Dakota

Just received this update:

Jackie just heard from Carol, Dakota's mom, she said he has pneumonia in both lungs now and is in serious condition at Children's.

Let's all lift Dakota up to our Father.

Update on Nate!!!!!

From Nate's Dad:

We did not see Dakota's mom today as soon as I do I will pass on how he is doing.

We just got great news!!! Dr. Bowers called and said that he looked at the MRI and it looks great. He has a hard time saying completely gone or 100 percent, but he said the only thing that they can see is so small that itis not distinguishable, meaning it could be a few cells or just scar tissue. The same is true for both the brain and the spine. Maybe even more positive news is that the initial test on the lumbar puncture had six cells floating in it and all were noncancerous. Let us have no doubt that God has done this. Thank you all for the prayers. Just a few months ago, things looked pretty bad. God is good, please pass the news on to everyone you know, hopefully it will help others to know that God is good. Nate starts a new phase of chemo on Monday and will continue it for the next eight months. He also requires quite a bit of physical rehab. Please continue to pray for him to walk again on his own and become stronger in his speech and overall movement, he shakes quite a bit and needs to get a lot stronger. Also pray that he does not have any complications with any of the new chemo drugs he will be getting for the next eight months. God bless you all. Our God is certainly capable and willing to hear our prayers. Nate has done and will do many things in the name of the LORD.

Praise Jesus! I know the feeling of rejoicing that a family member is cancer FREE and am so grateful for it each day! Thank you, Lord, for healing Nate!! Rejoice!!!

From Nate's Dad

A quick post about Nate (also, his Dad is going to check on Dakota tomorrow for all of you prayer warriors lifting him up, too):

Tomorrow, Monday April 27, Nate will have his four month MRI at 8 am. As you all may remember, his two month MRI showed the cancer to be 95 percent gone.

Tomorrow's MRI is the benchmark for what happens for the remainder of the year. If the cancer is all gone, then he moves on to more chemo to prevent it from relapsing in the future. If it has not shrunk further or grown back any, then radiation is the method of treatment that would be chosen by the doctors, essentially meaning chemo alone did not work.

Radiation causes many problems and possible retardation in young children, at a minimum there could be severe learning disabilities. Under the age of three, it is not even considered due to the issues it causes. As you know, Nate just turned three on February 15th.

Please specifically pray that the cancer is completely gone without any trace at all. This allows the chemo to move on without having to do any radiation. This would truly be a miracle in light of where Nate was just a couple of months ago. We know our God has shown Nate and our family His mercy and love so many times during this process and believe He will show it again with tommorow's results. Usually the results come out by early evening the day of the MRI, so no matter when you first read this, please pray for no cancer in Nate's body. Thank you all and may God bless you.

Aggie Muster

Dr. Robert Gates, left his post as President of the Greatest University to become our Nation's Secretary of Defense. He returned to the Greatest University, Texas A&M, for this year's Muster.

Please take the time to watch him & hear his words.

Dr. Robert M Gates Muster Speech

Connor Update

From Connor's Mom:

Wednesday, April 22, 2009 3:14 PM CDT Connor is hanging in there. He has moments of weakness and moments of strength. I love it when I see moments of the old, goofy and energetic Connor. It just warms my heart and lightens my burden. Praise God for those moments of sunshine. His feeding tube issues seem much better now. He's not in nearly as much pain. Thanks for the prayers.

He will get another dose of cetuximab tomorrow and then we will finish up the chemo on Monday night. He will then have a week or 2 off, depending on his blood counts. Please pray that his bone marrow will make his counts rebound quickly. We will complete another round of this (3 week period) and rescan after that round. PLEASE PRAY THIS TREATMENT IS WORKING. We haven't seen any more evidence of a rash. I guess it is all working behind the scenes. As always, God wants to see our faith in action. Who needs physical evidence, right? haha. It would be nice sometimes, though.

PLEASE CONTINUE TO PRAY FOR GUIDANCE. We are looking into several different avenues right now and waiting on lab results (labs that are looking at Connor's tumor to find any markers - ways to do targeted therapies). PRAY THESE LAB RESULTS WILL SHED SOME LIGHT AND DIRECTION ON OUR PATH. Connor is truly a pioneer for this new cancer.

We are also communicating with the surgeon in New York again. Dr. La Quaglia is the surgeon who was going to operate on Connor in March of 2007. The surgery was canceled indefinitely, due to Connor's low platelet count at the time. Anyway, he does a special type of interoperative radiation, where he uses radiation during the surgery. Connor's new cancer is ironically caused by radiation and destroyed by radiation. He cannot have a large enough amount of traditional radiation to the tumor, but interoperative radiation may be an option. If he could remove all the resectable tumor and use this radiation on the inoperable part of the tumor, we may be looking at a new option for Connor. Our doctors in Houston will be talking with him, hopefully next week. PLEASE PRAY THAT GOD WILL EITHER OPEN OR SHUT THIS DOOR - WE NEED HIS GUIDANCE MORE THAN EVER.

We have been studying Psalms this week. What beautiful, raw emotions are expressed in this incredible book. I found so many words that struck home to me. Here are some verses from Psalm 13

"How long, O Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts
and everyday have sorrow in my heart?
How long will my enemy triumph over me?
Look on me and answer, O Lord my God.
Give light to my eyes...
BUT I TRUST IN YOUR UNFAILING LOVE;
MY HEART REJOICES IN YOUR SALVATION.
I WILL SING TO THE LORD, FOR HE HAS BEEN GOOD TO ME."

Thanks for your prayers.

Muster

I wanted to pull together a wonderful post about Aggie Muster.

I didn't, but our friends, the Lechler's did:

HERE

What is Aggie Muster?

On April 21st each year, on the anniversary of the Battle of San Jacinto, Aggies gather together, wherever they are, to commemorate fellow Aggies who have died during the year. The tradition was begun 21 April 1903.

A little History on Muster:
History of Muster

Aggies gathered together on June 26, 1883 to live over again their college days, the victories and defeats won and lost upon the drill field and classroom. Eventually the annual gathering evolved into a celebration of Texas Independence on San Jacinto Day – April 21st. Over time the tradition has changed, but its very essence has remained “If there is an A&M man in one hundred miles of you, you are expected to get together, eat a little, and live over the days you spent at the A&M College of Texas.” Muster is celebrated in more than four hundred places worldwide, with the largest ceremony on the Texas A&M campus in College Station.

Softly call the Muster,
Let comrade answer, “Here!”
Their spirits hover ‘round us
As if to bring us cheer!

Mark them ‘present’ in our hearts.
We’ll meet some other day
There is no death, but life etern
For our old friends such as they!

Update from Connor's Mom

Thursday, April 16, 2009

Connor received his second dose of cetuximab on Tuesday. He has a couple spots on his legs, but no major rash. Still praying for that. I'm hoping this second dose will bring on the rash. Maybe the tumor has absorbed all the cetuximab and there is none left over for the skin to make a rash?? Also, his chemo is not lowering his counts too much, so that's a praise!

WE had a trip to the ER last night for problems with his feeding"button." We were afraid it had been pulled loose, but an x-ray proved that everything is still intact. He is just extremely sore from the big yank to the button Wednesday morning. The button is leaking on theoutside, so Connor is not getting all his nutrients. PLEASE PRAY WE GET THESE ISSUES WORKED OUT. I'm tired of the pain he is experiencing from it, and he needs the nutrients from the feeding at night, so he doesn't lose any more weight.

1. PLEASE CONTINUE TO PRAY FOR CHRISTIE'S PRAYER REQUESTS FOR EACHMEMBER OF THE FAMILY. (VERY INSIGHTFUL)

2. PRAY FOR RASH OR THIS DRUG TO WORK TO SHRINK THE TUMOR (OR AT LEASTSTOP IT)

3. PROTECTION FOR HIS ORGANS FROM THIS TUMOR

4. FEEDING TUBE ISSUES TO BE WORKED OUT

5. STRENGTH AND STAMINA, PEACE OF MIND

6. COMPLETE HEALING ON EARTH

7. OUR ABILITY TO BE STRONG IN OUR FAITH AND SHARE GOD'S LOVE TO THOSE WE MEET ON THIS JOURNEY

We will be heading to Oklahoma Sunday for my Grandmother's funeral. She passed away this morning in her sleep at the age of 95. She was a pastor's wife and I will always remember her playing the piano at church and singing duets (beautiful old hymns) with my mom. Her nickname was Zip (real name was Zilpha) because she was always "zipping" around. WE are praising the Lord that she is at home with our Heavenly Father now.

Our Bible Study studied the book of Job last week, and as you can guess, many of the verses hit home with me. Often times, we want to know the meaning/purpose behind our trials, just like Job did. When Connor is experiencing pain or is not able to participate in simple activities with his friends, I will admit that I struggle with the unfairness of it all. It really seems so much for a child to bear (for half his life - the only part that he really remembers).

I like this quote from Alfred Edersheim. "We cannot understand the meaning of man's trials; God does not explain them. To explain a trial would be to destroy its objective, which is that of CALLING FORTH SIMPLE FAITH AND IMPLICIT OBEDIENCE. If we knew why the Lord sent us this or that trial, it would thereby cease to be a trial either of FAITH OR PATIENCE."

Sometimes, all we can do is rest in His Sovereignty (which is very difficult at times). How does the knowledge of God's providence help us? We can be patient when things go against us, thankful when things go well, and for the future we can have good confidence in our faithful God and Father that nothing will separate us from His love.

JC Ryle explains it this way. "This only we may be assured of, that if tomorrow brings a cross, He who sends it can and will send grace to bear it." I guess at one time or another, we are all called to share in the suffering of Christ. This Easter season has definitely reminded me of that.

Thanks for your faithful prayers. Please keep our friends, Cody, Caden, and Carson, in your prayers as they continue to fight their own battles against cancer.

Still believing,

Joy Cruse

Dakota

Many of you have seen the link on the right to pray for Nate, a sweet little boy with cancer. Let's get on our knees right now for this request his Dad just sent out for all of us:

Hello this Wes Oxford, the father of Nate. As you all can imagine, in our time at Children's we have seen lives ended early. We have come to know many families and their stories.

Right now, I need all of you prayer warriors out there to rise up once more for a little boy named Dakota (8). Dakota was diagnosed with Leukemia at the age of five. He went through three years of chemo and other treatments and became cancer free at the end of last year. After three months of being clear, it came back stronger than ever.

Dakota's only chance now is to get a bone marrow transplant. He was matched with a donor last month and the culture has been cultivating so that it could be placed in Dakota.

As with all chemo drugs, the body can decide to reject them at any time even after taking them for years. We saw how Nate had problems with Methatrexate the first time and seemed to be okay with it after that. We also saw how Cisplatin seemed to affect him worse this time. The point being, all chemo looks to kill something and sometimes it turns on good cells.
Dakota's body needs at least one of two known chemo drugs to keep fighting his blood cancer so that he can be at the cancer free point necessary to get the bone marrow transplant. He had taken one of these chemo drugs for years before and it was effective in killing the cancer. For reasons unknown to the doctors, his body will not accept it anymore. He recently spent 9 days in ICU recovering from septic shock due to the drug, which left him in a psychotic state for days screaming, hitting, and not even recognizing his mother.

After recovering from the septic shock. Yesterday they tried the alternate chemo drug. Again, his body rejected it and he is now back in ICU. His mother and Jackie were talking this morning and Dakota's mother said that Children's has asked her if she just wants to take him home and let him die peacefully, there is nothing more that they can do.
Children's has been a wonderful place for Nate and for Dakota also, but man's wisdom has a place that it can not go any further. Brothers and sisters, Dakota and his family needs your prayers. This is the end in the world's eyes. I am not saying that every child at Children's will be saved from death, but I do know that this child and his family have come to know us and I know that God wants me to send Dakota's story out to you all. Pray for his family's hearts, souls, and the peace that God can give them. Pray that God will use Dakota and his family to bring glory to our LORD in the Gainsville, Texas area that they are from.

So many people have been behind Nate, Jackie, Jake, Luke, and me. We get emails constantly from people who you all are making a difference in their lives just by telling others about your faith in God to heal Nate and how good God is. Dakota can make this same impact. Pray that Dakota and his mother become vessels for Christ and that they turn into instruments that our LORD uses to impact their hometown. Remember that with God all things are possible and we pray that it is HIS will to heal Dakota and for his and his mother's faith to become a testimony for others.

May God be with you all and bless you all today. Do not forget Dakota, please pray for him this very moment, spread the word to pray to everyone you know - it could change their spiritual life, and do not forget to sign up for the National Bone Marrow Donor's List at www.bethematch.com promo word childrens, completely free and can save a kid's life. Nate, Jackie, Dakota, his family, and I thank you all.

Cardboard Stories

This is a post from one of my college roomies:
Cardboard Stories

If you don't go to her site to read the details of this post, at least watch this video from the members of her church.


Cardboard Stories from The Austin Stone on Vimeo.

MAD

After reading back through this, I realized it's long and might be boring to many of you...so, I plugged in some pictures (some have nothing to do with the post) here and there to break up the monotony!!

************
You are each so precious to us. It is so humbling to go a few days without posting anything on my health and have so many of you so concerned. I feel like praying for Connor should be the focus right now. So, I have held off on posting anything about me. However, I want to thank you all for your sweet love and concern. I will try to give a good update.

B, Connor's Mommy, Connor, Me

I "officially" started the diet March 22nd. I had some seizures for a few days following that. However, I then went eight days without any (Praise the Lord!!!!)...April 4th, they started back up pretty intensely. I went a few days where I couldn't accomplish much because I was having so many and each one wears me out more and more. I think we've mentioned it on here before, but while I was in the hospital last year they said that each seizure puts the strain on my heart equivalent to that of running a marathon. So, eight seizures/marathons a day can become pretty intense and draining. There should be some kind of award for running a marathon in two to three minutes (that's about how long each seizure lasts), right?

The diet for kiddos with seizures is called the Ketogenic Diet. In adults and some kiddos, there is a newer version called the Modified Atkins Diet (MAD). It has very little to do with Atkins, but that is the name. The doctor allowed me to have 10 carbs each day. So, each meal is 3 carbs, one snack that is 1 carb. I basically stopped eating at this point because I couldn't come up with meals that fit that criteria. So, the doc allowed me to increase to 15 carbs/day. Therefore, 5 at each meal and my snacks have to have zero carbs.

My snuggle bugs!!

The point of the diet is for your body to stop burning glucose for energy and start burning Ketones (which comes from fat consumption, rather than the carbs). This is how seizures were originally treated. Then, meds came along and it was much easier to pop a pill so the diet lost popularity. However, there are so many patients that don't respond to the meds. So, a parent was doing research a few years ago and stumbled upon this diet and now Johns Hopkins is doing research on this diet and implementing it in many patients' treatment regimen.

www.atkinsforseizures.com is a great site with lots of info about the diet.

Here's the cool part:
*they are finding that in many cases, patients respond better to the diet than to medicine.
*if you are on meds, you have to take them for the rest of your life to keep your seizures under control. However, they are finding that somehow this diet is like a reset button for the brain and can even produce healing of the brain.
*most patients are able to start titrating off their meds. Then, once they are off their meds, they can start to titrate off of the diet!!! We have heard that anywhere from 6 mos. to two years is the time frame to look at for this treatment.

Here's the not so cool part:
*the FDA allows companies to round down when they are doing nutritional labeling. So, if a company picks a small enough serving size, they can round down and say there are zero carbs in their product. However, when you read the ingredients and it clearly states sugar....um, that would have carbs. So, the trip to the grocery store takes much longer as we have to read every label. Then, if it is an item we need, we have to research the exact # of carbs for the serving size we are using to make sure I don't go over and cause an insulin spike.
*Splenda, Sweet n' Low, and any other sugar alcohols are considered to be seizure triggers and are not supposed to be consumed while on this diet(some patients can consume Splenda, but most struggle with it). Most of the world goes low carb by consuming things with sugar alcohols or Splenda. Not a choice for me right now. Thus, making it even harder to find low carb options.

Another necessary evil during this diet is testing Ketone levels. I have to buy these little strips at CVS and test my Ketones throughout the day. Most people on one of these two diets need to have their ketones super high to get results. So, we were doing all we could to get there. That's when I had the night that B almost rushed me into the ER. Then, after I went a while without any seizures and they started back up again, we looked at the "journal" that I have to keep, to see what had changed. Turns out that the deeper I am in Ketosis, I tend to have more seizures. So, I have to keep my Ketones in the moderate range. How do I do that? Well, it's a delicate balance, but we have found that the 1:20 ratio seems to be the spot. That is 20 grams of fat for every one carb. Yep, that means I'm putting an extra pat of butter on just about everything I eat.

You can see that life is tough for Hank and he's clearly bored with this post!

So, meals aren't as easy as they once were. It takes a lot of planning and preparation. Going out to eat is near impossible. However, the manager at On The Border out here is precious and they have prepared a dish especially for me so that B can get his chips & salsa fix!!! Last night we went to Buffalo Wild Wings. I had to speak with corporate and get the exact counts on everything. They were amazingly honest and told me all of the places they rounded down. The manager there was amazing. Wonderful Christian guy that told B that just by our conversation he could tell he was a spiritual leader for our family! That's my hubby! So proud!!

The manager actually prepared my food himself and measured everything to make sure there were no discrepancies. He even comped my meal which was beyond precious since I know it required so much more work!!

So, we are still working each day to get this art down to a science...we keep a calculator handy so that we can do the math and make sure I am getting enough fat to go with each carb. I think we are getting closer to getting the numbers right...each day is a test, though.

Now that I've given you all of the boring details, I want to end this on a big Praise the Lord!!! As most of you know, we found out in November, after the surgery, that the medication I was on was treating the seizures on one side of my brain, but not the other. So, they added one more medication to my regimen hoping it would treat the additional seizures I was having. I was still having 5-10/day on very high doses of the original med. It did help and brought me down to 2-3 seizures per day. Well, God is so good because April 2nd I took my last dose of the 2nd medication. After much begging, the doc let me titrate off of it. Therefore, I am only taking the original med and doing the diet. The last few days, I have only had one or no seizures each day!! So, we believe the Lord is using this diet to make a real impact!!! Thank you, Lord!!

Please pray for our wisdom in how to implement each step of the diet and in making decisions about the foods I eat. Also, please pray for the doctors and the dietitians wisdom in this process.

Finally, Praise the Lord with me for my hubby that comes home from a super long day of work every day (he wakes up at 4:45 every morning) and immediately moves into the kitchen to make dinner for me. He is such an amazing provider!! The Lord has blessed me immensely with this man!!! Now, may I be healed so that I can give him all the blessings he deserves in return!!!

Again, thank you all for your prayers and your sweet concern to e-mail me and ask how I'm doing since I hadn't updated! You are all such a precious encouragement to me!!

He knows what we can handle

In a little bit, I am going to post an update on how I'm doing, but this devotional is so poignant. It meant so much to me with all that is going on around us. I want you all to get a chance to read it. I hope I did all I'm supposed to do to make sure credit was given where it's due.

I Know How I Designed It

Van Walton

"...we are God's workmanship created in Christ Jesus..." Ephesians 2:10 (NIV)

Devotion:

My amazing husband can do anything. He's a fix-it man. There isn't anything he can't repair or create. He rebuilds damaged computers for family and friends, repairs weed eaters and garage door openers for neighbors, and rescues broken furniture from trash heaps. Recently he brought a chair home from a dinner party. It wasn't a gift and we didn't steal it. Someone sat in it and broke it!

After two days of taking the chair apart - performing what looked like orthopedic surgery to me, you know when pins and screws are inserted to keep bones and joints from further damage -- followed by a little gluing, sanding, and staining, the chair looked brand new.

"Wow!" I said, impressed.

"Sit in it and rock back," he encouraged.

"Rock back? I don't think so! What if I break it?"

"Oh, believe me. You won't."

"How do you know?" I asked, not convinced.

"I know how I designed it. I know the pressure points and how much stress it can take" he responded with a smile of confidence. "Go on. Sit in it and rock back."

I sat down and rocked back.

The chair was solid. I don't care who sits in it, or how they land in it now, it will not break.

I think about the times we don't believe we can handle any more stress. The pressure seems overwhelming and we cry, "Time out! I can't take any more!"

God responds, "Trust me. You will not be destroyed. I know your pressure points. I know how much stress you can take. I know how I designed you."

I cannot describe the peace I felt when I related the work of my husband's hands to the work of God's hand.

Of course He knows how much I can take. After all He is my Creator, the one who bent down by the river and fashioned me with His hands. He's the one who knit me together in the depths of my mother's womb, the one who is called the Potter.

He knows the exact temperature needed in the kiln to create the perfect clay vessel. He knows how hot the fire must be to separate the dross from the silver and gold. He knows how much pressure a diamond or emerald must withstand in order for it to come forth solid and brilliant. He knows how long the irritant must sit in an oyster before it becomes a pearl.

My Father knows exactly how much I can take. He knows because He designed me. With that realization I am able to trust Him and smile at the future, no matter how hard life is today.

Lord Jesus, You are the Carpenter. You know exactly how to build a piece that will withstand pressure and stress, a work of art that will not easily crumble. You created me the same way. Rather than tremble in the face of despair, help me trust in Your design. In Jesus' Name, Amen.

Application Steps:

Memorize this phrase and repeat it whenever you feel you "can take no more" pressure or stress: "God knows my stress and pressure points. He will not allow me to be crushed. He knows because He has designed me."

Reflections:

What brings me to the edge of despair?

Can I trust God that I may have to undergo stress and feel some pressure before I reach His final design for me?

Power Verses:

Malachi 3:3, "He will sit like a refiner of silver, burning away the dross. He will purify the Levites, refining them like gold and silver..." (NLT)

2 Corinthians 4:7-9, "But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us. We are troubled on every side, yet not distressed; we are perplexed, but not in despair; persecuted, but not forsaken; cast down, but not destroyed..." (KJV)

© 2009 by Van Walton. All rights reserved.

Proverbs 31 Ministries

From Connor's aunt

Friday, April 10, 2009

Several weeks ago I checked the stats on the connorcruse.com website. Often 400 – 500 people check up on Connor in a single day! This is an amazing number of people praying, caring, loving Connor, and just wanting to share some of Tait and Joy’s burden in a small way, if we can, even after four very long years. Sometimes, all we hope for as Joy and Tait put one foot in front of the other, is that they will hear the
sounds of our footsteps walking with them.

The funny thing is, we are all getting fed by Joy and Tait’s faith, endurance, and wisdom as we try to help them. Every time we check in we find Joy being… well... Joy, relentlessly courageous and faithful, trial after trial, disappointment after disappointment, finding God’s hand in the smallest victory, and sharing this with us.

Can you imagine the frustration Satan must feel about this family? He sends one of the most painful trials imaginable to a family and with God's help, they turn it into a graduate-level course in faith for anyone who wants to tune in.

If you were Satan, wouldn’t you keep turning up the heat? Wouldn’t you delight in the slightest sign of weariness? Tension? Fear? Wouldn’t you look for any weakness or place of entry so you could silence this message once and for all? “Shut up!” he must mutter to himself.

I often have this crazy wish for my little brother and his family. I wish we could chop this burden into a hundred tiny pieces and hand them out to all of us who would gladly take a few so this one family, this one child, would not have such a heavy burden to carry on their own. Because
even though there are hundreds, if not thousands, of us walking the journey with Joy and Tait, it’s not the same as living it, day after day, hour after hour.

It’s taking a toll, folks. Satan has the heat at a high boil. The more intense the heat the more intense our prayers must be. Joy and Tait are in the thick of it, in the trenches, and we need to climb down in there with them.

For the next several weeks we need to bathe this family with constant prayer. When I walk in their house on Easter Sunday I want to feel the Holy Spirit surrounding each of them with love and protection. I want to sense God’s power and strength throughout the house. I want to look
at each of their faces and see that they are glowing with renewal and inexplicable peace, feeling Christ right there, in their home, every minute, with them.

Will you do this? Will you also pray for each of them individually? Pray however you feel led, or for the following:

Tait, for insightful leadership and limitless hope and patience.

Joy, for relief from weariness, to hear God’s voice and feel overwhelmingly His love and never ceasing presence.

For Mackenzie, to have more 11-year-old moments and less adult moments, a return of child-like joy and trust.

For Connor, relief from pain and nausea, the return of his swagger, his belly laugh, his ability to lose himself in play, a rash that covers his body from head to toe, and for complete healing on this earth.

For Carson, lifting of the weight of fear for his best buddy, to not ever feel like the over-looked brother, and understanding beyond his years.

For Mason, to not feel lost in a family that has had one long crisis his entire life.

Let's lift up Joy, Tait and all of their children in this season of hope as they fight the good fight. Thank you in advance from the bottom of my heart--

Depending on Him--
Christie

NOTE: Joy and Connor will return to Houston Tuesday for the second treatment. There’s no
rash yet, but they said it could take up to a week or even longer.

More Connor News

From Connor's Mom:

We are flying to Houston tonight and Connor will get his first iv dose of cetuximab tomorrow morning. We will be coming home tomorrow in the late afternoon. I believe Connor will start his oral chemo tomorrow, also. I don't know that for sure, though. Here are the specific prayer requests:

1. Pray this treatment works to kill and shrink the tumor. Tait and I feel really good about this new plan.
2. Pray Connor will get a rash. (sounds crazy I know). Cetuximab works on the epidermal receptor on this tumor, but your skin is also an epidermal layer. If he gets a rash on his skin, that means the drug is working on the outside epidermal layer, which also means it's working on the inside epidermal receptor.
3. Pray that God continues to protect his organs from the invasion of this tumor. God has remained faithful so far. Connor's digestive system continues to work.
4. Pray for Connor's strength and stamina, and his joyful spirit to continue.
5. Pray for our strength and endurance as a family.
6. Pray we spread God's love and hope to others we meet.

I know that this is not the quick solution from God that we wanted, but I know that God is still Good! After we received the news about the tumor still progressing, I prayed that God would reveal Himself to me. Show me some answers to my many questions. I told my mom that it seems like He is just not answering our prayers right now, He seems inactive. After this conversation with my mom, I started my Bible study for the week, which was on Esther. I felt like this lesson was speaking right to me and my situation. I will share with you some quotes from the study.

Here's the application for the book of Esther...."When God's voice can't be heard, His hand can be seen. God is at work behind the scenes, protecting His people. He uses people to accomplish His plan, and His timing is always perfect."

"Spiritual tenacity means to work deliberately on the certainty that God is not going to be worsted. One of the greatest strains in life is the strain of waiting for God. Remain spiritually tenacious."
Oswald Chambers.

"At times, God seems to stand in the shadows. But given a chance, wouldn't we much rather experience Him standing in the light? We feel more confident when we can see Him clearly, assured that everything will work out for good. But if the book of Esther teaches us anything, it is that sometimes God works incognito- though just as mightily as ever - with His providence concealed. God's unseen hand at work is a Timeless Principle."

"But no matter how hard we look and listen, there are times in life when God remains hidden. Often we think it is failure on our part - that we must not have tried hard enough. But we have to understand that silence and mystery are part of the nature of God. And it is in those times that we must trust what we cannot see - His faithfulness - and hope for what we cannot feel - His mercy. Even in the darkness, we can rest in His love."

WOW! Even in this dark time, God is still faithful to reassure me with messages from His Word. What a great God we serve!

Here's an update on the Blood Drive for Connor and Cody N at our school. 300 people gave blood and 134 people signed up for the bone marrow registry. What a great event!!! Thanks for all the hard work that went into the blood drive!

Also, I wanted to thank all the participants for TeamConnor at TX Tough. We had three teams, one from the wives at Tait's office, who were Julie A, Scarlett L, Alix S, myself and my niece,
Lexie. Also, the PCA team had Debby P, Dylan P (8 year old classmate of Connor's), Missy S, and Denise T. Our Sunday School team had Blair and Kelli F, Chris and Shara L, Elizabeth C (8 yr old friend of Connor's), Derry and Julia A. One team placed 3rd place and the other 2 teams were in the top 10 or 15. Great job, guys! Thank you for all your love and support of Connor!

Joy Cruse

Purple Picture Post & Babies

So, who wore purple last week?

I had intentions of taking pictures of all of us that wore purple (i.e., Mom, B, me). Around 9pm that night when we were in our PJs, I realized we didn't. Sorry.

Here is a pic of my friend, M. She was in our wedding and is a Neurosurgery PA. She is one of the reasons I was able to get in with my neurosurgeon. She had been on rotation with him and kept telling him about my seizures. The rest is history! Anyway, her aunt lives out here and they had a baby shower for her. Her sweet little girl will be here in another couple of months. It was so fun to get to see her. She wore purple!!!



Sweet story about purple:

The night before, we were late getting back to the house when B realized that he didn't have anything purple in his closet. So, he ran into Steinmart to grab something. While he was in there, the lady asked him what he needed. He told her and he told her why...she immediately told him that she would be praying for me. Then, she went to the front of the store and told all of the ladies working that they were all going to wear purple the next day for M and for epilepsy!! B had me in tears as he told me. She was even helping some other people pick out purple clothes off the rack that they could wear.

Thank you all for wearing purple. Most importantly, thank you for praying!! We're at seven days with no seizures!!

Let's Fall to our Knees & Pray

Begin using this new website www.teamconnor.org to access both TeamConnor and Connor Cruse websites.

Thursday, April 2, 2009 12:53 AM CDT

WE received the scan results yesterday. Again, not what we wanted to hear. It is still growing. The drugs in this clinical trial are not working, so we will go to Plan B. Plan B is a combination of a chemotherapy drug called vp16, which he would take orally, and a targeted therapy drug called cetuximab, which would be an iv drip once a week. The cetuximab is supposed to target that epidermal growth factor receptor that his tumor expresses. PLEASE PRAY THAT THIS NEW PLAN WILL WORK. We are believing that God is just shutting one door and opening another. PLEASE PRAY FOR GUIDANCE; THAT THIS IS THE TREATMENT WE SHOULD GO TO NEXT.

Connor is feeling a little more tired these days, probably we are finally seeing the effects of the cancer. PRAY GOD WILL STRENGTHEN HIM FOR THIS BATTLE. I know that if the cancer will just start receding, his stamina will get much better.

WE covet your prayers. Thank you so much for storming heaven's gates for Connor. Please pray THAT TAIT AND I WILL BE STEADFAST AND IMMOVABLE, LIKE CHARLES SPURGEON MENTIONS IN THIS QUOTE.

"They stand in the midst of difficulties steadfast and immovable. Those that glorify God must be prepared to meet with many trials. No one can be illustrious before the Lord unless their conflicts are many. If yours is a much tried path then rejoice in it, because you will be better able to display the all-sufficient grace of God. As for His failing you, never dream of it - hate the thought. The God that has been sufficient until now should be trusted to the end."

Still believing,
Joy Cruse