Update- Treatment 3

From M:
This is a good explanation of how we all feel...exhausted.

 
It has been a crazy week!

The Lord definitely answered your prayers in regard to P.  I have been able to hold her this week and got to feel like her Mommy for the first time this week. 

On Sunday, I was able to hold her for about twenty minutes at church.  It was so precious and something that I've longed for since the day she was born.  Each day this week, I have had an opportunity to hold her, feed her, & snuggle with her!  Praise Jesus!! 

The first time that Miss P really snuggled with Me.

Starting to discover the world around her.

Praise the Lord, we have started to see a lot more smiles from her this week!!!

We have been overwhelmed each day this week as we receive updates from the bank and our sweet friends that started The Foxhole Relief Project.  First, you are all such amazing prayer warriors!  Thank you for calling out to the Lord on our behalf...Second, you have all been so sacrificial with your financial blessings, as well.  You exceeded their goal and have blessed us beyond words.  Thank you!!

This is D.  She has been our precious contact at Lakeside National Bank that has been taking care of everything...

Miss P was getting bored laying on her play mat.  So, she got an Exersaucer!  We put her in it for the first time this morning!

I think she likes it!!

Taking in all of the sights and sounds.

                                                                                                                                                        

From B:

Thursday was our third of twelve treatments at home.  It was also the first treatment after the Foxhole Relief Project.  Again, a very heartfelt and humble THANK YOU!  We continue to be overwhelmed with your generosity in prayer and financial support.  

We began Thursday with another rough start-a couple seizures, difficulty getting M’s IV line started, and then multiple seizures during the treatment and during the rest of the day.  It has been very difficult to understand and justify what we are going through in hopes of getting to the end of this journey.  So, with even more prayer together we have discussed whether or not to continue this treatment.  We did have an opportunity to finally visit with our specialist from Mayo on Friday.  It is his recommendation that we stop treatment…As we thought, M shouldn't have more seizures after starting treatment.  They have said she might not respond immediately and have fewer seizures, but she definitely shouldn't have more. 

He proposed that we stop the current treatment, and start high dose IV steroids.  This could become problematic as there are some very serious side effects that he warned us of, even more than the current treatment.  We were able to visit with our local neurologist on Friday.  She shared the same disappointment with the lack of a positive response to treatment.  She also brought up a great idea that might point to the reasoning behind an increase in seizures.  As many of you know, M has been following the Ketogenic Diet for 2.5 years to treat her epilepsy.  To the diet’s credit, M has had the greatest seizure control with the Diet alone and no meds (better control on the diet & no meds compared to the diet & meds).

The purpose of the diet is for the body to use ketones for the necessary energy our brains need to function in the absence of Carbohydrates or Proteins.  So, the diet itself is a very carefully calculated ratio of carbs, protein, and fats, eaten at specific times throughout the day.  It is tailored for each individual (down to the tenth of a gram).  Furthermore, we have seen that many medications can interfere with the diet's success.  For example, many patients that are on the diet will titrate off of their anti-seizure medications because you can actually overdose on the medication, causing more seizures.  So, we have seen over these last few years, by experience, that meds and the diet can provide for an interesting medical situation.   

After visiting with our local neuro on Friday, she brought up that the current treatment contains proteins.  This could mean that M’s diet is now out of proportion or that the ratio is no longer accurate and she isn't burning ketones.  Thus, we would need to recalculate M’s meals on treatment days to account for the protein in the treatment. 

We are not sure if this is in fact the correct answer or solution, but it seems to make some sense and seems to be worth considering, especially given the other option that has been proposed. 

So we are asking for your prayers for guidance & wisdom at this time:

1)  Do we continue with the present course in hopes that we will see improvement? 

2)  Is there in fact a correlation with the protein in the current IV therapy and the diet and our answer lies in adjusting the diet for the treatment? 

3)  Do we try the new proposed IV therapy? 

4)  Do we stop treatment?

M is averaging 3+ seizures each day (she had 6+ today) and it is wearing her out.

Thank you in advance for your prayers.  These last few days have been fairly difficult and we just want to see and experience healing. 

Honesty

It's time to be honest...

I'm so frustrated, yet trying to trust.

The truth:  At the beginning of this prayer weekend, I didn't really expect much.  Then, I didn't have a headache after the treatment!!  I still argued with myself that it was only because they ran the infusion slower.  I still had a bunch of seizures, so it couldn't have been answered prayers.  Right?

Then, the seizures backed off...I went from six one day to only two the next, then NONE!  Hmmm...is this just a coincidence or is God really answering prayers?!?!

B and I spent some good time on Sunday talking about faith and what it really means to trust the Lord!

Isaiah 42:10, “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” (NIV)

Sunday was a precious day as I got to feel like a Mommy for the first time.  It was so special!  I was able to hold P for about 20 minutes in church and feed her.  So, there was an answer to your prayers!!!

This week has continued to provide me with at least one opportunity each day to be her Mommy!  I've loved it!!!  She is such a little giggle box and smiley girl!!  It brings me so much joy.  More prayers answered!!!

The migraine hit on Monday.  I still had a little bit of it this morning, but it seems to have subsided today!!!  So, Lord willing, there will be no migraine at all following this next treatment.

The seizures have increased again...I had six yesterday!!!  ; (  So, please keep those prayers coming.  I have a treatment tomorrow (Thursday).  Please pray for no more seizures and no more headaches...Your sacrificial hearts amaze me!  Thank you!!

Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for.  By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.
By faith Abel brought God a better offering than Cain did. By faith he was commended as righteous, when God spoke well of his offerings. And by faith Abel still speaks, even though he is dead.
By faith Enoch was taken from this life, so that he did not experience death: “He could not be found, because God had taken him away.” For before he was taken, he was commended as one who pleased God.  And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.    Hebrews 11:1-6

Miracles, Blessings, Thank you’s…

Humbled.  Humbled beyond what we could have even anticipated or expected.  We’re not even really sure of what to say other than first, TO GOD BE ALL THE GLORY, and Thank You!  Over the last four days the Foxhole Relief Project encouraged us, carried us through, and reminded us that while the last five years is not what WE had envisioned, it is God’s plan and He SUSTAINS and CARRIES us through the GOOD and the BAD.  Moreover, talk about the body of Christ….YOU….being the hands and feet of Christ on our behalf.  

Thank you to the friends of RHS ’97 who graciously listened to the Lord and began this project.  John 15:13 says “Greater love has no man than this, that a man lay down his life for his friend.”  Was this so true?  Many of you were on your knees daily for us crying out to our Father, Savior, and HEALER for M to be restored, Critter and M to be able to bond, and for our family’s strength and needs.  Throughout this weekend we too were on our knees sipping and drinking at the FOUNTAIN that sustains.  Boy was the water ever so good! 

To those that are still reading…There is a GOD.  God created you and I to have an intimate relationship with Him.  Because of sin, which we are born with, we cannot experience that intimate relationship with God.  But the good news is that God sent His Son, JESUS CHRIST, to be a sacrifice for our sin.  More amazing is that Jesus was here on earth fully man and fully God, walked a perfect life, was crucified/put to death on a Roman cross, buried…WALKED OUT OF THE GRAVE after three days.  By choosing to put our full trust in Jesus when he said “I am the WAY, TRUTH, and LIFE- no one comes to the FATHER, but by me” John 14:6, we can experience GOD in a way that is unbelievable.  We now have a great sympathizer…We now have a teammate in life that when things get bad, we can cry out for help and we will be restored.

RESTORED…Many of you over these last few days have prayed for our RESTORATION…note that the word REST is present.  We see that in the Lord’s restoration there also comes rest.  May this be true in our lives. 

Miracle 1:  As you know M receives treatment at home each week.  The last couple of weeks the treatment has left her in severe pain with a migraine headache that will not cease and lasts for four plus days.  As you can imagine, it is very painful and at times unbearable.  Yet, during the RELIEF project, M for the first time received treatment and did not experience any such headache.  Prayer answered…Thank you, Jesus!  Please continue to lift M up as she did get a migraine today that she is fighting and she will continue to receive treatments each Thursday.

Miracle 2:  We have always counted on the scripture in Matthew 6:25-34 where Jesus talks about taking one day at a time.  What comfort to know that even the birds are provided for daily….God cares that much, and yet how much MORE He CARES for YOU and ME!  So, daily we try to focus on TODAY rather than Yesterday or tomorrow.  Many of you that have corresponded have asked “How are you doing?”  While the week or the month might not have been the best, seizure-wise, we can sometimes answer that, “Today is alright.” 

Since your prayers, M has had multiple good days. For example, Sunday, the last day of the Relief Project, M did not have a single seizure!!!  While today she did have a couple, she still seemed to be able to go about a “normal” schedule with little difficulty.  Please continue to pray that we would see a decrease and that M would no longer have any seizures.  Moreover, pray for her strength to STEP OUT in FAITH each day TRUSTING  that God has His perfect timing and plan for her in this present trial.

Sunday, after church, we had a brief discussion on faith.  The Lord brought to mind the story about Peter walking on water to meet Jesus.  You know the story.  Peter steps out of the boat, begins to walk on the water at Jesus’ word of  “Come.”  Then, the winds and waves pick up and Peter begins to sink, cries out to Jesus to save him…Jesus’ response was “why did you doubt?”  Walking through this trial for the last five years has certainly felt like we’re sinking at times.  Yes, sometimes we doubted God’s plan.  We even at times lifted up our plan as an excellent substitute.  Yet, God in all His perfect attributes, knows exactly what He is doing.  That same Peter who began to doubt when the water became rough, was the same Peter that later Jesus said, "and on you, this ROCK, will I build my church and Hades will not overcome it."  How awesome to know that a man who apparently doubted and maybe even struggled with faith, was seen as someone that would bring about the church at the day of Pentacost.  

Miracle 3:  M had a post on our blog that many of you may have read: What’s it like to be a Mommy?  One of our prayers that you faithfully lifted up was for M to be able to experience motherhood and take care of Critter.  Even more, for Critter to not be as fussy so that M could take care of her.  Well today, M had an amazing day with Critter and was blessed with many smiles, giggles, and even a snuggle from her sweet, precious daughter.  What special “mommy moments” happened today that were such an encouragement and answer to prayer.  

These are some of the first real smiles M has been able to enjoy from Critter!

Miracle 4: As you might have already seen, financially you gave above and beyond what was originally set out as a goal from those that initiated this weekend.  We really can’t even begin to thank you enough for your overwhelming generosity.  To know that there are folks out there that care that much for us is unbelievable.  As a direct result of your sacrifice and generosity, Critter will now be able to have a full-time Nanny that will greatly help M as she continues with her healing process.  So, thank you!  It truly does take a village to raise a child… or maybe Texas, the US and 20 countries around the world to raise a child!

So, where to go from here?  Again, a very heartfelt and humble THANK YOU!  To see that PRAYER does WORK.  That if we humble ourselves and cry out to our GOD, He is faithful to listen and answer.  Thank you for giving your time and resources on our behalf.  We look forward to continuing to post on The FOXHOLE and giving you updates to M’s healing. 

Eternally grateful,

B, M, and Critter

Guest Post-Update

What a Relief!!!!!

 

Hello sweet family, old friends and new friends!  It has been true joy for us to watch the outpouring of sacrificial giving, heartfelt praying and sincere encouragement on B, M, and P this past weekend.  The Foxhole Relief Project was a success in so many ways.  We have received hundreds of prayers and over 100 donations.   We exceeded our financial goal of $7,500.00 and raised just over $9,600.00!!!!  M & P are on their way to having a full-time caregiver meet their current needs of consistent care.  (What a blessed person they will be who gets the honor of holding this position!)

 

It has been amazing to watch God move and work in the lives of so many through B, M, & P’s story.  We thank each and every one of you who joined in The Foxhole Relief Project efforts and passed their story along.  We are honored to have had the opportunity to read your prayers and see God in each of you! We would like to challenge you to continue to let God use you as His hands and feet and inspire others.  God can use each one of us if only we allow Him to. 

 

To God be the Glory for the things He has done!!!!

 

Anonymous Classmates – Class of 1997

Update from Nate's Mommy

03/17/2011 - "Nate is doing very well. He has been spending his days playing and working on regaining strength for everyday tasks. He has some really good days and some that are a little more difficult. We are waiting to go to the endocrinologist at the end of the month. This doctor will address his hormone and growth issues. He will be returning to LA in April for his 6 month post transplant scans and follow up visits. It is hard to believe it has been almost 6months since the transplant. Please continue to pray for Nate and his complete healing of cancer and the side effects of treatment. There are so many children who are fighting this terrible monster. If you want to pray for a few extra kiddos I am listing some who are close to our hearts and who are fighting . (Miceala , Matt Romig, Matt Burbee (continued remission), Nathaniael, Collin, Ethan, Devon, Vincent, Little Jacob and many more.)

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

Guest Post

Dear Friends & Family of B, M, and P ~

For years we have followed B & M’s story and prayed for healing and care for them.  However, if you are anything like us you have not been able to actually give much time or food to provide physical care for them.  Recently, God brought a couple of M’s high school classmates together by laying the desire on our hearts to start a relief fund to assist B & M.  Being mom’s ourselves, we know how important health and consistency in care are for a baby.  As a result, we have created a website sharing this precious family’s story, calling for first and foremost a weekend of Prayer, and secondly, Giving.  Let’s yearn and cry out for HEALING for M!  In addition to prayer, wouldn’t it be wonderful if we could raise enough money to provide a full-time care-giver to come in over the next 12 weeks to get to know M & P and be able to consistently care for them.  What a comfort for P, having the same person hold her day in and day out when her mom is not able to!

 

Please, please open your hearts, lift up your prayerful voices, and give of yourself to provide relief for this honorable and humble family.  We are blessed to be a part of this and pray God will continue to use B, M, & P in His Mighty Way! 

 

Please visit The Foxhole Relief Project website (www.thefoxholereliefproject.com) sometime between 5-19-2011 and 5-22-2011.  We are hoping to raise $7,500.00. 

 

Dwight L. Moody writes:  “We honor God when we ask for great things.  It is a humiliating thing to think that we are satisfied with very small results.”  LET’S ASK FOR MIGHTY THINGS!  GOD, HEAL M AND BLESS THEM INDEED!  We can’t wait to see what God is going to do.  Thank you B and M for being the tools God is using to inspire us. 

 

Anonymous Classmates – Class of 1997

Since our last post M has had another treatment.  We began receiving three treatments in the hospital. Then, we had our first of twelve home health care experiences as M will receive treatments every week at home until we go back to Mayo for our follow-up sometime in August. 

So, what to expect?  Well, we for sure were hoping that we would see results immediately.  Based upon Mayo’s description, it seemed that we would get to see changes very soon.  Unfortunately, that has not been the case…since M has begun treatment her seizures have continued to increase even more than they had post-pregnancy.  While we are not sure about the time it should take to respond to treatment, our Neuro here in Dallas indicated that we should start seeing results around the sixth treatment.  Lord willing, she is absolutely right.  M is quite tired and exhausted from her now nearly 6 seizures per day.  The other difficult experience has been an extreme migraine.  While two full treatments have been completed, M has come from each with a migraine that has lasted at least three days.  Couple that with a crying baby, and well you can probably get the picture.  Please pray for peace, that we would begin seeing results from M’s treatment, and that she would not experience the painful migraines, post infusion.

Lastly, please join in us in prayer as we continue with M’s treatment each Thursday at our home.  Our first experience lasted all day when it was only supposed to last about four hours.  Not all of the supplies were sent and if you can imagine, at one time we had three nurses in the house trying to get a line in M.  Thus, we did not begin treatment until five hours after the first nurse arrived.  We are praying for a much better experience this week. 

Here are some pics of the amazing staff we had at Baylor and as well, a spectacular exhibit of molded and cast hands.

M wearing the shirt that I wore to every single chemo appt. that I had...

Dr. Suess' hands

Billy Graham's hands

One of the walls of hands...M used to look at these all the time, as a kiddo, when her Granny & Grandaddy were in the hospital.

The hands of the Mayo brothers: the ones that started The Mayo Clinic

Sweet staff at Baylor for the first round of infusions....

Please stay tuned as we have an exciting announcement that will be shared on Thursday (maybe sooner).  We can’t wait to see what God is going to do and share it with everyone. 

Joy's Journal-Connor's Mommy

Tuesday, May 10, 2011

Have you ever felt weary or just plain tired?  Have you felt like you have had enough already?  Felt like the attacks just keep coming?  No respite?  Felt like your card has been punched and it's time for someone else to take a turn?  I admit that over the last few years, I have felt like that.  Over the last few months, I have felt it even more.  The grieving process continues to rage.  I still see the effects of cancer and Connor's death on my family's lives.  I still struggle with doubt and anger at times, facing the truth that remaining faithful to God doesn't always produce a happy, rosy ending.   

I feel like I've been playing four full quarters of basketball and I'm ready to sit out for awhile.  I want God to put me on the bench and give me some respite...some respite from these internal and external struggles.  Lord, let me rest awhile.  We were studying Elijah in I Kings 18 and 19 in our Sunday School class.  I found that I could really relate to him.  He also came to a point where he said "enough!" to God.

After a mountain top experience, where God showed Himself to be powerful and faithful, Elijah came to a point of despair when He felt God did not come through for him.  Elijah had confronted the evil King Ahab and challenged the 450 prophets of Baal.  God answered Elijah's challenge that God would rain down fire on the altar, after the prophets of Baal were not successful with this.  The defeated prophets were then slaughtered and Elijah felt like God would not fail himnow.  "Smooth sailing from here on out, for sure," he was thinking.  Soon after this, Queen Jezebel told Elijah that she would have him killed just like her prophets were killed.  So, Elijah ran!  I think he felt betrayed by God.  Elijah had been faithful, so why didn't God keep his path protected!  Why was disaster pending?

Tait and I experienced many miracles with Connor for the first 3 ½ years of Connor's illness.  God showed himself to be powerful and faithful!  Then, he was diagnosed with his second cancer and we too felt betrayed.  No miraculous healing was coming.  Were we not faithful?  Didn't we deserve some success here?  Not more disaster, surely?

Elijah went to sit under a broom tree in the wilderness.  He had given up.  Enough!  He was questioning God's plan for himself after he had remained so faithful.  Again, I can relate.  But after a time under this tree and in a cave, God shared a vision with Elijah.  He shared a vision of what Elijah's new mission or purpose was.  After God shared his vision, Elijah found new purpose and began his work for the Lord again.

I think this time for Elijah was just a time out, a time to rest on the bench.  Then, he was ready to get back in the game.  He was ready with his new vision and new purpose.  That is what I'm doing now.  I'm sitting on the bench, waiting for God to reveal to me his new purpose for my life.  I believe it is centered on TeamConnor and the book we wrote.  I'm praying that when God shares his vision with me (my new purpose), I will be rested and ready to get back in the game!!!!  So for those of us who are weary and tired, let's try to find some way to rest; recharge. God will surely remain faithful and continue to guide our paths.  He will share with us the vision for our lives - our purpose for carrying out His will!  Let's finish the race with perseverance.  

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles and let us run with perseverance the race marked out for us." 
Hebrews 12:1

Joy Cruse

Update Day 2 and 3

We are still at Baylor in what will be Princess' last day for her infusion before returning home.  Beginning next week we should be having Home Health coming in weekly for the next 12 weeks to do her injections.  Thereafter, we'll return to Mayo to check on our progress and then return for more treatment.

While we have not seen immediate effects/results in the way of Princess' seizures ceasing, we are hopeful that we can see results soon.  The Neuro seems to imply that we may not know or see any changes until about the 6th week, but we sure hope and pray that it would be sooner. 

Our time here has been somewhat good.  While not our mission, we have been able to spread the word about the Ketogenic Diet and it would appear that the entire Epilepsy Monitoring Unit is on board with learning more and even beginning to implement the diet as treatment.  Already we have heard of a nurse that is wanting to learn more and provide a lecture/training session for the staff on the diet.  While we may not have had extensive experience with the Baylor Medical System, we have been overly impressed with our experience in the OBGYN and Neuro departments.  From Critter's womb-time through delivery and now Princess' neuro experience we have been met with a very knowledgeable and caring staff that shows a desire to listen and learn from the patient.  As you can imagine, it can be very frustrating for the patient to meet with a physician that seems to not want to listen or even learn from their patient.  So, our time with Baylor over the last year has been refreshing. 

Prayers:
     - Pray that we will begin to see favorable results from Princess' treatment and these seizures will be gone.
     - Pray that Princess will be able to get some great "mom-time" with Critter

Lord willing, may our next post be the one where we can praise God together that Princess' seizures are NO MORE!!!

B

Treatment Day 1- Seizure Freedom Day 1

May 4, 2011.  May this be the last day that Princess will ever have a seizure! AMEN.  We checked into Baylor Hospital this morning, bright-eyed and bushy tailed (Fox fashion) to begin Princess' IVIG therapy/treatment for her seizures.  We will be here for the next three days as each day she will receive her treatment over a course of 4 to 6 hours.  Please be in prayer for our time here as we confidently pray that the Lord will use this treatment to heal Princess and that she will have no complications with the IVIG.  The complications that could arise are serious, but we are confident that Princess will be okay.

Along this 5 year journey we have seen different months have significant bearing.  For example, March of 2006 is when Princess began having seizures.  March of 2008 is when she was diagnosed with Epilepsy.  March of 2009 is when she began the Ketogenic Diet.

May, too, has also had great meaning to us.  May 5, 2007 Granny passed.  That day as Princess held her hand and watched Granny breathe her last, the Lord took hold of Granny's hand and welcomed her home.  May of 2010 is when we became pregnant with Critter (it so happened that on May 5, 2010 Granny spoke to Princess and shared with her that we were pregnant- two weeks later it was true!).

So may this May prove to provide a miracle too!

We look forward to keeping you updated over the next few days.

Princess and the amazing Dr. S

Critter sporting her world famous Buc-ee's T-shirt

Wednesday it is!!

ALL Praise to Jesus!!!

We just heard from the doc and they are going to be able to admit me on Wednesday!!  They were able to order the medicine that doesn't have glutamate in it and it should be in on time!!!  So, treatment should begin Wednesday.

B's Mom is making a precious sacrifice and she's coming in town again to help with Miss P!!  So, Lord willing, all of our bases are covered. 

Lord willing, this is the treatment that will work, the seizures will be gone, my brain will heal, and I can have precious time with my hubby & baby!!!

Thank you all for your faithful prayers!