Mayo Clinic: Day 3

First, we learned today and it is with great sadness that we lost a dear friend in Brennan Moore.  Please be in prayer for Brennan's family and close friends as his death was very sudden.   

His visitation will be tomorrow night at Rest Haven Funeral Home between 6 and 8 pm. Funeral is to be held on Friday, 11 AM at the First United Methodist Church of Rockwall.
                                                                               
                             
Mayo Clinic- Day 3:

Today, YES TODAY...was a supposed to be a big day.  It was one of those days that starts early and ends late.  Well, that is for the most part what happened.  


We especially were looking forward to this particular day because of what would be our last appointment for the day...our entire reason for coming.


Many of you might already know that from our previous trip here in June of last year, it was discovered that Princess has an unusually large presence of a particular antibody that is most likely triggering her seizures.  Therefore, it would seem that Princess' seizures are more auto-immune related than anything else (i.e., cancer, lesions, malformations, etc.).  So, today we had an amazing opportunity to work with one of the leading experts, if not the leading expert, in this particular antibody, GAD-65.  Now for those of you that like to do research you will find that this antibody usually is associated with Stiff-man syndrome and Type 1 Diabetes.  They are just now seeing that it can also affect the body in other ways, like seizures.


Anyway, we had a busy day.  First meeting was with our POTS specialist who was able to provide a little bit more insight and understanding that POTS and Princess' seizures are truly independent of one another.  However, he did want to defer to the Immunologist that we would be seeing this afternoon.  After seeing him we then had to get some additional blood work done and then off to more appointments.  


Finally, we were at our last appointment for the day- the Immunologist.  Bottom line, he confirmed that given all of Princess' symptoms and her level of GAD-65 present, her seizures are most likely auto-immune.  Secondly, treatment IS AN OPTION!!!  He is confident in both statements simply because of our pregnancy.  GOD IS GOOD....ALL THE TIME!!!  Recall that we felt strongly the Lord leading us to become pregnant and that we did!  In a way, the Lord ran a little test of His own to demonstrate that Princess' seizures improved and decreased throughout pregnancy.  Thus, doing immune therapy treatment would most likely help Princess get rid of her seizures.  Bottom-line, the doc seems to think that Princess would respond well to treatment because pregnancy was good (note that Princess' seizures have increased substantially since giving birth).  Oh and by the way, as many of you have joked, "maybe y'all should just be pregnant all the time..." there might be some truth in that.....NO, we are not!  


Treatment-  our slate has suddenly become even more full as we complete our week here.  Over the next two days we will be doing more diagnostic testing that has not already been completed that needs to be done for Princess' future treatment.  Once the doc submits his write-up and recommendations we can begin treatment in Dallas.  Treatment will involve at least 12 weeks of therapeutic injections of IVIg.  Then we will be back at Mayo in July for reassessment, followed by more treatments over a multiple month time frame, though not as consistent, and then most likely some sort of maintenance schedule to ensure that these seizures/antibody stays away.  


So there you have it.  We are greatly encouraged, especially by our final appointment today, but there is a little frustration in that we see treatment as now being a lifelong journey.  Please pray for that.  Pray for God's peace.  God's healing.  Wisdom for everyone involved.  Thank you and we look forward to seeing many of you soon.  Pray for our strength for tomorrow as we will be very busy and will be trying to accomplish much.

Lastly- for many of us Aggies, we will be meeting at some location or another to gather together for Aggie Muster.  Recall "On April 21st each year, on the anniversary of the Battle of San Jacinto, Aggies gather together, wherever they are, to commemorate fellow Aggies who have died during the year. The tradition was begun 21 April 1903."  Like the March 1923 Texas Aggie urged, 'If there is an A&M man in one-hundred miles of you, you are expected to get together, eat a little, and live over the days you spent at the A&M College of Texas.'  And to that we are doing the same.  If you know someone in the Rochester area please mention to them that we will be having Muster at the Mayo Clinic.  Already we have about 10 Aggies that will be joining us to relive our day of our beloved Texas A&M.  

Day 2

Just a few quick updates.

We woke up to snow today in Rochester!  There is supposed to be a high of 92 today in Dallas!

                                                                                                                                                 

We met with my Neurologist today. 

I left frustrated because the doc basically said he doesn't know why my seizures have increased by about 600% since P's birth.  He threw out the idea of starting a different med.  However, we have seen such great results with the Ketogenic therapy and no meds and not so great results when I was on meds (i.e., yucky side effects and much less seizure control). 

Despite the major increase in seizures since she's been born, I've had 25% fewer seizures on Keto and not taking any meds vs. taking meds.  Thus, meds aren't an exciting idea for me.

The doc doesn't want to prescribe anything (or even give us any kind of answer) until I meet with the Neuro-Immunologist tomorrow.  When you travel this far, you want to walk out of each appointment with answers.  So, it's frustrating to have been here for two days and feel like we've not really accomplished much.

B worked to encourage me that:

a.) I left this frustrated last time, but we received a call almost a month later with the results of the antibody test
b.) This doc doesn't just give answers.  He likes to listen, collect data, and then go do research.  Then, he reports back to us...
c.) This is all in God's timing.

I'm trying to hold on to each of those things.  It's just so hard to be so far away from our sweet little girl and feel like we aren't getting answers.

                                                                                                            
Looking to tomorrow:

Tomorrow will be a very busy day.  We meet with:

*the POTS (Postural Orthostatic Tachycardia Syndrome) specialist
*an OB/Gyn
*the Neuro-Immunologist

Please pray for our schedules and that we will be able to uncover some answers tomorrow and direction in treatment.  Specifically, we are praying that we are able to leave here knowing/having started the treatment that will work to close out this chapter of our lives.

Same Song, Second Verse...MAYO CLINIC Part 2

Stay tuned all week! 

As many of you know we had an amazing opportunity to be accepted into the world famous Mayo Clinic in Rochester, Minnesota in June of last year.  After Critter came we anticipated coming back but did not have a definitive date in mind.  HOWEVER, M's seizures have increased dramatically since Critter's birth and it was top priority to get back to Mayo for possible treatment.

So with amazing parents (thanks MiMi and Pa) arrangements were made for Princess and I to travel to Mayo and Lord willing, begin treatment.  We arrived at Mayo yesterday evening and have already seen God's hand here.  Now His hand is not exactly as you might be thinking....Healing for Princess...that comes later this week!!! But, at our first appointment this morning we were able to make an Aggie connection  with our new friend, "T" '90.  Please Keep T in your prayers as it has been a very difficult battle with many misdiagnosis'.  We are all very hopeful that T will be able to be sent back to Texas with a treatment plan and a new opportunity to get better!

As far a Princess, we did not have much today other than some initial blood-work, and a follow-up with the Keto-Dietitian.  Tomorrow the real work will begin as we have two consults with our previous Neurologists and and they will be setting other appointments for us. 

Please be praying that God will continue to move here!  Princess needs your prayers now more than ever as her seizures have increased nearly 600% since Critter's birth and we hope that we will be able to begin treatment of her seizures while we are here.  As far as treatment is concerned, the idea is to be able to do IV Ig therapy which will hopefully eradicate the antibody that is apparently causing Princess' seizures (discovered at our last trip to Mayo). 

In addition to your prayers for her healing and treatment, please also pray for her strength and endurance as truly each day has been very trying and tiring. 

May GOD be truly Glorified!


"Not I, but Christ in every look and action..."
Not I, but Christ in every word and deed...
Not self-esteem, but Christ-esteem!"

Praise Update on Nate!!!!

I'm so sorry...this was supposed to post on the 12th and I just realized it didn't...Sorry for the delay!   Let's all Praise the Lord, though!!  WOW!
                                                                                                                                         

"PRAISE BE TO GOD!!! Nate's six month brain and spine MRI is all clear. That is the first time he has been cancer free in the brain and spine since diagnosis. Tomorrow he is getting a Pet Scan to confirm no cancer in the rest of the body. The Los Angeles affiliate of Fox News is following Nate, Jake, and his doctors around tomorrow at LA Children's to film a story that will run nationally soon..not sure what date, could be multiple series. NBC, the Dallas Morning News and possibly Good Morning America have also expressed interest. Where all that will go, I don't know, but I do know that God will get the glory and Nate's doctors will be shown much appreciation. The heartwarming part of Jake giving to Nate will be expressed also. You all have been here for us and please know that whatever becomes of Nate's story in the media that it is one of multitudes of people coming together to pray and worship God. This truly could not have happened without the effort and prayers you all have pleaded to God and then praised HIM along the way. God is such a loving God and has shown mercy and love to us. I pray that our collective love for HIM will be shown to the world and that people everywhere will know that Nate's doctors should be given accolades and applause and God should be given worship and praise. Thanks again to all who took the time to pray for, work on, serve, and listen either as a friend, medical professional, or a stranger. May God be with you all. Please pray for a great PET Scan tomorrow and for GOD to be given glory."

Singing Cadets

The Singing Cadets came to Rockwall about a month ago.  This was one of P's first Aggie experiences!!

P in Daddy's arms before the concert.

The Singing Cadets

Daddy in Corps mode.  "Locked up" to sing the Fightin' Texas Aggie War Hymn.

P's first time to Saw Varsity's Horns Off...

Smiles

Sorry that I'm so far behind on posting.  These pics were taken about a month ago.  P was starting to learn how to smile.  You can see the progression.

P's four-legged brother sure loves her.  He is very protective of her.

There's the smile!!

From Connor's Mommy & a little bit from me

For the last few weeks, it seems that each devotional I open talks about obedience rather than outcome.  I've been reminded that it made no sense whatsoever to get out of the boat and walk on the water (Matt. 14:22-33).  However, it was a step of obedience.  There are so many things going on right now in our little world that don't make sense.  I want to hear Him say, "yes, you are healed!"  In the meantime, I'm trying to find the "perfect" answer that makes sense.  Yet, I feel that the Lord keeps asking for obedience rather than outcome.  I still don't know exactly what He is calling me to do, but I am trying so hard to listen and obey.

Then, I received this entry from Joy...
He's saying something to me.  Please pray that I will understand Him and the message He wants me to hear.

                                                                                                                

Monday, March 28, 2011

This part of our journey has been difficult because I have had a hard time dealing with God's answer of "no".  I think back to when I was a child, and how difficult it was sometimes when my parents said "no" to me.  Even then, those answers seemed crushing and disappointing to me.  I had a hard time dealing with that "no".  I look at my five year old Mason and see how he responds to me when I answer his questions with a "no".  It is often followed by denial, a tantrum, or tears.  Many times he will say "Then, you don't love me if you won't let me do that.  You're not taking good care of me."  I laugh to myself when he says those words to me; but in reality, his thoughts are not so far off from mine with my Heavenly Father.  I just shared last week how I felt unloved because of God's chosen path with Connor.   

So, where do we go when God says no?  That's where I stand today.  Learning to move past this struggle is my defining moment, I believe.  I guess the one thing that I have been focusing on lately is the fact that Jesus had to deal with God's answer of "no" also.  "My Father!  If it is possible, let this cup of suffering be taken away from me.  Yet I want your will to be done, not mine."  Matthew 26:39

Jesus prayed these words when his death on the cross was eminently near.  Jesus was also asking to see if there was another way.  We all ask God if you are powerful enough to do things differently, why don't you? How can I accept your comfort and believe you want to heal my broken heart when you could have kept me from experiencing this sorrow in the first place?  This is where we have inner conflict - what we want and believe is best seems to be at odds with God's plans.  Listening to Jesus' struggle with this helps me to move through this conflict.

 "While Jesus was here on earth, he offered prayers and pleadings, with a loud cry and tears, to the one who could rescue him from death.  And God heard his prayers because of his deep reverence for God.  Even though Jesus was God's Son, he learned obedience from the things he suffered.  In this way, God qualified him as a perfect High Priest, and he became the source of eternal salvation for all those who obey him.  Hebrews 5:7-9

Well, I can certainly relate to the prayers and pleadings with loud cries and tears.  When God answered "no" to me, I felt as if God did not hear my prayers.  This verse assures me that He did.  I'm certain that He heard His son's prayers, yet He still answered no.  It gives me comfort to be reassured that God is always listening to our heartfelt cries, even when He seems to be ignoring them.

Jesus' reaction to God's answer of "no" gives me an example to follow in my own life.  Like Jesus, I'm trying to learn obedience through suffering.  It helps me to know that Jesus wrestled with God's plan for his life and death, even as he submitted to it, because I have wrestled with God's plan for my life even as I have tried to submit to it.  Jesus responded to God's answer with "Not my will, but yours be done."  This is the attitude I'm praying for in myself.  I'm standing on a precipice, looking out into my future.  I'm holding my plans, my dreams, my pain, my doubt, my loss and my faith in my hands.  The question is will I surrender all of these before my Heavenly Father?  Right now, I'm doing it through gritted teeth, but I hope someday it will be with open, willing hands.

Always believing,

Joy Cruse

Update from Nate's Mommy

Subject: Update on Nate - 03/17/2011 - from Jackie

"Nate is doing very well. He has been spending his days playing and working on regaining strength for everyday tasks. He has some really good days and some that are a little more difficult. We are waiting to go to the endocrinologist at the end of the month. This doctor will address his hormone and growth issues. He will be returning to LA in April for his 6 month post transplant scans and follow up visits. It is hard to believe it has been almost 6months since the transplant. Please continue to pray for Nate and his complete healing of cancer and the side effects of treatment. There are so many children who are fighting this terrible monster. If you want to pray for a few extra kiddos I am listing some who are close to our hearts and who are fighting . (Miceala , Matt Romig, Matt Burbee (continued remission), Nathaniael, Collin, Ethan, Devon, Vincent, Little Jacob and many more.)

If you are looking for a way to help with the fight for a cure, I have attached some information about the St. Baldrick's foundation on the Pray for Little Nate site. One of Nate's doctors in LA is participating this year. He is raising funds and shaving his head trying to raise awareness and funds for cancer research. No donation is too small, all proceeds help with cancer research. Thanks for taking the time to look at it. love, Jackie"

Direct Link

As B put it, "someone that was praying has a direct link to the Lord!"

WOW!!!  About an hour after I posted last night, she fell asleep and slept until 3:15a.  B fed her and put her back down around 4ish.  She slept until around 7:45a.  PRAISE THE LORD!!!

Thus, THANK YOU!!!  You are amazing prayer warriors!!  Thank you so much for your precious prayers for our family!  She seems to be going down okay this evening.  We still covet your fervent prayers, though!! 

I promised a picture in the last post.  So, here is a pic of our little one!

Also, will you please pray for my seizures.  I had five today that were really bad.  One was with the neurologist.  She did the standard tests that they do during a seizure (i.e., asking me to repeat words back to her, squeeze her hand, etc.).  However, I could not answer any of her questions or repeat any words back to her.  I apparently squeezed her hand at least one of the times that she asked me to...I do not remember any of this.  She and B told me about it after the fact.

Anyway, I have been very confused at the end of each of my seizures today, not really knowing what happened.  The doc wants to get a home health agency set up to come and help me throughout the day.  So, we are praying for insurance to approve that request.

We are also praying about having someone that could come to the house each day to help me with P.  If my seizures are like they were today, I'm not comfortable being left alone with her.  Will you please continue praying for her sleep and also pray for my seizures and someone that could come help at the house!

God Bless each of you and thank you for your fervent prayers!!!

URGENT Prayers

I'm hoping to have more updates to come in the very near future (with pictures)!!

We are crying out to all of our prayer warriors tonight because we are in desparate need of prayer.  P has not slept more than five hours per day (24hrs) total in the last few days (babies at this age should be sleeping 16+ hours/day).  The doctor had us come in today because she was very concerned about it.  She gave us a few things to change and we have changed all of them. 

It is 9:30p and we've been trying to get her to sleep since 6:30p.  She is screaming at the top of her lungs and has only stopped to eat for about ten minutes.  We are both exhausted.  Seizures have increased for me (not to mention crazy hormones) and B is working so hard all day and then coming home and staying up most of the night with her, as well.

Please pray that she will get to sleep!!

From Connor's Mommy

Tuesday, March 8, 2011

I know it's been awhile since I've written Joy's Journal.  To be honest, I have sat down several times to write it and I have struggled with what to say.  Many thoughts and struggles are filling my head.  I'm trying to grasp something that would be constructive and inspirational.  I decided to just start with how I feel.

Tait and I have learned that the most difficult part of this journey with God and our faith has not been when Connor was still alive.  When Connor was still fighting for his life, when we had hope for his healing on earth, it was easier to hold on to our faith.  We still had hope that God would bring about the miracle that we had prayed for.  He could still show himself to be powerful and good and trustworthy.  But, when prayers go unanswered and when your biggest heart-felt prayer is crushed, how do you get past your devastation with God?

I've read many books and listened to many speakers who address our faith and hope when we are in the midst of our fight, but what about those of us who have lost our battle (meaning our earthly battle).  I know, I know that there is Victory in Jesus.  He has won the battle for eternity.  Without this knowledge, I would be derailed once and for all.  This is my hope for the future.  But, I guess what I'm saying is how do I get through the pain of the here and now -- when missing Connor still makes my heart ache?  Where do we go when God says no?  I feel like this is the time when we are at our most vulnerable.  This is the time when we are all the must susceptible to losing our faith, to becoming bitter and angry - to feeling unloved.  I think this is where we all need the most help.

As Tait and I were driving by the cemetery where Connor was buried, a song came on the radio "Oh, how He loves us".  I just burst into tears.  I realized that for once in my life, I didn't feel loved by Him.  What I felt was irony, tragedy and betrayal.  As I was listening to how much He loved me, I couldn't help but think "really?" as I was looking at where my son's body lie under the ground.  You love me, yet You let this most horrible thing happen to me?  How do we reconcile these feelings with the knowledge that He loves us?  In my head, I know without a doubt that He loves me.  In my broken heart, I can't get past the wall of pain to see His love residing there.

I realize that this is part of the grieving process.  I believe that I have moved into the angry stage.  It is something I will move through.  I debated all month whether I should share these feelings.  Some will misunderstand.  Some will judge.  And those of you who have experienced some kind of loss of your own - loss of a loved one, loss of a marriage, loss of innocence - I know you will understand.  So, I write this for you.  I want you to know that you are not alone in your feelings of devastation and frustration.

This is such a crucial crossroads.  Do we trust these feelings of abandonment and disappointment, or do we continue to stay on the path of God's Hope and Eternity set before us?  I know there is no easy answer, no easy solution.  But I think there is healing in sharing these hurts, expressing our pain.  Being honest about this feels like a betrayal on my part..  As if I'm not trusting God enough - like I'm weak.  At the same time, I think that voicing these honest feelings will help.  I think, for me, it's like letting the poison out of my heart.  This way, I can move towards healing. I want  to share a song with you.  "Blessings" by Laura Story

We pray for blessings

We pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

All the while, You hear each spoken need

Yet love is way too much to give us lesser things

'Cause what if your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're 

near What if trials of this life are Your mercies in disguise

We pray for wisdom

Your voice to hear

We cry in anger when we cannot feel You near

We doubt your goodness, we doubt your love

As if every promise from Your Word is not enough

All the while, You hear each desperate plea

As long as we have faith to believe

When friends betray us

When darkness seems to win

We know that pain reminds this heart

That this is not our home

What if my greatest disappointments

Or the aching of this life

Is the revealing of a greater thirst this world can't satisfy

What if trials of this life

The rain, the storms, the hardest nights

Are your mercies in disguise

Not sure I'm there yet - feeling like Connor's death was a mercy in disguise.  Someday, I hope I will be.

Always believing,

Joy Cruse