Nate Update

"The final results from the MRI have been written and Nate has some new tumor in his brain, the lumbar puncture also showed cancer cells in his spinal fluid. Nate's team of doctors met today to discuss what would be best for Nate at this point. We have two options, proceed with the transplant and make some adjustments to the chemo or go home. We are planning on moving forward with the transplant. I wish you all could see him laughing and playing. Today we went to the park after his doctor appointment, he and Luke were looking for the ice cream man. Nate was saying, " Oh Mr. Ice Cream man come out,come out where ever you are." Then he got mad when I wouldn't let him play on the playground by himself. These things are not special in anyway, but served as a gentle reminder to me that he is still a regular 4 year old boy. Also, some of you may be aware but mailing address has changed to room #30 Oxford Family 4560 Fountain Ave Room #30 Los Angeles, CA 90029. Please pray for wisdom and strength as we move forward."

Praises for Nate!!

"Nate's doctor just sent Wes an email and the preliminary results from the MRI are CLEAR!!!! We are very excited and thanking God for the good news. Nate still has two very important tests that are checking for tumor. He has a biopsy tomorrow and the date of the PET scan is unknown. We will not get the biopsy results for several days, but I just wanted to share this good news today.
We have been lowering the dose of his pain medicine gradually and he seems to be doing well. Yesterday Nate looked and felt so good, I asked him how he was feeling. He said, "mommy I don't hurt anywhere." It has been months since he has been totally free of pain.
We have many tough days ahead and this battle is far from over for Nate, but today we are rejoicing! Love to you all!"

Message #2:
I wanted to let everyone know that there is now a Pray for Little Nate and a Pray for Little Nate 2, Facebook group. This second group was created because the first group had a messaging limitation of 5,000 members. FB does not allow updates to go out once it is over 5k people. The second FB group, Pray for Little Nate 2, will mirror the first group. Please tell anyone new wanting to get updates on Nate to join the 2nd group and the same update will be sent as on the 1. Thanks for all of your continued prayers and thoughts for Nate and the Oxford's.

Nate Update

"Nate's doctor called us this afternoon and he is pleased with the results from Friday's scans. They weren't totally clear, but there seems to be logical reasons for the spots that showed on the scans. This was the first of three tests. He will have an MRI next Tuesday and then a marrow biopsy and lumbar puncture next Wednesday. These will complete the tests that are checking for remaining tumor. We are thankful that the scans seem to be good and the doctor feels we are still on track for transplant next month. In the mean time, Nate is having a series of tests checking his organ function as he approaches transplant. We are staying busy with doctor appointments and tests. He is finally gaining weight and healing well after last week's surgery. Thank you for your continued prayers!!!!!!"

What is a Miracle?

It's what we've been praying for..

It's something man can't accomplish on his own...

Miracle-An event that appears inexplicable by the laws of nature and so is held to be supernatural in origin or an act of God.

Truly, when people have asked us how to pray, our answer has been, "pray for a miracle!!"

When we were at the Mayo Clinic, one of the docs we saw in endocrinology told us that my hypothalamus and pituitary must be working just fine (there was a concern that they were not, which is why we were referred to him).  He told us that the way he knew this is because we were pregnant.  He told us that pregnancy is a miracle in itself.  For every little hormone to release at just the right time is quite a miracle.  Thus, if mine wasn't working properly, we wouldn't have become pregnant the first time we weren't "careful" or possibly at all.

So, we praise the Lord for this miracle that HE has created inside of me.  WOW!!

Part 2:

Due to this sweet little miracle, I have struggled to eat much at all.  Since all of my food has to be weighed on a gram scale and eaten within a certain amount of time, this can't keep happening.  I have struggled most to get my proteins.  So, we found out about Whey Protein.  My dietitian at Mayo recommended it and my PCP agreed.  However, the day I started eating it, my seizures increased and I became sick.  I ate it the next three days at lunch.  The first 13 days of the month, I had 13 seizures (avg 1/day).  In the three days that I ate the Whey Protein, I had 21 seizures (avg 7/day)!!!!!  Why the increase?

Well, I received an e-mail from a parent on the Ketogenic Forum with a list of all of the "other names" that MSG (aka: glutamic acid) can have...one of them is Whey Protein!!  So, we decided no more whey protein.  

In the meantime, I checked the mail and had a letter from the Mayo Clinic.  This letter included my labs.  While at Mayo, my full antibody panel had not made it back.  However, it is back now...

My GAD-65 (Glutamic Acid Decarboxylase) should be <= .02

Mine was 4,415!  Yes, you read that correctly...four thousand four hundred and fifteen!!!!

There was a description beneath these #s that stated:

"it is consistent with organ specific neurologic autoimmunity and predisposition to thyrogastric disorders, such as thyroid autoimmunity, pernicious anemia, and type 1 diabetes."

Hello, I have an autoimmune thyroid condition and we've been asking how this could play into all of this since Day ONE!!!

I put a call in to my neurologist at Mayo today to see what his take was on all of this...he called back this evening to tell me that he had just sent me a letter telling me about his findings.  He spoke with my other neuro and a neuro-oncologist.  They said this means that I have a Paraneoplastic Antibody
which can lead to limbic encephalitis of the temporal lobe.  It can cause cancer and so he wants me to stay on top of mammograms and pelvic exams to continue to rule out cancer.  Though he said that having made it this far without any cancer cells is good news!!

The neuro-onc that he spoke with said that the truth is that treatment is usually best upon onset of the disease.  The fact that we are 4.5 years out could work against us.

The way they treat is through immuno-therapy:
1. high dose steroids
2. IVIg (Intravenous Immunoglobulin)
3. Plasma exchange (plasmapheresis)

He doesn't believe that any of them are safe during pregnancy.  So, as long as I'm not having any generalized seizures, he wants to wait until after the baby is born.  The doc that would be doing the procedures said that 4.5 yrs into this could be too late to treat it.  However, I asked what role pregnancy could be playing...

He said that since pregnancy causes immunosupression that could be why I have had fewer seizures since pregnant.  The hope is that it will continue...he said that after delivery the seizures would probably increase.  However, that could be the "new start" that we need for the treatment to work...

His final statement was, "As I told you, it's rare that we ever have a reason as to why seizures start.  However, I think in your case, we might have an answer!!!" 
 

WOW!!  The tears are flowing again as I type this!!!  PRAISE JESUS!!!  God, YOU are the Hero!!!!

I couldn't stop the tears or stop from saying, "Praise Jesus," as he was telling me this.  Can you believe it?  He thinks we have an answer!!!  As well, this precious miracle growing inside of me, could be the miracle we need to restart my immune system so that the treatment may work....WOW!  Thank you, Lord, for our miracle that we have been praying for...!!

He wants me to come up after the baby is born and start IVIg treatments...Praise the Lord!  Could we really be seeing the light at the end of the tunnel?  Could this precious baby, this Miracle, be the Miracle we need for healing, as well?

Only the Lord knows, but we are holding out hope that this will be HIS miracle!!  God gets to be the HERO of this story!!!  Praise HIM!!!!

Nate Updates

July 16th Update at noon:
Nate has had a very intense week. Wes and I have had several conversations about how strong and determined our little guy is on a daily basis. Things have not gone exactly as planned, but we are still on track. The treatment is built around Nate's response so we change as his body does or does not cooperate. He has a pet-scan today. Please pray for great results. The doctors are looking for any tumor that may still be on the bones. God always takes care of our needs. We have a friend in town this week and she took care of Jake and Luke so they did not have to endure the long days at the hospital this week. We appreciate her so much!

 July 16th Update at 10pm:
"We will not get scan results until Monday. Praying for good news!!!!" 

From Nate's Mommy

"Nate is going to have his line placed on Tuesday and should have his stem cells harvested after that. The doctors are taking Nate's cells just for back up. The plan is to transplant with Jake's marrow. Jake should be harvested soon after Nate. We are still continuing with tests in preparation for the transplant next month. Nate is feeling great and has a good energy level. He is struggling to keep his weight up right now. He has lost weight and it is somewhat of a concern since we know weight will be an issue during transplant. The last couple of days he has started to eat more and we are praying this trend continues. We are happy with the progress and are continuing to pray for God's hand to be on Nate and the doctors. We are thankful for the support and prayers that we feel during this time. We are continually amazed by the love that we are shown by family, friends, and strangers. We have had an opportunity to meet some wonderful people here at the Ronald McDonald House. We all have a different story but share the common bond of a sick child. I am constantly reminded that even in the middle of our storm we are not alone and there are many who face similar pain and uncertainly, but God is holding us all. I pray you all have a blessed week and see God's grace and mercy each day."

From Connor's Mommy

"Before The Morning"
Lyrics By Josh Wilson
 
"Do you wonder why you have to
Feel the things that hurt you
If there's a God who loves you where is He now
Maybe there are things you can't see
And all those things are happening
To bring a better ending
Someday somehow you'll see you'll see
 
Would you dare would you dare to believe
That you still have a reason to sing
'Cuz the pain that you've been feeling
It can't compare to the joy that's coming
 
So hold on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you've been feeling
It's just the dark before the morning
 
My friend you know how this all ends
You know where you're going
You just don't know how you'll get there
So say a prayer
And hold on cause there's good for those who love God
But life is not a snapshot
It might take a little time but you'll see the bigger picture
 
ONCE YOU FEEL THE WEIGHT OF GLORY
ALL YOUR PAIN WILL FADE TO MEMORY
 
It's just the hurt before the healing
Oh the pain that you've been feeling
It's just the dark before the morning"
 
I've been trying to sum up how I feel about Connor's first Anniversary of his welcome to heaven.  I've been listening to this song for months now and it expresses both the pain I feel and the hope I have in Christ.  As July 10th approaches, Tait and I have been remembering the days that led up to Connor's passing.  These memories mainly consist of Connor's pain and suffering.  It's like reliving it all over again.  But then, it was like Connor spoke to me and said "Mom, I'm not like that anymore.  I am not suffering or in pain.  Don't put yourself through that misery anymore.  You're going through unnecessary pain, because those days are over for me.  Why put yourself through that?"  
 
So, I'm taking Connor's advice.  I'm focusing on the morning or the dawn.  I'm focusing on God's promises to restore joy to our lives. "The sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us"  (Romans 8:18.). Our pain and struggles are very real, but they are only the dark before the morning.
 
It's like what Pastor Graham said at Connor's service.  "Don't trade what you do know for what you don't know."  I don't know why this had to happen to Connor.  Why did he have to get two cancers by the age of 8?  Why did he have to die?  I may never know those answers this side of Heaven, but I do know a lot of things about God.  He loves us, He will never leave us, He died for us and He prepared a place for us in Heaven for those who love Him.  I will choose to focus on what I do know and the dawn.  Someday, I will see Connor again and God's glory will be revealed to me.  That is the promise I'm counting on.  Until that day, I will fight the good fight until I see His face, like Connor would have wanted me to.
 
"I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow.
Restrain your voice from weeping and your eyes from tears, for your work will be rewarded.  So there is hope for your future, declares the Lord."                
                                                                        Jeremiah 31:13 &16
 
Thanks to all of you for your words of encouragement through phone calls, cards, e-mails and facebook entries.  We appreciate your prayers and support more than you can know.
 
Always believing,
Joy Cruse

Praise the LORD!!

We have all been repeating this over and over this evening.

I needed to run a few errands today and Mom was able to take me.  Since I seem to have "popped," I needed a new pair of black shorts.  B took me to Target this weekend and the maternity shorts looked like they doubled as a turtle neck (the belly band was so long).  So, I have a gift card to Motherhood Maternity that my sweet mother-in-law gave me five years ago, when we were pregnant the first time.  I've not been able to use it and so I was excited for the chance.  Mom took me to the closest Motherhood Maternity we could find...I was able to get some cute basics.

Then, Mom took me to Herb Mart to get more of the supplements that I have to take.  As we were leaving, I started to have an aura and made it to the car.  It passed quickly.  I leaned over to get my snack and (TMI Alert!!!!!) felt a rush of something in my pants.  I decided to use the bathroom at Herb Mart to make sure all was okay.  There was blood all the way through to my shorts. 

So, we called my OB.  He was off today.  However, he happened to be in the office doing paperwork and so he was willing to see me!  I pray that God multiplies the blessings upon this man for his precious heart and we're trying to decide what a good gift would be that we could give to him this week.  Mom got me there in a flash.  B was in an appt., but I reached him as we were walking in the building.  He turned his truck around and rushed to meet us.

Doc did an ultrasound and baby was just fine.  Good heartbeat and moving all over the place!!  Mom got to hear the heartbeat for the first time.

Baby has already grown so much since last week at Mayo.  We could see arms & legs today.  You can see the legs in the picture below, but what appears to be arms he said was the umbilical cord...

B made it in time to hear the heartbeat and see the baby dancing around, as well.  On his way, he had his Mom, our pastor, and many others praying...he even reached the high risk OB at Mayo.

It was beautiful to see the baby moving and see that heart beating.  The doc said that he could not explain it and he thinks that is best b/c the things he is able to explain aren't any good.

Here is our sweet baby:

See that cute little leg & foot?

So, doc has said that he wants me to spend the next few days on bed rest.  We already had an appt. scheduled with him on Friday.  Thus, we will be able to check again to make sure baby is still doing well.

We couldn't stop saying, "Praise the Lord," over and over again after we saw that everything was okay...

Thank you all in advance for praying for our sweet little one that he/she will grow to be a precious healthy young thing, that there will be no complications, and that I will be able to rest so that this little one can grow.

Mayo Wrap-up

I'm so sorry it has taken us so long to get this update posted...

Friday started with a visit to the Pituitary Specialist.  His fellow saw us first.  She was very thorough.  Then, he came in and asked us how long it took us to get pregnant.  When we told him it was the first month we weren't "careful," he said that was all that he needed to know to rule out the hypothalamus/pituitary.  He said that it is difficult to get pregnant and requires so many things to work in the hypothalamus/pituitary.  Thus, if it was "easy" for us to get pregnant, he's not worried and sees no reason for additional testing.

The only testing that he wanted to confirm was the Diabetes Insipidus diagnosis (I excrete much more than I consume).  However, he said it would be "stupid" since we are pregnant (the testing is a water deprivation test).  So, he ordered a urine test while we were there.  Based upon those results, we might repeat the testing here.

Our next appt. was with the Keto dietitian.  She was precious.  She gave me access to the KetoCalculator (how you design meals on the Ketogenic Diet).  I have a new dietitian in Dallas, but she doesn't have KetoCalc access.  So, this should be helpful and they should be able to work together. 

The new dietitian agreed with all that I am doing and liked my spreadsheet (being OCD pays off occasionally)!!!  I asked her if she wanted to design my meal plan or adjust anything, she said she didn't, that she trusted the way I was doing the math.

The biggest key is going to be all of the growth studies that they will be doing throughout the pregnancy.  If I am losing weight or the baby isn't growing, we will adjust things.  Though my stomach is definitely pooching and pants are getting tight, we found when we got back home that I've lost weight.  So, I will probably need to increase my calories.  We will try to reach out to the new dietitian on Monday for her recommendations.

After this, we were able to get back in with the POTS specialist (the mean guy from NY) for a 15 minute appt.  I asked B if I could go by myself since he seemed to ignore everything I said and only listened to B.  So, B went back and packed everything for us while I met with him. 

It was a much nicer meeting.  I explained my frustrations with the way he behaved and why I needed to step out of the meeting.  Once he sat and listened to me, rather than telling me that I wasn't telling him the truth, things got better.  I shared with him that me repeating diagnoses from other docs was not me lying, but me repeating what we've been told. 

He also told me that he didn't like me dropping names.  I asked him what he meant by that...apparently, the doc that I saw for my POTS diagnosis (the study that I was in at the end of 2007) is very well known in the dysautonomia world.  I told him that I had no clue of that and if I was going to drop a name it would have been the neurologist that they brought in from the Cleveland Clinic before my surgery.  Once he realized that I had no clue that my POTS doc was a name worth dropping, that got cleared up, as well!

So, we got on the same page and were able to truly discuss the issue at hand (for over an hour and a half)!  Overall, he believes that most of my seizures are autonomic, but some might not be...thus, if we can treat the dysautonomia, we might be able to treat some of the seizures.  He wants me to increase my sodium consumption to 6-8g/day with most of it coming through food and the rest through supplements.

He said that most people grow out of POTS.  When I asked how long it takes, he said usually 6mos-1 year.  I am coming up on three years since I was diagnosed...so, he agreed that my case is different.

That was basically the end to all of our appts.  If you've made it this far in the post, thank you for your love and concern.  I know I have said way too much!  We sure appreciate all of your prayers!

As we have said from early on, we want God to be the hero of this story.  I had truly hoped that HE would use the Mayo Clinic to get us there.  However, it appears that HE is going to be the one, all by HIMself.  All of the docs there agree with my docs in Houston that this is a very rare case and they really don't know how to treat it. 

So, come on Lord!!!  You get to be the complete HERO of this story!  The #1 Neurology clinic in the world has said that they don't have an answer or a cure.  So, if I am healed, it is YOU, Lord!!  It will clearly be YOU!!  All credit is YOURS!!!

Who is Your Hero?

Ours is God!!!

As we have said from the beginning, we want God to be the hero of this story!  After today, it appears that is exactly what is going to happen...

First, God continues to answer your prayers with timing...

We had our first appt. today with the OB dietitian.  She shared with me a few things that we will need to change for the sake of pregnancy and our little one's safety.  However, there aren't too many changes and we think these should be fairly easy transitions.  She is sharing all of those things with the Keto dietitian.  So, when we meet with her tomorrow, she will be able to design meal plans based on the new recommendations.

Second: as we were leaving that appt., we received a call from the cardiologist's office that he could see me sooner.  So, we went straight over to his office.  He said that my heart is healthy!!  That is a huge praise!!  I was told that my heart was 1/3 smaller than that of a healthy sedentary female & my stroke volume was 1/3 less.  He said that with the POTS diagnosis, my stroke volume might be lower while standing.  However, laying down, my heart is just the right size & stroke volume is on target.

Mayo is one of the leading research facilities with POTS.  This doc shared with us that the main thing they have learned is that it is not a cardiovascular issue, it is an autonomic issue; thus, treated best by Neurologists.  He used to treat POTS patients, but they no longer do at Mayo...he said that he can't tell me what to do, but he can tell me what not to do.  That is: Don't see a cardiologist for POTS.  Well, the only two docs we have found in Dallas that treat POTS are cardiologists.  So, we are going to need to uncover more there.

He kept stressing the autonomic aspect of POTS.  Throughout this journey, we have been told that my seizures sound autonomic in nature, but no one was really willing to give them a name.  This doc kept emphasizing how the POTS is autonomic.  So, we did some research on autonomic seizures and it's amazing how accurate this description is...it even says to test your thyroid levels.  My first real health issue ever was when my thyroid went crazy in 2004.  We have been asking the docs about how it could play into all of this...every single one answered that it couldn't...well, we found some research today that stated otherwise. 

Thus, we were super excited about my appt. this afternoon with the endocrinologist.  We just knew that he would be able to put all of the pieces together and explain how my thyroid was the start of all of this...well, he said, "your thyroid numbers are fine.  Do you need anything else from me?"   Grrrr....
We tried asking the question fourteen different ways to get at the fact that just because we were supplementing the right amount doesn't mean that my thyroid is treated 100%.  He didn't agree and said that all he treats is the thyroid and if it was anything else endocrine related, he would have to send me on to another specialist.  So, he has referred us to another that we hope we can see tomorrow.

Finally, we went to see if we could get an appt. with the neuro (so that we don't have to come back on the 15th).  Though it was after 5p, he agreed to see us!!!!  WOW!!!  So, he basically told us everything we've already been told and said that he doesn't really know what to do, but maybe we should add another med. 

I asked why we would do that since I had more seizures on meds than I've had since switching to the Ketogenic Diet.  He said it's because I am still having seizures.  I kept trying to make the point that I'm having fewer than when I was on meds, but it kept going over his head.  So, we agreed to go home, pray about it, and talk about it once we are in the 2nd trimester.  Research shows that once you have tried 2-3 meds and they each fail, your chances are less than 5% that another will work.  I've been on nine different meds....so, the statistics are low!!!

Anyway, the final options that he offered are surgical and aren't yet approved.  So, it would be next year, at the earliest, before they could even consider those choices....However, he feels meds are the way to go...

It was so frustrating leaving his office and not feeling like we uncovered any answers.  So, this has got to be about the Lord & His healing.  We meet with the dietitian in the morning to look at the diet in more depth and see how we can better treat these...the man that brought his son (that had epilepsy) to Jesus for healing, was told by Jesus to Pray & Fast.  The Keto Diet mimcs fasting.  Thus, we keep telling ourselves this is a Biblical approach!!!  This is about God being the hero of this story since man can't seem to do it on his own!!!!!

All of this to say, we have an appt. with the dietitian and the pituitary specialist tomorrow.  Then, we should be headed home...your prayers are such a special gift to us.

Thank you & sorry I don't have any good pictures!!!

MAYO Clinic-Day 3

Once again, y'all are Rockstar prayer warriors...

Today was a pretty good day.  We started with being able to get my EEG done this morning, rather than this afternoon.  This will hopefully allow the doc more time to read it and it opened up the afternoon to accomplish more...

Then, we met with the autonomic specialist, the guy that deals with POTS.  This was my least favorite appointment.  He was quite rude and asked me to, "prove it," many times in our meeting.  This was in reference to diagnoses that we have received from other docs.  Anyway, he had me in tears and I asked him to please stop treating me the way he was...he didn't.  So, I left the room.  Ben stayed in with him for the next hour and a half and shared my medical history.  Basically, he didn't believe everything that we were saying that is so rare...he didn't read my file before he came in the room.  Every other doctor has spent over an hour reading my records.  Once B told him that we had exhausted every option in Texas and that even our docs in Texas said that they had never seen a case like this, he apparently changed his tune and started listening.  Then, he read through my chart with Ben and things he had disagreed with me on...he read written in my chart and seemed to understand finally.  His excuse to Ben about his attitude is that he is "a New Yorker..."

We left there and I had an echocardiogram done.  They can't use the ultrasound gel on me because it triggers the seizures.  So, we had to get creative.  She actually got a cup of water and gave me a bunch of gauze.  I literally laid there squeezing water on to my chest the whole time she did the scan.  It was interesting, but it worked!!!!

Then, I had my MRI done...we met a sweet couple while waiting to be called back for the test.  While I was in the test, B was able to get a little work done.  Then, he had a chance to speak with this wife.  Please be in prayer for them, Diane & Doug.  He has been diagnosed with Lou Gehrig's disease.  They are hoping it is an inaccurate diagnosis.  She is also a cancer survivor like B!  So, it was a special connection!  Please keep them in your prayers!

Then, we went to each of the appts. that I have scheduled for the rest of the week and tried to rearrange them so that we can leave on time Friday.  The praise is that we were able to move my appt. with the cardiologist next week, to an appt. tomorrow morning!!!!  So, now, the only appt. that is out of the way, is the neuro on July 15th!  We are hoping to get that changed tomorrow.  Otherwise, we will need to fly back up here for that appt.

We met a precious family here through one of B's clients.  The hubby works at Mayo and they have been precious to offer anything that we might need.  We were running low on lettuce for my salads and she went to the grocery store for us and not only blessed us with lettuce, but she also bought some yummy snacks for B and she brought me a rose. : )  Her oldest son (12 years old) was with her and he was such an impressive young man!!!

Finally, we decided to go sit outside the hotel and rest.  On our way out, B stopped in the coffee shop here.  A guy walked up behind us and said that B looked familiar and asked for his name.  Turns out they were in the Corps together!!!  There sure are a lot of Aggies in Rochester.  Anyway, he is doing his residency here and so we got to catch up with him, too!  Such a small world!

Now, we need to get to sleep since we only slept four hours last night b/c of my EEG.

Please be praying for:

• Our appointments to flow smoothly tomorrow.
• For our disc to arrive from Houston
• That the neuro will have time to view the disc & see us before we leave town on Friday.  It would be great to not have to come back up here in two weeks.
• We have one appt. that we are trying to get moved from Friday afternoon to tomorrow or Friday morning!  
• That the docs will be able to uncover the cause or a solution to all of this.
• That our sweet baby will continue growing into a healthy little baby!!
• That we will be a shining light for the Lord while we are here.

Thank you all so much for checking in and praying!!!!!

MAYO Clinic- Day 2

Whew!!!!!  What an amazing day!  Praise the Lord!  

Clinically speaking, we did not have much to report yesterday.  Today was our first day to truly get a taste of what Mayo has to offer.  WOW!  Part of the focus here is to have a team approach and we saw that in action.  Our neuro scheduled quite a few tests that led to other appts, then those appts. led to the scheduling of more tests, etc...each doctor has spent no less than two hours with us.

Thanks to you amazing prayer warriors we were able to not only knock out today's schedule of tests, but we in fact were able to knock out many of the appointments and tests that were originally scheduled for the next couple of days. THANK YOU and PRAISE THE LORD!!!

We still have a lot more tests that need to take place and doc appts that need to be moved up...however, we saw the Lord's hand working today in making so much happen.  So, we're ready to watch the miracle unfold tomorrow, as well.

We started the morning with blood work and then progressed to many of the cardio-focused tests that were ordered (i.e., confirming my POTS diagnosis, doing an ECG, & getting a Holter Monitor).

After our day was done, we realized that we were running low on our water (the water in our hotel comes out a foggy color-yuck) and so we needed to head to the store to get more.  So, taking advantage of the incredible weather, B pushed me in our borrowed wheel chair across Rochester to the local HyVee Supermarket.  For all you Texans, and those that know what triple digit temps are like in June, July, and August, let's just say that 85 and no humidity is, well...VERY NICE!!!!  I have actually had goose bumps for most of the trip.  B has been perfect & comfortable.  He is loving it!  Hopefully, we can bring some of the cooler temps back home to the Big D.

Since I have to take every meal with me, we have had coolers attached to the wheelchair the entire time.  On our way back from the store, we heard a man say, "Gig 'Em Aggies!"  We had our A&M cooler hanging on the wheelchair and he saw it as we passed him.  Turns out he was a student at A&M & his daughter was there while B & I were, as well.  He also grew up in New Braunfels and was a life guard at T Bar M (this is the camp that B grew up attending and worked at through college).  Such a small world.

I had one appt. this afternoon with a physician that happens to be from Texas.  So, we had fun with that connection.  While we were meeting with him, he actually showed me the results from my autonomic tests & other labs from this morning.


The basic findings are:

• I do have POTS (we should learn more about this from the specialist tomorrow when we meet with him).
• He believes my thyroid levels are good, but it is still clear that it is autoimmune.  We have an endo consult and hope they can elaborate.
• He doesn't see the seizures as being an issue for...
  
• Oh, during one of the scans that he ran today, this is what he found:

 YEP, it's a baby!!

 A 10-wk old baby!!!

This is one of the many reasons that we were thrilled to be coming to Mayo.  We found out in May that we have a little one on the way!  Since we lost our first baby (in 2005) at around 8wks, we have been cautiously optimistic.  We have been seeing many different high risk OBs over the last few weeks to see what risks come with seizures, the Ketogenic Diet, and pregnancy!!

The high risk OB was the doc that we saw today and he said that he's not that concerned...the fact that I'm not able to be physically active without triggering seizures is his biggest concern because I could get blood clots.  However, he seemed very excited for us and confident!!!  So, we felt it was time to share the news and get our precious prayer warriors on their knees for this beautiful new life growing inside of us!!!

We have a meeting with his dietitian on Thursday and one with the Keto dietitian on Friday.  We are hoping they can get together and come up with a good plan!  The other great news is that my seizures have decreased since becoming pregnant!  So, we are praising the Lord, not only for the miracle of life, but the miracle of reduced seizures!!

We'll post more later, but wanted to share the fun & exciting news with our prayer warriors!!!

1st day of appts at Mayo

Well, it started today...

I had my first appt. at the Mayo Clinic.  Before we left for the clinic, I called to see if they had received all of my files from Houston...NO!!

So, I put in a call to our precious friend in Houston that was sending them.  She faxed all of the paperwork to Mayo, but thought it would be safer to ship the images (DVD) to us and let us travel with them.  However, they haven't even arrived at our house yet (and she didn't tell us she was doing this).  They are not allowed to overnight anything from Memorial-Hermann in Houston and so even if they are able to make a second copy tonight, they can't actually send it overnight mail.  Someone would have to go pick it up and overnight it for us.  So, Mom is making trips to the house each day in hopes of the disk arriving so that she can overnight them to our doc.  Please pray that it arrives tomorrow, Tuesday.  There are so many scans, tests, etc., that the docs wouldn't want to repeat here (i.e., brain surgery)!!!

They give you an envelope, when you arrive, for all of your medical records.  We had 85+ pages from Houston and I brought another very large stack.  My doc appt. was at 2:30p.  However, this wasn't like most doc appts where they pick up your chart as they walk in the room and say, "so, what brings you in today?"  The doc actually took all of my records at around 2:15p and didn't come in to the room until after 3:15p.  He spent all of that time reviewing my records and creating his own chronology.

He did a basic neuro exam, asked a lot of questions, and told me the different areas he would refer me to while here...we didn't leave the room until 5pm!!!!  Yes, a doc spent that much time with a patient!

Another cool note about this doctor is that he and his wife are adoptive parents.  They have three birth kiddos.  However, they also have two beauties from China!!  We got to share our story about adoption from Korea and how we can't wait until they allow us to adopt (B's cancer & my epilepsy disqualify us now).  We also got to tell him about some friends that are in China right now picking up their little boy!!!  So, that was a special connection.

We start everything he is recommending bright and early tomorrow morning.  They want to do quite a few cardiovascular studies since one of the original diagnoses was POTS (Postural Orthostatic Tachycardia Syndrome).  They are also going to do quite a bit of blood work.  We have been asking about autoimmune components forever and he is going to run the appropriate tests for that, as well.

They are so organized here and print off a nice schedule for you.  However, the schedule has us here until JULY 15th!!!  So, our prayer is that we are able to shorten that...I only have food through Saturday morning.  We are basically able to show up for appts. that are scheduled days in advance and ask them to squeeze us in...Thus, this will be our goal tomorrow.  My first appt. is supposed to be an X-ray at 8:30a, then a tilt table test (back to the POTS) at 9a, and then labs at 10:20a.  However, we are going to try to get the labs taken care of at 7:30a and that will open up the 10a slot for more of the cardio tests that are scheduled for later in the day or later in the week.  The key is getting them all done in enough time that they can be read, discussed, etc., with enough time to still have a follow up with the docs before our flight leaves on Friday!

So, again prayers are greatly appreciated!!!!

By the way, Wed-Sat., I had 30 seizures.  Sun-today, I've had two.  They were both yesterday.  Not a single one today.  It's so crazy...kind of like your car making crazy noises until you arrive at the mechanic.  So, though I want these seizures miraculously gone and cured, you kind of hope you'll have one for the Neurologist to see.  I believe that I have my EEG on Wednesday.  So, if he's going to see one, that would be the time to have it.

Once we finished all of our appts., we made it back to the room and had dinner.  Then, we decided to go on a date!!!  Mayo has a beautiful campus.  So, B grabbed the wheelchair (physical activity is a big seizure trigger for me) and we went on a nice walk through the campus.

Here we are in front of the main clinic.

This is us with Drs. Mayo.

The original Mayo Medical School.

Finally, a picture of the best looking chauffeur, wheelchair pusher, caregiver, hubby, in the world!!!

Tomorrow should be a very busy day.  So, no idea when the posts will arrive.  However, we covet your prayers for:

• each and every step of the schedule
• each doctor, tech, etc., and their wisdom
• B's strength since he's having to do all of the walking and pushing
• that the right symptoms will occur at the right times for the right diagnosis
• that each office will be prepared for us
• that we will be a light and shine for the Lord and HE will receive ALL the glory!!

We love you all and are so grateful for all of the precious encouragement we've received from B's facebook page to all of the texts I have received...thank you!  It's awesome to know that we've got prayer warriors out there calling on HIS name for our sake.

God's Hand!!!

Well, day 1 is complete and I'll post an update on that soon.  However, just want you to know how we truly saw the Lord's hand in everything yesterday:

1.  We were late getting to my uncle's house (he was taking us to the airport & letting us park at his house).  He called and offered to just meet us at the airport and drive B's truck back to his house!  WOW!  That saved us considerable time so that we didn't miss our flight.

2.  When we got to our gate, the flight was delayed.  So, that gave us a few more minutes to collect ourselves.  Then, the flight attendant started getting upset about my cooler that he couldn't store it on the flight (this is something they are always precious about doing...).  Anyway, he said that if he stored that, we could take any of our carry-ons with us and they had to be checked all the way to Rochester.  Those contained items we couldn't part with either (i.e., meds, gram scale, computer with all of my meal plans, etc.) if it didn't get transferred or if the flight was delayed!

Another gentleman, on our flight, overheard this and allowed his carry-on to be checked so that we didn't have to worry about checking ours!!!!  What a blessing!

3. Since our flight from the Big D was so delayed, we only had about 15 minutes before the flight to Rochester left (this was the last flight out for the night).  So, we would be stuck in Chicago with all of our stuff waiting in Rochester.  So, B rushed to the gate to hold the plane and the sweet lady at the airport booked it with the wheelchair.  When we arrived, we found that the pilot was late and so the flight was delayed!!

4.  We arrived at our hotel (we had to go with the only hotel that we could find with a full kitchen since we have to prepare all of my meals) and it was scary...when I called the front desk to tell the lady what we found in the room, she agreed it was gross...we started calling around and found another hotel (more expensive, but they had a full kitchen).  The hotel we were at gave us a ride to the new hotel!  How sweet is that?  When we arrived at the new hotel, we found that it is attached to the Mayo Clinic.  So, B is able to just push me in the wheelchair over to the clinic!!!

So, just had to share a few ways that we saw the Lord at work yesterday!!

We'll post an update soon on today, but we've got to eat some dinner!

Thank you all for your prayers!!!

June 27th Nate Update

"We had some minor bumps this week, but all was corrected quickly and Nate actually started round two of chemo. He got out of the hospital this morning and has 4 days left in this cycle. July should be a very busy month. He will first drop, then once his counts recover the plan is to move forward with his stem cell harvest. I will spare you all the details, but Nate will be involved in the harvest, another bone marrow biopsy and bone scans in the coming weeks. Using all of the information gathered we will be making final decisions as to what route to go with the transplant. Jake will also be harvested in the coming weeks. We are in long meetings with Nate's doctors and will continue to be in deep discussions with them as the transplant in now in sight. We are praying for wisdom and guidance from God. You all have been with us on this long journey and held us up with prayer. We are thankful and ask that you continue to pray for our little guy and so many others who are suffering. Thank you!"

MAYO CLINIC DAY 1....The Journey Begins

Well, we finally made it. Four + long years and we have been able to take M's case to Rochester, MN. First, please pray with us that God will be glorified in all that we do while here. That all who we meet and come in contact with, that God would get credit from everything from our actions to words. Second, please pray that we will begin to find answers as early as tomorrow!!!!

So our journey is continuing, but with a new chapter...Already we have seen God's hands involved through our flight. We were late leaving the Big D and that meant we would be cutting it very close to even have a remote chance of catching our flight in Chicago that connect us to Rochester. Furthermore, our flight from Chicago was the last one to Rochester and as most of you know, we have to bring every little bit of M's food with us so having an overnight in Chicago isn't just something we can really do....

Anyway, all that to say we did get to Chicago and Praise the Lord, our connecting flight was delayed by about an hour (origninally we had about 15 mins to deplane and get across O'Hare to our other flight before it took off).

And, lastly we did get checked into our hotel and are looking forward to tomorrow's start at the Mayo Clinic. We will be sure to continue to post. FYI-our first appointment is tomorrow at 2 p.

MAYO

Bring out the best.

This is what we are hoping for...

Yes, I have had to add a lot of mayo to my daily menu to keep up with the nutritional therapy they have placed me on for my seizures. However, we leave this weekend for the Mayo Clinic in Minnesota!! Praise the Lord!

They are ranked at the top as far as neurology goes and so we are praying that they are able to help us uncover more and actually get to the bottom of all of this. We are also seeing an autonomic specialist, for the POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis. We saw a neurosurgeon a few weeks ago that said epilepsy can mimic POTS. So, we hope that they can put all of the pieces together. We are also trying to get in with an endocrinologist to see how my thyroid/auto-immune condition could play into everything.

We have a praise!! I went seven days last week without any seizures! That is the longest I've ever gone!!

However, in the last three days, I have had 25 seizures!!!!! We don't know what has changed. I basically have the same meals every single day, take the same meds, do the same things....so, we are hoping that they are able to help us uncover more...

We'll try to get better about updates while we are there...

We covet your prayers!!!!

From Connor's Mommy

Wednesday, June 23, 2010

I've been having a hard time sitting down at the computer to write this next entry. I've been trying for a week now. I'm trying so hard to write something uplifting and inspirational, but I just come up empty. My mind is so saturated with memories of Connor's last few weeks. A year ago tomorrow, we flew home from Guatemala for the last time. Painful memories. From May until July 10, every day leads me back to where we were a year ago. I guess it's just going to be this way for awhile. Instead of lingering on my difficult times, I thought I would leave you with a new song by Matthew West. It's called "Save a Place for Me." It says exactly what I feel.

Don't be mad if I cry
It just hurts so bad sometimes
'Cause everyday it's sinking in
And I have to say goodbye all over again You know I bet it feels good to have the weight of this world off your shoulders now I'm dreaming of the day when I'm finally there with you

Save a place for me
Save a place for me
I'll be there soon
I'll be there soon
Save a place for me
Save some grace for me
I'll be there soon
I'll be there soon

I have asked the question why
But I guess the answer's for another time So instead I'll pray with every tear And be thankful for the time I had you here And I wanna live my life just like you did Make the most of my time just like you did And I wanna make my home up in the sky Just like you did Oh, but until I get there Until I get there

Save a place for me!

On a different note, thanks to all our TeamConnor friends and supporters who made our CT Relay Run and our III Forks Golf tournament and Dinner a success. You guys are the BEST!

Always believing,
Joy

From Nate's Mommy

"We went to the doctor this morning and platelets are still down. So the wait continues and we are praying in a few more days Nate will be ready for his next round of chemo. We will be meeting very soon with the stem cell transplant team to discuss the next step for Nate. PLEASE pray for us to have wisdom as we move forward."

Two Nate Updates

June 10 at 7:59am

Wes provided an update last night on Nate. Nate had a biopsy yesterday and the early response from Dr's is that the left side of Nate's hip does not have cancer, the right side shows signs of cancer but the tumors are reducing in size. The full results will be released on Monday. This means that the cancer tumors are responding to the Chemo treatments that are taking place. Also, it was revealed yesterday that Jake (Nate's older brother) is a perfect match for Stem Cells which will mean there is a good supply of these cells for Nate’s treatement. This is not the same as a bone marrow transplant. For Stem Cell therapy, the cells have to come from either Nate himself or a matching donor. The Stem Cell treatment is still about a month away as Nate continues with Chemo. Once the tumors have reduced in size, they will begin this treatment.

June 11 at 9:40pm

Wes just called with good news about the pathology report. They just received the report back and the Dr's are saying that the Chemo treatment Nate has been receiving has been very effective and shows no Cancer. The last test that Nate had showed cancer in his legs and hips. That has now cleared up. Nate will continue this current Chemo treatment for another month and will then start the Stem Cell treatment. Let's all continue to pray for Nate, Wes, Jackie, Jake and Luke as they continue to walk through this valley asking God to give His sustaining help. "Surely God is my help; the Lord is the one who sustains me." Psalm 54:4