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

Purple Day!

Tomorrow, Thursday, March 26th is Purple Day, Epilepsy Awareness Day! It was a day created by a young girl in Canada to create awareness for Epilepsy. So, wear Purple tomorrow and tell everyone why you are wearing it!!!

March 26th is also the day that B rushed me into the hospital because my seizures were so frequent. I had almost 20 in about a ten hour time frame. Early the next morning, I was diagnosed with Epilepsy. So, March 26th & 27th hold a "special" (if you can call it that) place in our hearts.

You can read more about it here:
Purple Day

So, tomorrow is basically the one year anniversary of starting to get answers, though we still don't have a cure! Wear purple tomorrow and shave your heads if you really want to have fun! Just kidding!

Thank you for all of your love and prayers!!!

Miracles-Part 2

This was the question I posed yesterday:

Just curious as to how each of you would define a miracle?

It can be one word.
It can be a paragraph.
It can be scripture.
It can be a story.

Whatever you want to share.
Start typing....
Don't be shy.

Of the 50+ people that have been to the blog, only one has responded. Then, I read a blog today with this post about Miracles!!!
It links to this post which also discusses Miracles.

What is a miracle to you?

Blessings!!

Throughout this crazy journey we've been on, we've been blessed by so many of you...

Since Tx won't let me drive, it's hard to run basic errands. I like a good bargain and so if I see that something is on sale at one store vs. another, it takes great effort to get to each store. Plus, I need to pick up prescriptions quite often. Other times you just want to get out of the house!!! B & Mom run me on their share of errands (i.e., doc appts). So, I hate to constantly ask them for all of the other little trips around town, too (though I know they would do it & they do do it with willing & loving hearts).

When I was first unable to drive, my next door neighbor took me to the grocery store every week. She also taught me about The Grocery Game which has saved us so much money since I've not been able to work for over a year and Ben's time at work was so limited last year sitting next to me in the hospital for so many months. If you decide to sign up for the grocery game, let me know so that I can give you my e-mail as a referral because I can get credit & free months!!!

Then, my next door neighbor started working and was unable to take me to the store anymore. Our next door neighbor from our previous house then offered. She is a physician and so I know it was such a sacrifice from her schedule, but she still worked to make it happen each week.

Then, a friend from church offered to take me each week. Her name is K. She is so patient with me and will go sit at the Starbuck's at the front of the store and just wait if I'm taking too long. There are times that I have a bunch of seizures and so the trip to the store takes a long time...she never hurries me. She has been such a precious blessing! She also gets as excited about coupons as I do...

I love our time together and our talks that we get to have in the car! However, I think her favorite time is when she gets to the house to pick me up and she cuddles with Hank!!!

Saying Hello to Hank

Looking at coupons & getting kisses from Hank!

Hank trying to cuddle with her!

Their official cuddle time!! Hank loves this!!
He actually starts to cry at the front door about
10 min. before she arrives each Mon. morning.

Thank you, K, for blessing me each week!

Thank you to everyone that has selflessly blessed us so much through this time!

Miracles

Just curious as to how each of you would define a miracle?

It can be one word.
It can be a paragraph.
It can be scripture.
It can be a story.
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Connor

Thursday, March 19, 2009 4:29 PM CDT Chemotherapy is completed. Scans/tests required by the clinical trial are done. 11 days at the hospital or clinic in Ft. Worth are behind us. Grandpa Burt's funeral was on Monday. It has been a wild ride over the last two weeks. Thanks so much for everyone's prayers. I know they sustained us during this time.

The chemotherapy was not too bad, considering some of his past treatments. His blood counts looked good today, which allows us to go to Grandma and Grandpa's for the weekend. Connor's appetite is coming back after the chemo. We are all faring well, considering. In the midst of this storm, I am trying to praise Him for all our blessings. I know that praising Him will bring my heart's focus on Him, instead of my troubles.

Counting my blessings, I realize that we have been so blessed to have so many pray for and support Connor. Our school (Prestonwood Christian Academy) had several special prayer times for Connor and our church (Prestonwood) had prayer time for him during Sunday School. It was so beautiful hearing all of those children pray for Connor. I know it had to be like a beautiful aroma to Him. So precious. Not only has our church, school and friends rallied around us, but so has Tait's company (Northwestern Mutual) . People from across the US have helped us so much over the past 4 years. Just recently, several people flew in to speak to people at Tait's office to re-energize them and lend their support during this tough time for our family. Thanks, Keith, Ira, Chris, John and Laura. Many of our friends have shared that they have passed along Connor's prayer requests and now even strangers are praying for us. We feel your prayers. Thanks for pounding on the doors of heaven for us!

Specific prayer requests:
1. Pray this chemo will work to kill the cancer cells. There is part of the tumor pushing out of Connor's abdomen. Please pray that this evidence shrinks to nothing. It would be evidence that God is answering our prayers.
2. Pray that Connor stays strong thru this new round of treatments
3. Pray for guidance. No charted path. God must make one for us.
4. Pray we bless others along the way.

"What If His People Prayed" by Casting Crowns (some of the lyrics)

What if the armies of the Lord
Picked up and dusted off their swords
Vowed to set the captives free
And not let Satan have one more

What if the church, for heaven's sake
Finally stepped up to the plate
Took a stand upon God's promise
And stormed hell's rusty gates

Chorus:
What if His people prayed
And all who bare His name
Would humbly seek His face
And Turn from their own way

From Connor's Daddy

Below is an update sent out by Connor's Dad last week. Also, Connor started his first round of chemo yesterday (Friday) to treat this new tumor they have found. Continue to pray fervently for him. Also, let me know if you want a Connor's Prayer Warrior bracelet like we wear to remind you to pray for him all the time!!!

I have not updated in some time and with Joy's wonderful writing ability, many times I'm even awestruck on how she expresses the current status of Connor and the fight that we're going through with his cancer. We have been fighting cancer with Connor almost 46 months, longer than WWII. And when I hear people ask where do you get the fight, where does the energy come from, how much longer, how does Connor have the stamina, we simply have one answer and that is our faith in God through this fiery journey that we've been on.

With visits to Dallas, Houston, Boston, New York and now Ft. Worth, with the primary tumor being Neuroblastoma and now a completely new tumor, we still rest in the Lord. At the end of the day we will fight until there is no more fight. The only way we are getting through dark nights, thoughts that we don't want in our brain, questions we don't want to have to answer, doctors we do not want to have to see is your prayers, your encouragement, and knowing that our Lord is giving us strength.

Early on in this fight I quoted Psalms 23 saying we are going through the valley of darkness, to our right is dark, to our left is dark. Our old life, our old "normal" is behind us and the new normal ahead of us is black. The only way we're getting through this is with your fingerprints all over us pushing us through this. Today as the father of an eight year old son with two dragons inside of him trying to devour him I say thank you. With 46 months of fighting this, hundreds of visits to the doctor, thousands of pills taken, gallons of chemo infused, and countless surgeries, Connor has never complained.

My question to you today is what do you have to complain about? I'm asking you to be grateful, to embrace life's challenges, to say a prayer for an eight year old boy who is fighting cancer, and also I say thank you for your incredible faithfulness in lifting up our family.

Connor

From Connor's Mommy:

Hawaii has been wonderful. It's been full of fun, laughter, rejuvination and re-focus. We are so grateful that Connor's time here was event-free, especially since the doctors recommended that we bring some pain medication. Thank God, we have not needed any. More proof of God's provision. PLEASE CONTINUE TO PRAY THAT GOD WOULD PROTECT CONNOR FROM SERIOUS HARM FROM THE CANCER. PRAY FOR CONNOR'S STRENGTH AND ENDURANCE AS HE WILL START HIS NEW BATTLE. PROTECT HIS BODY FROM THE CHEMO'S HARMFUL SIDE EFFECTS. PRAY CONNOR WILL RESPOND TO THIS NEW THERAPY. I hope God proves these nay-sayers wrong.

Thankfully, we should be starting Connor's treatment next week. We will meet with doctors in Ft. Worth Monday afternoon to sign consent forms and do any test we need to. On Tuesday, we will complete the tests and hopefully get started with the treatment. This first trial that he is doing is a combination of 2 chemotherapy drugs. We were looking at doing something that the doctors could just prescribe without being on a trial, but as the doctors pointed out, he can always do that. Trials, on the other hand, are not always open and available. So, we will continue on this trial until it ceases to work or it becomes too toxic for him. Then, we may have some new trials come available or a compassionate use drug may be ready at that time. AS YOU CAN SEE, WE STILL NEED MANY PRAYERS FOR DIRECTION. We are praying that God will put walls to the left and right and behind us so that the way before us is crystal clear. We want him to clear a path for us, as he has done over the past 4 years.

PLEASE PRAY FOR TAIT AND MYSELF AS WE GEAR UP FOR ANOTHER BATTLE. I do confess that Satan has been attacking us with fearful thoughts. He is trying to find our weakness. As we struggle against this battle in our mind, we continue to turn to God for strength and He has not let us down. As I continue to get weaker and weaker, I feel His presence growing stronger and stronger. Satan may feel like he is gaining ground with us, but he has not and will not win this war. Christ has already won! "In this world, you will have trouble, but, fear not, for I have overcome the world."

At this point, we are lying Connor at His feet. God is on His throne, He is in control (we are definitely not), and He will never leave our side.

I search for love, when the night came,
And it closed in, I was alone,
But you found me, where I was hiding,
And now I'll never ever be the same,
It was the sweetest voice,
That called my name saying

You're not alone, For I am here,
Let me wipe away your every fear,
My love I've never left your side,
I have seen you through the darkest night,
And I'm the one who's loved you all your life,
All of your life

You cry your self to sleep, cause the hurt is real,
And the pain cuts deep, all hope seems lost,
With heartache your closest friend,
And everyone else long gone,
You've had to face the music on your own,
But there is a sweeter song that calls you home saying

You're not alone, For I am here,
Let me wipe away your every tear,
My love I've never left your side,
I have seen you through the darkest night,
And I'm the one who's loved you all your life,
All your life

Faithful and true, Forever,
Oh my love will carry you

Still Believing,
Joy Cruse

March 4, 2009

Today is a very special day!

While at lunch with Mom, I received a message from my dear friend A's little girl. "A" sang in our wedding and has been such a precious friend through the years. She lives in Houston and each time I've been in the hospital, she has been there by my side. Each time with a picture colored for me from at least her oldest, A, and sometimes her other little girl, S. She is such a steadfast friend and woman after Christ. She is always there to offer prayer and encouragement. I hope to be like her as a Mom some day, too!

So, back to the message. I got a message from her little girl asking me to call her back that she had "really exciting news to tell me." She said that it was so exciting and kept going on and on about how exciting it was and that I needed to call her back. I convinced myself that either her Mom was pregnant again or they were somehow going to be moving to Dallas.

When she answered, she told me that this morning, she was laying in bed talking to her Mommy and decided this was the day that she was going to accept Jesus in her heart!! I can't see to keep typing because I am crying. That's what I was doing as she was telling me...I kept trying to tell her that they were happy tears. I have known this sweet little girl since the day she was born (I even got to talk to her in her Mommy's belly) and now she is a New creation in Christ (2 Corinthians 5:17).

They are having a little party tonight to celebrate that Jesus is now her Savior and she gets to spend eternity with Him! How cool!! We talked about the fact that today is March 4th, 2009, and it's a very special day and a day she'll never forget...I still remember sitting by the lake at Sky Ranch and asking Jesus into my heart. Of the many things I've forgotten, that is one memory I hold dear....

These are some pics over the years with Miss A.

This is us together a few years ago.

Me with her Mom, A (such a sweet friend).

Isn't she adorable?

This is one of the times I was in the hospital last year.
Also, in the pic, her sister (S), her Mom, her brother (J), my friend (Dr. S), and my Mom.

Hangin' in the hospital with Miss A!!
Another time they came to visit (her on the far left).
Her Dad was able to come for this visit, too!

I spent my 30th b-day with her.
Mom and I were in Houston for doc visits & so I got to spend the big day with them.
Didn't even get to spend the day with my hubby, but I was with Miss A!!

Our most recent visit to Houston after the surgery.

This sweet face now knows the joy of Jesus in her heart!!

If you don't know Him as your Savior, ask me or ask someone else how you can know Him!!! It is "really exciting news!!"

Pray for her sweet heart that she continues to grow in her relationship with Him!!

Magnolias

This is an e-mail I received and couldn't delete. Instead of forwarding it, I am posting it here. Consider how you might let it speak to you today.

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

I spent the week before my daughter's June wedding running last-minute trips to the caterer, florist, tuxedo shop, and the church about forty miles away.

As happy as I was that Patsy was marrying a good Christian young man, I felt laden with responsibilities as I watched my budget dwindle . . .So many details, so many bills, and so little time.

My son Jack was away at college, but he said he would be there to walk his younger sister down the aisle, taking the place of his dad who had died a few years before. He teased Patsy, saying he'd wanted to give her away since she was about three years old!

To save money, I gathered blossoms from several friends who had large magnolia trees. Their luscious, creamy-white blooms and slick green leaves would make beautiful arrangements against the rich dark wood inside the church.

After the rehearsal dinner the night before the wedding, we banked the podium area and choir loft with magnolias. As we left just before midnight, I felt tired but satisfied this would be the best wedding any bride had ever had! The music, the ceremony, the reception - and especially the flowers - would be remembered for years.

The big day arrived - the busiest day of my life - and while her bridesmaids helped Patsy to dress, her fiancé Tim walked with me to the sanctuary to do a final check. When we opened the door and felt a rush of hot air, I almost fainted; and then I saw them - all the beautiful white flowers were black. Funeral black. An electrical storm during the night had knocked out the air conditioning system, and on that hot summer day, the flowers had wilted and died.

I panicked, knowing I didn't have time to drive back to our hometown, gather more flowers, and return in time for the wedding.

Tim turned to me. "Edna, can you get more flowers? I'll throw away these dead ones and put fresh flowers in these arrangements."

I mumbled, "Sure," as he be-bopped down the hall to put on his cuff links.

Alone in the large sanctuary, I looked up at the dark wooden beams in the arched ceiling.

"Lord," I prayed, "please help me. I don't know anyone in this town. Help me find someone willing to give me flowers - in a hurry!"

I scurried out praying for four things: the blessing of white magnolias, courage to find them in an unfamiliar yard, safety from any dog that may bite my leg, and a nice person who would not get out a shotgun when I asked to cut his tree to shreds.

As I left the church, I saw magnolia trees in the distance. I approached a house...No dog in sight. I knocked on the door and an older man answered. So far so good..... No shotgun.

When I stated my plea the man beamed, "I'd be happy to!"

He climbed a stepladder and cut large boughs and handed them down to me. Minutes later, as I lifted the last armload into my car trunk, I said, "Sir, you've made the mother of a bride happy today."

"No, Ma'am," he said. "You

don't understand what's happening here."

"What?" I asked.

"You see, my wife of sixty-seven years died on Monday, on Tuesday I received friends at the funeral home, and on Wednesday . . .. He paused. I saw tears welling up in his eyes. "On Wednesday I buried her."

He! looked away. "On Thursday most of my out-of-town relatives went back home, and on Friday - yesterday - my children left."

"This morning, he continued, I was sitting in my den crying out loud.. I miss her so much. For the last sixteen years, as her health got worse, she needed me. But now nobody needs me. This morning I cried, Who needs an eighty-six-year-old wore-out man? Nobody! I began to cry louder. Nobody needs me!"

"About that time, you knocked, and said, 'Sir, I need you'."

I stood with my mouth open.

He asked, "Are you an angel? The way the light shone around your head into my dark living room..."

I assured him I was no angel. He smiled. "Do you know what I was thinking when I handed you those magnolias?"

"No. I decided I'm needed. My flowers are needed. Why, I might have a flower ministry! I could give them to everyone! Some caskets at the funeral home have no flowers. People need flowers at times like that and I have lots of them. They're all over the backyard! I can give them to hospitals, churches - all sorts of places. You know what I'm going to do? I'm going to serve the Lord until the day He calls me home!"

I drove back to the church, filled with wonder. On Patsy's wedding day, if anyone had asked me to encourage someone who was hurting, I would have said, "Forget it!" It's my only daughter's wedding, for goodness' sake! There is no way I can minister to anyone today. But God found a way. Through dead flowers.

"Life is not the way

it's supposed to be.

It's the way it is.

The way you cope with it

is what makes the difference."

If you have missed knowing me,

you have missed nothing.

If you have missed some of my emails,

you may have missed a laugh.

But, if you have missed knowing my LORD

and SAVIOR, JESUS CHRIST,

you have missed everything in the world.

May God's Blessings

be upon You.

THIS IS SO TRUE,

BEING NEEDED

IS SO UPLIFTING

TO EACH OF US..

This story is too beautiful not to send...

Nana & Pics

Thank you, faithful prayer warriors! We found out this afternoon that Nana did well in her surgery. She had to have three stents placed in one of her carotid arteries (we're not sure which one). She is recovering in the hospital tonight and should go home tomorrow.

Also, do you think the pics are awful? Do you like them? Is there a favorite? A least favorite? Tell me...help me...I can't make up my mind and you haven't commented yet. Let me know what you think.

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