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!!!