able to come up with a solution, that we would have wisdom, and no matter the decisions made today, we would have an overwhelming sense of peace from the Lord that would guide us. 

Since the start of this year, M's seizures have really gotten out of control.  Just in the last three days she has already had 20 plus seizures and her standard medication and rescue medication do not seem to be working. 

In case you are interested, here is a link for a possible surgical procedure that Mayo is currently conducting and there is a great chance that M would have this procedure before anything else.

Thank you again, and we'll be sure to update with Mayo's finding as soon as we know something.   

Nate Update

From Nate's Mommy:

8:47pm May 24

We came home on Tuesday, just 7 days after Nate's surgery. The surgeon cleared him to come home and the chemo he is going to be taking over the next 7 weeks is oral, so we are able to be home and have doctor visits in Ft. Worth over the next few weeks. Nate is feeling great and has actually gone to school the last two days. I have no words to describe the joy and emotion I feel as I watch him fight back again. He will be able to attend the last day of Kindergarten next week and celebrate this special day with his classmates. We cherish every milestone that Nate is allowed to reach, because we know nothing is guarenteed for any of us. He participated in field day today with lots of fun games. We are looking forward to being home together for summer break and will return to California in July to meet with his doctors and have scans. Thank you for loving Nate and praying for him with us!!!!

One Small Step for Miss P and Failure is Not An Option

Sunday was a special day for our girl!  No, she didn't take her first steps.  She's been running since November!!!

Miss P actually had the opportunity to meet a couple people that have made an impact on our nation's history and "mankind."  Anyone have a guess?  I'm trying to drop some clues.

Congressman Hall was having an event at his home and he had some special guests there to speak.  We didn't have plans to attend, but realized what an amazing opportunity this would be for Miss P.  If I knew how to scrapbook, this would make for a great page in her scrapbook and a fantastic history lesson for Daddy to teach her in years to come.  So, we decided to stop by for a quick hello.  We were quickly whisked back into a room with Congressman Hall and three gentleman!

The first man that stood up to say, "Howdy," was Gene Kranz of Apollo 13 fame!!!  P had fun flirting with him and learning all about his granddaughter.  Cgsmn Hall was sweet to ask each of them to be in prayer for my healing!
The second man was Neil Armstrong, the first man to step on the moon.  "That's one small step for man, but one giant leap for mankind!"
We didn't get a chance to meet the third gentleman as they whisked us back out as quickly as we entered.

As the men were leaving our precious friend and prayer warrior, H, made sure that Miss P could get a picture worth remembering!!!

Mr. Armstrong about to get in the limo with Cgsmn, Hall.

The "giant leap" in to the limo!

 "Mommy please don't make me go to the moon.  I promise I'll sit still while we read Goodnight Moon."

L to R: Cgsmn. Hall, Miss P, Neil Armstrong, & Gene Kranz

 So, as you can see, Miss P had a pretty special day!  Thank you to everyone that made it possible to create such a special memory for our girl!!!

Little Nate

Many of you recall praying for Little Nate over the last few years that his cancer would be healed.  Below is an update from his Dad.  As well, you can go to Facebook and search for Pray for Little Nate and "subscribe" to the updates.

From Nate's Daddy:

I want to start off by saying thank you for all the continued prayers and support all of you have shown to our family for several years now....we honestly are a very blessed family to have friends like you. Now for an update on where we are. Since the last time we posted an update lots of things have changed and were happening so quickly that we wanted it to make some sense before posting. First of all, we never made it to Duke, they decided Nate's case was too risky and bizarre for the medical center to take on...the doctor would have taken him on but the hospital said no way. When that happened we were brought back out to Los Angeles and have been here for several weeks working with Dr Finlay on what to do. After going literally from there are no more options and this is it to a few days later after Finlay emailed top researchers all over the world and collected some interesting thoughts...we now have a plan again. As has been the case now for several years, the plan is one of a kind never been done before and brings with it many risks but hopefully also a huge reward in eliminating the cancer. It is very complicated and would not make sense to explain it here but because of all the research that I have done through all off this I understand what it is and hopefully what it will do... I have to say, this would be more than huge if it works and it has a very good chance it will otherwise there is no way we would chance it. The other reason for doing this is the reality that the lesions are growing steadily in his head now and time is of the essence and when it comes to Nate there are not much choices left. The first step involves resecting one of the lesions from the brain which will be done first thing Monday morning so we need lots of prayers because brain surgery is always risky especially in areas that it has been done before. They will spend 48 hours examining all of the tissue for evidence of disease before moving into the actual procedure. If there is disease in these growing lessons, which all the doctors think, then we move on to the never been done before stuff. If there is no disease there, well, that is going to turn everything upside down also because scientifically that is impossible to have these lesions growing without cancer in them. In that case, this really is never before occurrences and we will have to figure out what to do next. The greatest thing, which also makes this the hardest thing, is that Nate is getting stronger and stronger every day even with growing lesions in his head and spine which makes no sense at all. This is what keeps us going, but makes it so hard because we don't want to mess him up now, and if it were not for the scans showing everything growing, we would not be doing any of this because he is doing so good. So that is where we are, please pray for the brain surgery Monday and for him not to be harmed and for Dr Krieger the neurosurgeon to be guided by God during the surgery. Please also pray that God will be with Nate all the way and that we as his parents are being led by Him all of the time and that we continue to thank Him for all that He has done. Thank you to all of you.

Seriously....

Well, our home town isn't so "homey" any more.  As you know, both of our cars were broken into a few weeks ago.  Then, while we were at Target today, someone keyed our car.  All the way from the front to the back...Target has video surveillance and they said they are able to release it to the police department.  So, they had us call and file a police report while we were there.  The officer met us at our house since I'm supposed to have another IV infusion today.

The back

moving forward

Front door

All the way to the front!

A good look down the side!!

The crazy thing is that last night we watched one car hit another car at Whole Foods and go inside and never leave a note.  So, we reported it to the police at Whole Foods so that the owner's could file a claim and know who did it.  We asked the management at Target if anyone had reported it...not so much.

So, the officer came over and said that she would go look at the video, but if she didn't know the person that did it, she wouldn't create a report.  Whereas, the officer that handled our cars being broken into said that they might not know the person, but they still file the report.  He said that they might not recognize the person, but they have other guys that might.  Thus, they file the report and hope they can put a name to the face.  Today's officer said she might call me to give me an update, but then made the point that I had not changed my address on my drivers' license since the move!!!  So, I'm apparently the criminal today...keeping our streets safe!!!!

Update....

Two days of rest are "over," seizures are not...

I had eight seizures the first day and three the second day.  I've already had two today.  So, this isn't going according to the doctor's plans.

When we called in to update the doc, she requested that the home health nurse come today and do an infusion of fluids to see if that would help (they believe my overall fluid volume plays a role).  My home health nurse is amazing and always does a great job of getting a line started.  However, she stuck me five times today and still couldn't get a line.  Same thing happened on Monday.  This is weird.

So, we called the doc's office to ask what she wanted us to do...

Instead of drinking 6Liters of water each day, she wants me to increase to 7 liters.  She also wants to start me on a very scary anti-seizure med.  It's very dangerous and one that each doc (including this one) has worked hard to avoid.  However, she feels that we don't have much choice in the matter.

She has ordered more IV fluids for the rest of the week and IV meds.  The kicker is that I'm not able to receive the IV meds if they can't get a line started.  So, the doc said that her next step is to order a PICC line.  She really wants to avoid this, as do we...

Please pray...

A Day of Rest...or TWO

By the seventh day God completed His work which He had done, and He rested on the seventh day from all His work which He had done. Then God blessed the seventh day and sanctified it, because in it He rested from all His work which God had created and made.
Genesis 2:2-3

GOD rested.  Yes, GOD!!!  Since He is God, do you think He really needs to rest?  No, but He did.  Wow! What an example for us.

Yet, I somehow think I can keep on doing all that needs to be done and not rest.  Do I want to rest at times?  Yes!!  Do I make it happen?  Rarely. 

So, my doctor has stepped in with orders to rest...
We've found that each time I'm placed in the hospital, I have fewer seizures.  She believes it is because I am resting.  Whereas, at home, I'm constantly trying to get things accomplished.  Even if it's just sitting up at the computer desk or making food for P or doing a load of laundry.  However, doc says that is too much!  Time to rest.

The reason that she is ordering me to be on at least two days of "official" bed rest is because my seizures have been awful this year.  First, they have increased in number, but they are also a lot worse.  When some of them are over, I don't know what's just happened, I am losing more of my memory, and they are just hitting a lot faster, etc.  I had EIGHT yesterday.  That was with two "rescue" meds.

We've found that prolonged "bed rest" (each time I'm in the hospital they won't really let me out of bed) seems to decrease the number of seizures.  If you can get seizures to stop for a little bit/calm the brain down, you have a better chance of uncovering triggers.  So, here we are on bed rest...I've only had one so far today.  So, Lord willing, no more.

The doc has also ordered an increase in my meds and daily infusions of some of my meds.  Our Rockstar nurse came yesterday to give an infusion and was never able to get a line going...so weird.  She is usually the ONLY one that can get a line going.  So, she'll be back today to try again....

We appreciate all of your prayers and asking how we're doing!!!