From Nate's Mommy

Update on Nate - 12/29/2010 - from Jackie

"Nate's MRI results from last week appear to be stable compared to his last MRI, which is very good news. The sonogram for the stomach issues he has been having are inconclusive, so please pray his stomach issues resolve themselves. Each time he has gone to the clinic over the past few weeks it has been very difficult to draw his blood, which makes it very hard to make sure all his levels are good. The doctor recommended he get a port placed again so he doesn't have to get so many needle sticks and he can be monitored more closely. We came in yesterday morning for the port placement surgery, but because Nate's levels were not in check he was admitted for the night and given what he needed. Today his port was placed and he did very well in surgery. We should be going home tonight. We are hopeful that the last couple week's difficulties are behind us and Nate continues to move forward and get stronger everyday. Thank you for all the prayers! We did have a wonderful Christmas at home in between hospital stays. :)"

From Connor's Mommy

Wednesday, December 29, 2010

Christmas was wonderful, sharing time with family and friends.  Our children had a great time, though Connor was truly missed.   His big, enthusiastic, energetic personality had a way of lighting up a room, so we were reminded constantly of his absence.  In spite of this, we joyfully celebrated Jesus birthday and were grateful for God's cherished gift of our Saviour.

I realized this Christmas that I'm getting used to this new normal of no hospital trips, doctor visits, clinic visits, constant angst, chaos, fear and feelings of high adrenalin.  Over the last three weeks, three of my friends have been diagnosed with 3 different cancer diagnoses.  Now, I see my friends and their families scrambling and readjusting to their new normal.  Knowing some of what lies ahead for them, my heart aches for them.  I cry out to God to help them all through this.  I wish there were some way to take all of this away for them.  It's unbelievable how one's life can change in an instant.  One morning, you're healthy and the next morning, you are fighting for your life.

All of this has brought to the surface memories of Connor's battle with cancer.  There is so much suffering in this world.  Some people would use this as an excuse to believe that a good God does not exist.  We had a debate at our school a few weeks ago - an atheist versus a biblical scholar.  Does a good God exist?  The atheist has terminal cancer and he believes that his diagnosis is just more proof that there is not a good God.  I wish I could have 5 minutes alone with him.  His view is so skewed; it is so temporary.  We all face death.  Our bodies will one day give out, some sooner than others.  So, I'm not sure why he's mad at God for the cycle of life. Why would we stay angry at God for not providing us a temporary solution to our physical problems, when He has provided us an eternal solution for our spiritual lives?

I think we spend so much time looking at our lives through a physical perspective.  Teilhard De Chardin said "We are not human beings having a spiritual experience, but spiritual beings having a human experience."  Our home here on earth is just an environment in which God is developing our spiritual life.  My friend, Brent, who was diagnosed with cancer about 2 weeks ago, looks at his cancer differently than the atheist with cancer does.  He shares with everyone that he is not afraid.  God has given him a peace about this, and he knows where he's headed.  His life is not terminal; it's eternal.  What a different perspective.

This holiday season, my friends have weighed heavily on my heart.  But their situation has brought with it a fresh gratitude to God for His salvation.  It has made this Christmas season that much richer, that much more appreciated.  The knowledge that Jesus birthday was just the beginning of God's grace being poured out onto all our lives brings joy to my heart in the midst of all this.  Because of this precious gift of salvation, I can still feel joy and peace, even when I miss my sweet Connor on Christmas morning.  So, I say thank you God for Christmas and what it means to me!  And, hopefully, what it means to you!

"Therefore, we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen.  For what is seen is temporary, but what is unseen is eternal.

  II Corinthians 4:16-18

Always believing,

Joy Cruse

Nate Update from his Mommy

Update on Nate - 12/23/2010 - from Jackie

"We are still waiting for the final read of the MRI. Nate's MRIs have to be compared to previous ones, because of the amount of treatment and cancer his brain has experienced there is always something that looks abnormal. All that being said the preliminary read doesn't show any signs of new tumor, which is great news. There is something still going on with Nate that isn't normal, but the doctors are not exactly sure what is going on. His meds have been adjusted and some new ones added on. We are praying this is just a minor bump in the road and Nate is back on track very soon. Thank you for all the emails, texts and prayers for our little man. We are thankful to be home for Christmas, and wish you all a blessed Christmas. Love, Jackie"

Update on Nate - 12/21/2010 - from Wes

"Nate was admitted to Cooks Children's Hospital in Ft Worth today after a visit with the oncologist here who is collaborating with Nate's doctors in Los Angeles. Nate has been experiencing weakness, stomach pains, bone pain, throwing up randomly, and shaking quite a bit all happening in the last couple of days and becoming worse. The Dr here decided to admit him, run some labs, watch him for a few days and perform an MRI on him in the morning (Wednesday) to check for cancer. Of course we are concerned right now as we sit here in the hospital, but we know God has seen Nate and our family through so much and we have no reason to doubt HIM now. Please pray for a clear MRI and for these behaviors to go away and for him to return back to beating all of this. We thank and love you."

Nate Update from His Daddy

Prayer Request for Nate - 12/20/2010 - from Wes

"Please pray for Nate. He has been showing some unusual signs lately. We have an appointment in the morning to check into and see what it could be. Please pray all is ok. Thanks. We know God is with us."

Update on Nate - 12/16/2010 - from Jackie (his Mommy)

"Many people have been asking and wondering how things are going since we have been home. We have been very busy trying to keep up with work, Nate's clinic appointments, keeping the house very clean for Nate and just living normal life. We are so blessed and thankful for this time of somewhat a normal routine. Nate has been doing well overall since he has been out of the hospital. He is 86 days post-transplant and the doctors continue to be pleased with his progress. He is still regaining his strength and stamina. He has a long recovery ahead of him and needs prayers as his little body continues to heal. It is be many years before we know the true extent of the long term side effects of Nate's treatment. Jake and Luke are both doing well and have adjusted to being back at school. All three boys are looking forward to Christmas! They have decorated the tree and been busy making cookies and treats with Sugar Momma. We are so humbled and thankful as we watch our boys play and spend time together. We know what a miracle Nate is, and are thankful for God's mercy on us. We hope you and your family have a Merry Christmas and enjoy the true meaning of the holiday season."

Pictures

I'm sure I could come up with a more creative title...sorry, the marketing major in me must have disappeared with the seizures...

Anyway, we have a precious friend, Haley, that is a very talented photographer.  Go check out her site.  When my surgery was complete, she offered to do four sessions for us...basically to track the progress, healing, etc.  We thought we would knock it out by doing one session per quarter and have a year worth of pics.  Well, not so much!  We started in January 2009 and just did our last session last week!  However, that allowed us to truly see big changes!!!

So, we started in February 2009.  I can't find any of those pics online.  However, this is a pic from around that time.  So, you can see how much hair we both had about two months after the surgery!

Okay, I just found the post HERE from January 2009.

Then, she did more pics in September 2009.

This was the third round of pics that we did in May 2010.  This could be TMI, but let's just say that we didn't know we were pregnant, but she was being formed while these pics were being taken...how's that?  Sorry, if I'm sharing too much!!

We did our final round of pics with Haley last week.  We were 33 weeks prego in these pics. She put some belly shots in there, too.

So, we now have about two years worth of changes and growth in our family captured!!!  Thank you, Haley!!!  We always have so much fun with you!

From Connor's Mommy

Thursday, December 9, 2010

So many questions arise as I wrestle with God.  Suffering causes us all to look deeper at our own beliefs about God and what the Bible says.  I've always loved the verse "And we know that in all things God 
works for the good of those who love him, who have been called according to His purpose" - Romans 8:28.  This verse has always given me comfort, knowing that God was going to work good in my life from 
all things, even my suffering.  Since Connor's death, I've struggled with this verse.  I find myself doubting all the hope I've placed in it.

Don't get me wrong.  I know that there have been many "good" things that have come from Connor's brief and courageous life.  I still receive e-mails and letters from people telling me how he has impacted 
them.  I know that he is a great example to us all of bravery, faith, and joy in the midst of sorrow.  He is my hero.  He has definitely done a great work for God's Kingdom.

I have to be honest here.  When I read this verse for the first 39 years of my life, the words "God would work good in all things" focused on a more personal level for me.  Meaning, I understood it to be that God was working out everything to be good FOR ME!  Blessings 
were in store for ME!  If I love the Lord and am called according to His purpose, Blessings are certainly ahead.  Surely, he will answer my prayers and fix my problems.  It's really the focus of the "name it and claim it" philosophy of some churches today.  At a closer examination of this verse, I understand that this "good" that is being worked out, is for God's Glory.  This "good" will be for His Kingdom, and that doesn't always line up with my own expectations and wishes.

For some, this knowledge may not be so difficult to swallow.  But, for those of us who have been disappointed by God's choices for our lives, it can be very disheartening.  It leaves me sometimes feeling like my wishes and desires aren't so important.  I have always wanted to 
further God's Kingdom and glorify Him in all my actions, but I never expected that to come with such a high cost - MY SON.

I've also loved the bible verse that said "He will give you the desires of your heart."  Doesn't that sound marvelous?  Well, it doesn't seem to be true, because I did not get the desire of my heart.  Connor is no longer here with me.  What about that family of four children that I always wanted?  It still hurts to have a child missing in the back seat of my car and around our dinner table. Last week, I looked up the whole verse.  It's Psalm 37:4.  "Delight yourself in the Lord and He will give you the desires of your heart."  AAAhhh.  Now, the meaning is
clearer.  If God is the desire of our heart, then yes, God will give us more of Him.  That's what He meant by the desires of our heart.  He wants us to draw nearer to Him.  He wants our desire to be just Him.

So, now, I'm faced with this knowledge that it's not all about me.  Wow!  Shocker.  As I look at the life of Paul, he is a great example of putting his earthly, selfish desires aside and only wanting God's purposes to be lived out through his life.  Christ was the source of Paul's continual joy, for Paul's life found meaning in Christ.  I admit that I'm not always there.  I do know that every day, I constantly have to bend my knee to His Will and lay my selfish desires at His feet.   This is the battle that wars within me.  I suspect that others have fought in this same battle.  My prayer (like Paul's prayer) for us all is that "whatever was to my profit, I now consider loss for the sake of Christ.  What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things.  I consider them rubbish, that I may gain Christ and be found in Him!"

Always believing,
Joy Cruse

December 8th

Yes, I'm a bit late since the calendar now says it's December 9th!  However, I couldn't let this opportunity sneak away!

December 8th, 2010, is the four year anniversary of B being cancer FREE!!  Are you praising the Lord with me?  Come on...let's jump up and down and shout for joy!!!

Praise be to the ONE who healed my hubby!!!  Praise HIM!!!  Praise HIM!!!!  Praise HIM!!!!!

Thanksgiving!!

We spent Thanksgiving this year at my uncle's house in N. Richland Hills!  It was so wonderful to get good time with the family!!!  The problem is that I didn't get any good pics of the family.

My cousin did get a couple of pics of B & Me so that B's Mommy can see:

a.)  my belly

b.) the new, cute sweater that she bought for me.

 You can tell that we were ready to watch our Ags beat t.u.!!!  We both had our maroon ready to go... 

 In these pics, I am at 31 wks.  So, only nine weeks to go until we get to meet our little sweetie pie!!! ________________________________
One of my cousins is a punter for Kansas State!  KSU was playing UNT.  So, he got tickets for all of us and we got to go watch them play!!  Sorry it's blurry, but there he is....

Here's the cutie after the game!!  It was so good to see him!!

 Here he is.  On the left is my cousin, M.

Posing with B & me.  I couldn't bring myself to wear anything KState related, but put on a little purple to support him!!!

 Final pic, posing with my Momma....

That is the jist of our Thanksgiving celebrations!!  Hope you all had a wonderful Thanksgiving, as well.

What are you thankful for...?

FREE Nollie Covers

For any of you that are about to purchase a new car seat or want a new cover for yours...

You can get one for FREE!!

Click on this link and they will tell you how.

The basics are:

• They are looking for specific new car seats that they want to create covers for...
• If you have one of them, you send the cover & parts to them.
• They create a new cover for you and send it all back to you for FREE

How cool is that?

Also, they are having a huge sale TODAY & TOMORROW ONLY!!

Click on this link to see their 40% off Sale!!

From Nate's Mommy

Subject: Update on Nate - 11/19/2010 - from Jackie

"We have been home officially one week. We are adjusting to regular life or what is going to be regular for us. Nate is doing very well. We met the doctor that will care for him yesterday and we are very pleased with her willingness to work with his doctors in LA. All his lab results look good! Jake and Luke were very excited to start back to school this week, and I returned to work. We were so blessed to come home to a very clean and organized house. I was talking to a friend yesterday morning about our journey and as I walked away and thought about our convesation I was reminded that we in no way have done this alone. God has placed an amazing group of people in our lives that have not only stood by us, but have carried us over the last two years. We are surrounded by family, friends, church family, co-workers, neighbors and strangers who have been the hands of Jesus to our family. We sincerely thank each of you who have lifted Nate and our family up in prayer. We wish you all a very Happy Thanksgiving and pray you are blessed. Love, Jackie"

Rockstar Prayer Warriors

UPDATE:  Our sweet puppy, Hank, who also has seizures, started seizing this morning.  He has gone at least six months without a seizure and we've been able to reduce his meds.  He's been acting weird the last few days, but then he started seizing this morning.  The seizure wouldn't stop.  Then, while holding him, I started having a seizure, too...we were quite a pair!

B is over two hours away today and I can't drive.  So, he put a call in to our vet.  Our vet is precious and actually came over to the house and picked Hank up...who said docs don't make house calls anymore?  Hank appeared to be in status because the seizure didn't stop after five plus minutes.  So, Lord willing, they can get it under control.  Thanks for praying.

****************************************************

ORIGINAL POST:  The power of your prayers are amazing.  Each time that I have come to you asking for prayers, it is pretty rapid that we see the results.  So, I'm not going to wait any longer to start begging again...

The seizures have come back and they are going crazy.  When I asked at the beginning of the month, you all jumped in and the response was almost immediate.  It actually turned November into my best month EVER!!!  That was until yesterday happened...I had five seizures yesterday (and some auras) and just felt awful.  I've already had seizures and auras this morning and it's not even 9am.  So, I'm coming to you begging you to ask HIM to heal these...take them away...

Thank you all for being such faithful, faithful prayer warriors!!!!  I know the Lord must love hearing the sounds of your voices!!

Car Seat Covers

I've got a fun deal for y'all!!!

We just purchased the cover for our little girl's car seat!!!  We found it at www.buynolliecovers.com.
The lady that runs the company is precious!!  She decided to give each of YOU a great deal.

Here it is, in her words:


...if your girlfriends decide that they'd like to buy a NollieCover for themselves...have them write 'fox' in the discount code box - and we'll give them a free belly pad and seatbelt covers...and if we see 10 fox orders coming in, you'll get a free NollieCover of your choice.

So, how much fun is that?  You get a free belly pad and seatbelt covers if you put "fox" in the discount code box!  If enough of you do it, that will in turn bless us!!!

So, what are you waiting for, go get an adorable car seat, toddler seat, or stroller cover!!  You should also hurry because they are having their Fall Sale and it ends this weekend!!!

Let me know if you have any questions!!  Also, let me know if you place an order!!!

Update on Nate - 11/10/10

Today is a great day! Praise God for the help He has given to Nate and the Oxfords throughout this time. He has been a sustaining help and comfort all the way and has been faithful to hear the prayers of so many lifted up for Nate. Today, Nate received the news from the Dr that he is released and ready to go home. They are actually travelling cross country right now, heading back to Rockwall. Please pray for their safety as they travel and for Nate's comfort as well. He has to take meds regularly and there will be a checklist of things for him to take all along the journey. Nate will continue to be monitored by Dr's in the DFW area and will make occasional trips back to LA for follow up exams when needed. The days ahead will be very difficult for Nate as his immune system is still developing. Because of this, Nate & family CANNOT have any visitors at all for the next 150 days at least. They are not permitted to have any visits or meals for now, as a protection in the home from illnesses. Nate, Wes, Jackie, Jake and Luke are all so thankful for the many prayers and help that so many of you have given for them. Please continue your prayers for Nate in the coming weeks that his body will continue to get stronger, that his body will continue to accept the transplant and that he will continue in his health. Many of you have asked how you can help. Because of the home cleaning schedule needed at this time some of the things that would be helpful now are Clorox Wipes, Tide with Bleach (Tide brand ONLY) or Wal-Mart gift cards. Please communicate with me via facebook if you would like to assist with some of these items and we'll make arrangements to meet and get these items delivered to them. - Thanks, Scott Brazell

Exciting News from Nate's Mommy

This is from last night.  Sorry I'm posting it late.

"Today is a GREAT day for our family. Nate is being released from the hospital. We will go to the Ronald McDonald House and he will be back for doctor's appointments this week and hopefully he will be released to make the trip home next weekend. He is doing remarkable and is so excited to leave. I went to pick up his home meds yesterday from the pharmacy and as I picked up all 16! I was reminded that he is still in the early stages after transplant. His new immune system is still forming and he will be under strict precautions for many months. These meds are to help protect him from infection until his system is fully working. We are so thankful to be taking our little guy home. What an amazing and tough journey this has been. It has been the prayers of so many that have carried us when we didn't have the strength to pray for ourselves or didn't know what to pray. Today we rejoice with you all and look forward to sending an update that says we are headed to Texas very soon!
Please continue praying for the kids who are still here! This hospital and hospitals across the country are full of sick kids. The families we know who have kids in Heaven are never far from our hearts and minds. If you have healthy children remember it is a gift not a guarantee. Cherish every day, and love those babies! Love, Jackie"

From Nate's Mommy

"Nate is doing very well and had a great time dressing up as IronMan and playing with Jake and Luke over the weekend. He is scheduled to have his central line removed tomorrow along with a lumbar puncture and bone marrow biopsy in the morning. If all goes as planned he should be released from the hospital on Sunday. He will go to the Ronald McDonald House when released. Things are looking very hopeful that he will get to return to Texas earlier than expected. We don't know an exact date yet, but we are so excited at the thought of returning home. Nate is still in the early stages and he has many precautions and rules that we have to follow for many months to protect him while his new immune system is forming. I feel that he will thrive and make lots of physical progress once he gets back to the comfort of his own home. I will send another update as we get more information. Thank you for your prayers! Love, Jackie"

From Connor's Mommy

Tuesday, November 2, 2010

Suffering teaches us that God's ways are above our ways.  We often struggle like Job did with the injustice and the mystery of our sufferings.  We search for a reason why this should happen?  I know that there were times when I questioned God's plan.  There surely is a better way.  Job questioned God's Sovereignty, too.

"Even today, my complaint is bitter; his hand is heavy in spite of my groaning.
If only I knew where to find him; if only I could go to his dwelling!
I would state my case before him and fill my mouth with arguments.
I would find out what he would answer me, and consider what he would say.
My feet have closely followed his steps; I have kept to his way without turning aside.

I have not departed from the commands of his lips; I have treasured the words of his mouth more than my daily bread.
But he stands alone, and who can oppose him?  He does whatever he pleases."

Job 23: 2-5, 11-13

I understand Job's frustration.  Like Job, we often feel that if we live a life that follows after Christ, we are justified in getting the right reward for our efforts.  It makes no sense that others seem to be rewarded for unrighteous behavior, while righteous men like Job don't get their prayers answered.  It seems so unfair.  Often, I would cry out to God in my frustration.  "Did I not glorify you in my trials?  Did I not exhibit faith in you at all times?"  Doesn't it make sense that I should be rewarded for my efforts?  While I see other families who are battling childhood cancer that make no mention of God, His strength or saving grace, continue to hold their surviving children in their arms.  It makes no sense and doesn't seem fair.  Have you ever experienced these same emotions?

God's response to Job hits home with me.

"Who is this that darkens counsel by words without knowledge?

Now gird up your loins like a man and I will ask you, and you instruct Me!

Where were you when I laid the earth's foundation?  Tell me, if you understand.

Who marked off it dimensions?  Surely you know!

Who stretched a measuring line across it?

On what were it's footings set, or who laid its cornerstone- While the morning stars sang together and all the angels shouted for joy?"

God's response reminds me of a parent's response to a child.  "Because I said so."  "Because I know best."  "I brought you into this world and I can take you out." -Bill Cosby.  I can see that God doesn't have to defend his actions to me.  He's the one and only true God, who put this world into motion.  He's my creator and my Lord.  I owe Him my total allegiance and Love, not my questions and accusations.

These words from Addison Road give us a glimpse of God's awesomeness and His Holiness.

I guess I thought that I had figured You out I knew all the stories and I learned to talk about How You were mighty to save Those were only empty words on a page Then I caught a glimpse of who You might be The slightest hint of You brought me down to my knees

(CHORUS)

What do I know of You

Who spoke me into motion?

Where have I even stood

But the shore along Your ocean?

Are You fire? Are You fury?

Are You sacred? Are You beautiful?

What do I know? What do I know of Holy?

(CHORUS 2)

What do I know of Holy?

What do I know of wounds that will heal my shame?

And a God who gave life "its" name?

What do I know of Holy?

Of the One who the angels praise?

All creation knows Your name

On earth and heaven above

What do I know of this love?

Always believing,

Joy Cruse

Yesterday was a busy & fun day...


I had a bunch of errands to run.  So, B dropped me off where I needed to be for those.  Then, we had a doc appt.

We got to see our sweet girl again!!

 Peek-a-boo!!  Just in time for Halloween!!

 B says she's wearing her skeleton costume!

For those of you, like me, that have no idea what I'm looking at on the ultrasound screen, this is her face (sideways-eyes to the left, mouth toward the middle of the screen)!

She is doing very well.  The doc said that she weighs 2lbs 2oz.  That is just so hard for me to believe!  Our little girl is 27 weeks (almost seven months), only 13 wks to go...doc says she is measuring right on schedule.

Then, we went and picked up some of the fabric for her room!  A precious friend that I grew up with is making her bumper, crib skirt, etc.  I need to find out if I can post her info on here for those of you that may want to be blessed by her talent, as well!!

After dinner, we went to the RHS football game!  Boy was it cold out last night.  We are guilty of leaving a little early, but the boys won!!  We watched the Stingerettes and then watched the boys come back and score.  Then, we had to go...it was just too cold...Brrrrr!!  

Here we are before halftime with Congressman Hall.  Have you voted yet?

Finally, we won't get to see many Trick-or-Treaters tomorrow night.  B's b-day is next weekend.  For his big day, Mom got us tickets to.....

THE WORLD SERIES!!!!!!

We will be on the 1st base side, foul line, about six sections down from the dugout!!!  We are so excited!!  Go Rangers!!!

Update from Nate's Mommy

"Nate is now 36 days post transplant. He had an MRI and PET-Scan this week, both tests showed good results and no new developments. The doctors are very pleased with the results so far. He is getting stronger everyday and I have decided Jake and Luke are the best medicine for him. He gets so motivated when they are around and has shown improvement after just spending a few hours visiting with his brothers this week. He is now almost off of all IV medication and most of his meds are being taken orally. This makes him one step closer to being released. He is taking in more calories each day, but isn't where he needs to be yet. Thank you for your continued prayers. We are so thankful that Nate is doing so well. Please keep praying for his full recovery and for all the kiddos who are fighting this battle. Much Love, Jackie"

Bellies & Puppies!

I must thank each of you that takes the time to pray for us!!  After I posted last week, the seizures backed off a bit.  In the first 19 days of the month, I only had 10 seizures.  This is the best EVER!!!!!  Praise the LORD!!  In the next three days, I had 15 seizures.  It was so yucky!  However, in the last four days, I've only had two.  I'm still having auras.  Those need to disappear, as well.  They just don't knock me out as badly as the seizures do, though.  So, please keep those prayers coming and thank you!! 

Now, on to the little girl!!!

I always thought I would take belly shots throughout a pregnancy.  I'm just not there, though.  I can't quite bring myself to do it.   However, when you have family in different states and they are all requesting pics, somethings got to give...

So, this is my best effort at belly pics.  K & I grew up together and she is about a month ahead of me.  This was at her baby shower.  In this pic, I'm about six months prego...

It's hard to believe that we are getting so close to our sweet little girl arriving.  We only have about 13 weeks until her due date!  WOW!!!

Since I know that my belly isn't the last image you want in your mind, here are some much cuter pictures to put a smile on your face.

Anyone for a belly rub?!?!?!

Time For an Update

Sorry that I have not updated.  You can see that I'm just not that great at staying on top of the updates.

October has been one of my best months ever and this last week was wonderful.  However, something went crazy on Tuesday.  The seizures started coming back and Wednesday they were full speed ahead (I had 4)....it's so frustrating.  I've already had three today before noon.

I'm not real sure as to what the trigger would be...I have been completely off my seizure meds for over two months!!!  I've had fewer seizures on no meds and doing the Ketogenic Dietary Therapy (and being pregnant with our sweet little girl), than I had on high dose meds or anywhere in between.  So, we are so grateful that the Lord allowed us to find this nutritional approach.

We are continuing to pray for wisdom that we are able to see what the triggers could be...

Thank you all for being such incredible prayer warriors!  We love you!

Baby Stuff

Okay, more questions for the Mommy experts out there:

Do I really need to wash all of her clothes in something like Dreft?  Or, can I use our regular detergent?

 


Pacifiers?  Bottles?  Nipples?  etc.?  What have you found to be the best?  What do you look for in each?

 

Thank you!!  We tried registering the other day and it was so overwhelming!  So, I need the advice of the experienced professionals out there!!

Thank you!

Update from Nate's Mommy

"Nate is three weeks post transplant this week and he continues to do well. He is getting a little stronger everyday. The test they did last week showed that Nate's bone marrow is now 100% Jake's, which was the goal. We were thrilled by this news. He still is not eating or drinking so he is getting all his nutrition by IV. We are really trying to encourage him to start taking things by mouth as this is important for his recovery and release. We are encouraged by his daily improvement and pray this transplant was the cure for Nate and for others in the future. Thank you for the continued prayers and love for our family. Much Love, Jackie"

From Connor's Mommy

Monday, October 11, 2010

Suffering, the great teacher, has also taught me to try to look at the situation through a heavenly perspective.  It's only normal that we should look at everything through earthly eyes, but there is so much more to be seen.  We often do not recognize God's bigger picture or plan.  As we were studying Mark 8 :31- 33 in Sunday School, this became so apparent.
 
"Jesus began to teach the disciples that the Son of Man must suffer many things and be rejected by the elders, chief priests and teachers of the law, and that he must be killed and after three days rise again.  He spoke plainly about this and Peter took him aside and began to rebuke him.  But when Jesus turned and looked at his disciples, he rebuked Peter. 'Get behind me, Satan! You do not have in mind the things of God, but the things of men.'"
 
Pretty strong words.  I was trying to think of the words that Peter may have said to Jesus, like...This is your great plan?  You came to earth to die?  Why don't you just take over your rightful authority on the throne?  You are the King of Kings, so use your power to rule here on earth.  There has got to be a better way. Why does there have to be a cross?
 
I have to admit that I've asked some of those questions to God 
myself.  I sensed the same frustration in Peter that I have felt.  
This was your great plan for Connor?  There's not a better way?  
Wouldn't Connor serve you better if he had lived?  I've offered many different scenarios that seem a lot better than this one.  But, I can just hear God answer  me, "You do not have in mind the things of God, but the things of men."
 
We often think that Victory has to be won through strength instead of weakness, military might rather than selfless surrender, self promotion instead of sacrificial submission and humility.  I'm sure that was how Peter saw it, but I'm sure his perspective changed when he and John arrived at the empty tomb. I wonder if that was the AH HAH moment for Peter.  Or was it when Jesus appeared to the disciples that same night?
 
When I think of Connor, I wonder if I will have that same clarity this side of Heaven like Peter did, or will the clarity come once I've entered the gates of Heaven.  I pray that whether answers come this side of Heaven or not, I will continue to cling to my faith and hope in Jesus Christ.  Like Jesus said in John 21:29, "Because you have seen me, you have believed; blessed are those who have not seen and yet have believed."  I pray that I will focus on the things of God and not the things of man.
 
"Since Jesus went through everything you're going through and more, learn to think like him.  Think of your sufferings as a weaning from that old sinful habit of always expecting to get your own way.  Then you'll be able to live out your days free to pursue what God wants instead of being tyrannized by what you want."
I Peter 4:1-2 The Message
 
Always believing,
Joy Cruse

From Nate's Mommy

"Nate has had a good week. His counts are continuing to trend upward, which is a good sign of recovery. The next big step is for him to start eating and drinking again. He is only taking sips at this point. His legs are very tight and weak because he has been in bed for several weeks and has gotten such intense treatment. Our prayer is for him to continue to get stronger everyday and make progress in these areas. Of course there is always the concern for infections and complications from the transplant, but he seems to be doing really well overall. We continue to be amazed and inspired by all the support for our family and Nate. Much Love, Jackie"

Nate Update

Thanks to everyone for the continued prayers for Nate. The doctors treating Nate have been very pleased with his progress following the stem cell treatment. Tomorrow Nate will undergo a test to make sure that the cells have grafted like they are supposed to. His counts continue to improve daily and symptoms continue to improve as well. Please continue your prayers for Nate that his improvement would continue and the tests would go well.

Nate Update

9/29 Update from his Mom:

"The doctors have decided to give Nate some meds in his line that would possibly get rid of the infection, so he can keep his current line. He really needs to have a central line to get all his meds, it would take many IVs for him to get everything he needs. He will have another echocardiogram on Thursday morning. They feel confident the antibiotics he is on currently are addressing the infection. We are praying that the test tomorrow shows the infection gone, as well as Nate's heart in good shape. The doctors increased his pain meds and he has really felt some relief. He is sleeping a lot, but we are very thankful he isn't hurting so much. Thank you for your prayers!!!

Nate is not the only one, please remember all these kiddos who are so sick and the doctors and nurses who care for them daily."

9/30 Update from his Mom:
"The echocardiogram showed that the growth on the end of Nate's line is gone. We are very happy that he will be able to keep the line. He also has a white count starting. It is very low, and he is still very sick, but I am celebrating each small victory!!! He seems to be on track at this point. Today is a good day!!!"

Nate Update from His Daddy

This update is from Tuesday:

"Please pray for Nate. After having an echocardiogram today, it has been determined that Nate has an infection at the end of the central line that goes into his heart and it is believed that he now has a heart infection. His heart rate and blood pressure are both high. This is very frustrating, please pray that the infection is cleared without any heart damage. We know God hears our prayers and we thank you for continuing to pray. We will know more in the morning after speaking to the oncologist, infectious disease, and cardiology. He also spiked a fever today and his mouth is very nasty with lesions in it all over.~ Wes"

Nate Updates

9/22-from his Mommy:

"Jake's surgery went as planned for the bone marrow harvest. Jake is an amazing little man. He was laughing with Wes and Luke while waiting this morning. He was so calm and visited with the doctors as they put him to sleep for the procedure. We and I are so proud of him and the strength God has given him. He has been throwing up from the meds. He will spend the night in the hospital just for routine observation and pain control. Nate is currently getting the transplant. It is about a four hour process to infuse the new marrow. He has been dealing with the effects of the chemo and in the coming days he will be dealing with the side effects of transplant as well. The doctors have let us know that the week or two after transplant are usually very difficult days. Today has been a very emotional day as we have traveled back and forth between Jake and Nate's hospital rooms, but to quote Nate's doctor,"today is a blessed day." So many days we weren't sure if we would make it to this point, and although it is not over we rejoice for the opportunity to continue this journey. Love to you all!!!!" 

9/23-from his Daddy:
"Jake is out of hospital, a little sore, but doing great. Nate is suffering from lots of side effects from the chemo and the transplant (we knew it would be rough). His blood pressure is running high, he has off and on fevers, he has another infection in his line, he itches all over, his skin is bright red with dark red and white splotches all over, he twitches terribly and shakes in his sleep which is hard for him to do, his rear and mouth have sores all over them, and he has severe mucositis which is a crazy condition where from your throat to the inside of your intestines produce extra mucus because you have no immune system and it causes you to literally poop bright green liquid snot and blood frequently and makes it very difficult to talk, on top of all that he can't eat because he is nauseous. Even with all of that going on he has a good attitude and laughed at a clown who performed through the shield for the room and got down and did his physical therapy and played very good today. Nate wants to make it, I have never witnessed anyone with such a will to live. God is great and has done so much in our lives, we are so grateful. Thank you for all of your support and prayers. Please continue, we know that is what gets us through each day. Nate will understand all of this one day and will know that so many people took the time to love him, he already knows to some extent, but we will always make sure that he knows that many have loved him and much love should be shown by him to his LORD and to the world. Thanks-Wes."

Nate Update from Tuesday

"Nate update today was the big day for transplant. Thanks for all the prayers and to God for making this possible. Please pray for both Nate and Jake. Big brother helping little brother forever. Jake came out of two hour surgery nauseous and wore out and has been throwing up and asleep most of today. Nate has been getting the five hour transplant since 1pm Pacific time. He is steady and they have lots of people gathered around him. So far all is okay. The next 14 days are critical to make sure his body accepts Jake's cells and starts to produce his own. Until then we have been warned to see Nate go through lots of crazy side effects. Thanks for the continued prayers. I will keep all informed."

From Connor's Mommy

 

Tuesday, September 21, 2010

Suffering.  I've come to the conclusion that suffering is the hardest teacher there is.  Suffering teaches difficult lessons that are hard to understand; hard to grasp.  Yet, once you've learned them, they are not easy to forget - they are forever cemented in your brain, and forever imprinted on your heart.
 
I've learned to deal with what I felt was broken promises.  After Connor's second diagnosis, a friend gave me a book on Psalm 91.  This Psalm has many promises of God's protection.  It is beautiful.  I would read it every night over Connor while he was sleeping, hoping these words would stir God into action.
 
"He will rescue you from every trap and protect you from deadly disease.
He will cover you with his feathers.  He will shelter you with his wings.
His faithful promises are your armor and protection...
If you make the Lord your refuge, if you make the Most High your shelter, no evil will conquer you; no plague come near your home.
For he will order his angels to protect you wherever you go.
They will hold you up with their hands so you wont even hurt your foot on a stone...
The Lord says, 'I will rescue those who love me.  
I will protect those who trust in my name.'"    vs. 3-4, 9, 12
 
After Connor passed away, I couldn't even read these words.  To me, it represented broken promises.  How could I reconcile Connor's death with these beautiful promises?  I struggled with this for a long time, and my teacher, Suffering, has showed me the real truth behind these verses.  There is something more important to God than protecting us from physical harm.  His agenda is Kingdom advancement.  Nancy Guthrie explains it well.
 
"While he cares deeply about us and the physical pain we experience, he cares far more about our spiritual conditions.  He knows that these bodies of ours are wearing out and will someday die.  It's our souls that he is most concerned about.  Jesus knows we have a hard time grasping this more significant spiritual reality.  And, so in our everyday requests for safe travel and physical health, and in our more desperate prayers for healing or deliverance amid great difficulties, we try to apply to or bodies God's promises of protection that were intended for our souls.  And when we do, we're often left disappointed.  Until we value the eternal life of our souls more than the temporary life of our earthly bodies, we will continue to feel disappointed with God.  God has not promised wholesale physical deliverance in this life for those who place their faith in him.  But he has promised to protect our souls for eternity.  And really that is so much bigger, so much better."  
 
I admit that although I agree with everything Nancy said, I still struggle to remember it sometimes.  The pain of losing Connor often takes my attention away from the truth.  I'm wondering how many other people have been disappointed by these seemingly "broken promises", too.   If you have felt this same disappointment, remember Jesus on the cross.  When I think of his sacrifice, I can't be angry with God for not rescuing Connor the way I wanted him to - ways that are limited by my earthly perspective.  I can't continue to believe that His promises of protection weren't kept.  Everyday, I'm reminded that those promises weren't meant to protect me or Connor from anything that threatens our comfortable existence in this life.  They were meant to rescue our souls for eternity.
 
Always believing,
Joy Cruse

More Nate Updates

9/16 Update from Wes:

"update on Nate, today he woke up and falls to the left when he tries to sit up or walk in his walker, hopefully this is temporary and a short term side effect of chemo and nothing more, thanks for the continued prayers-Wes"

9/18 Update from Jackie:

"Nate has one more day of chemo. He doesn't seem to be falling or leaning as much today. He had a ct scan last night just to check for anything that could be causing this and it looked fine. It is thought at this point the falling and weakness are related to the chemo and all the meds he is getting right now. He is weaker, but overall is doing well.

Thank you for praying for our sweet friend Ryan. He passed away on Tuesday. Please pray for his family and for God to comfort them during this sad time. He was a bright light in this world and he will be missed deeply by all who had the privilege to know him."

Need the Prayers!!

We're not real sure as to what has happened, but the seizures have gone crazy.  The first 14 days of the month, I had nineteen seizures total (average of 1.4/day).  In the last three days, I have had sixteen (average of 5.3/day)!!!  Seven of them were yesterday and I've already had six today.  I just don't get it.

I am worn out...Please just be in prayer that we can either determine the cause OR that they will miraculously disappear and stay gone forever!!!!!  Please, LORD!!!

Thank you, prayer warriors!!!

Yesterday's Nate Update from his Mom

This is from Wednesday.  Sorry that I am late posting it:

"Nate is completing day 3 of his chemo. He is doing very well overall. Please continue to pray as he is now 6 days from transplant. Jake seems to feel very confident and calm about his role as the donor. I am asking God to continue to give him this amazing peace.

I also wanted to ask that you all pray for one of Nate's little friends in Dallas, who is not doing very well right now. His is name is Ryan. I know we have prayed for him before, please lift him and his family up in prayer. One more request, a young man who found out yesterday he has brain cancer, please lift up Chris Jarvis and his family. Thank you all so much!!!!!!"

An Update

First, I must say that you are all so precious!  I have received so many e-mails asking me to post an update on how I'm doing...I guess I think y'all would be sick of hearing and so I don't mention it.  However, enough of you have asked me to post more often.  So, I will try...

Second, WOW on the replies to the baby stuff post.  Y'all are rockstars!!  I received comments, e-mails, etc.  So much to consider!  Thank you!!!

Finally, the update:

I'll start with the Praise!  The longest I've ever gone without a seizure was seven days.  That was last month.  The next longest was five days & that was at the end of May (pregnant).  Before that, it was four days.  So, we are seeing progress!  The four day seizure freedom was prior to the pregnancy.  The rest has been while we are pregnant.  So, we are seeing how this precious little girl is such a miracle in more ways than one!!!  To the praise:  I went eight days without a seizure!!!!!  Thank you, Lord!  It's amazing how much I'm able to accomplish when I'm not having seizures.  Energy returns and apparently I do, too!

We were able to rearrange a lot in the house this weekend to make room for our little miracle!  Her room was stuffed to the brim as the "catch-all" room and so we had to find a new home for all of that.  We seem to have made it work.  Now, we just need to decide how we are going to decorate her room!

Here is "good lookin'" putting her crib together:

Mom bought this for us a few years ago when a local baby boutique was closing...

This is about as close as he was going to get of a picture of me that day!!

Conpleted Crib

The first gift ever from her Daddy is just hangin' out, waiting for her!!

To get back to the question you have all asked...
It is such a blessing to go that long without seizures.  Yet, they started back up today.  I had some in my sleep with Charley Horses.  Then, I had some throughout the day.  I'm at three seizures for the day & three or four Auras (the docs say these are still seizures, but they are less intense & so I don't count them as such).  We have no idea what the triggers could be...we have found that physical activity, standing, and reading are triggers.  I always go to the grocery store on Mondays and so there is quite a bit of physical activity, standing, and reading (love my coupons) that takes place at the store.  However, I also had a doc appt.  Then, after the appt, we went to a few stores to see if we could find ideas for her room.  So, I was standing most of the day.  Could that have been the trigger for all of today's seizures?  No idea...

I definitely get spoiled to all of the seizure free days, though!!  I love it!!  So, please join us in continuing to pray that God will perform a mighty miracle and heal these seizures!!!!  Please, LORD!!  We trust that you can do this!  We want YOU to get all the glory, LORD!!!

I'll try to post more soon....